Joshua Parker's Journal



Joshua Parker'sJournalSep 8, 2013 3:52 PMI need to clarify a few things from my last entry.1. Joshua is NOT off all medications. As of right now, he is still getting 4 times the average adult dose of methadone every day, plus gabapentin (pain med) and 4 other non-pain medications. He will go home on gabapentin & the other 4 meds for sure. He might also need some methadone if he can't be successfully weaned completely off of it. We also anticipate adding at least one behavior medication before he is discharged. So no, he is not off all meds. He IS off all IV pain medications. 2. He is not "getting better". Everything he was doing before he came to the hospital, he is still doing. He sleeps 13-14 hours before typically being woken before he's ready to be up. He walks around a little bit. He plays on his iPad. He watches movies/tv. If we were at home, he'd also be playing on the computer, but there's no option for that here. He eats & drinks small amounts because it causes belly pain. His voice is still hoarse. He is not doing anything significant now that he couldn't do before we began weaning him off of narcotics. If I see him regaining skills that he's lost over the past 1.5 years, THEN I will report that he's showing improvement or "getting better". Until that happens, however, I'm not saying that because the fact is, he isn't getting better. He's at a plateau right now, which is a place he's been at many times before in his life. Time will tell if he's going to inch upward or slide downhill some more and enough hasn't passed to make a judgment call either way.3. His behavior is VERY different than the Joshua of old. The behavior is similar to what we were seeing at home for 3 weeks BEFORE we came up here and BEFORE we began weaning him from IV medications. This behavior is most likely the result of being on high-dose opiates for so long. It is most likely permanent. It is not going away despite the fact that Joshua is on so much less opiate medication now. It is not withdrawals (it was present before we removed any medication AND it isn't getting worse or better regardless of what we do with his meds). It is not the opiate medication, itself, causing the behavior (if that were the case, being off the meds would have eliminated the behavior).Yesterday, the nurses brought in arm restraints to put on Joshua if he continues trying to hurt me or others. I have scratches on my neck and chest, bruises on my legs from being kicked and I listen to screaming, raging &/or verbal insults hurled at anyone in his proximity for hours each day. The nurses we had yesterday & today KNOW Joshua from all of his previous hospitalizations (they're 2 of our favorites, but Joshua doesn't even remember them) and they are shocked and sad at what has happened to him. One said that when Joshua is raging, he's like an adult who has drank a fifth of tequila and is completely out of control... that he's not "there" when he's having a fit and he is completely unreachable. I agree with her assessment. They are documenting things in detail and will specifically tell the psychiatrist that redirection, distraction & collaborative problem solving do NOT work with this little boy and that he is unable to reason or be reasoned with. I am thankful that someone who KNOWS Joshua sees what I am seeing and is "going to bat" for him/me. I hope it will make a difference with the psych. We have videotaped a couple fits that have taken place with nurses in the room to show the psychiatrist, so that he can watch what we are talking about. Even when Joshua is seemingly calm, it is ONLY because everything in his environment is EXACTLY the way he wants it to be. He doesn't want anyone to talk. He wants to control what is on the television. He controls every miniscule detail that he can and as long as everything goes his way, he's calm. The moment things aren't the way he wants/needs them to be, he starts getting riled up and, depending on what is happening or if anyone is making demands of him (such as needing to do a blood pressure check), he will escalate very quickly to a full-fledged meltdown. Again, I want to reiterate that this is NOT merely "bratty 7 year old" behavior and it isn't "Oh, he's tired of being in the hospital," behavior. He is out-of-control and violent. He tries to hurt others and laughs when he succeeds. This is NOT Joshua's personality. It is a very drastic change from the personality he's had his entire life and it's a recent change that had nothing to do with our weaning him from narcotics. And I don't want to offend anyone, but please don't offer me behavioral advice right now. If I later decide I'm open to hearing suggestions from people who aren't seeing Joshua firsthand, I will ask for help. Right now, however, I am simply trying to clarify things so that people will understand that things are NOT all rosy and wonderful now just because we are weaning Joshua off narcotics.Because Joshua's behavior is so ugly, my children at home are NOT eager to see their brother right now. They miss JOSHUA and this little boy they are seeing on Skype and/or listening to as he demands & yells in the background while I'm trying to talk to them on the phone is NOT the brother they miss. Seroquel was the behavior medication that we began using soon after Joshua first began displaying these horrible behaviors so the kids at home did not have to endure his verbal abuse & violence. Now that he's not on any behavior meds, Adam, Faith & I are the ones seeing the full spectrum of how bad this behavior is (along with the nurses). I am praying that the doctors will help us get Joshua under control before they discharge him. I don't want my children at home to be hurt by their brother, either physically or emotionally, and while redirection and distraction work for "minor" things, Joshua is rarely thwarted as he perseverates on something and that means an escalation of behavior when he can't have things the way he wants. The nurses have said that Joshua's behavior is typical of brain injured children. I am waiting to see if a doctor agrees with that assessment and, like I said, I am praying for help with problem-solving this situation.4. Joshua does still have headaches. His pain is not all gone. At this time, I'd characterize his pain as similar to spring, 2011 ~ he has positional headaches, meaning that after he has been upright for awhile, his head hurts and we have to get him to lay down. If, after 30 minutes or so, his head pain is not significantly diminished, we give him ibuprofen. That is working right now and that is great and I am happy that he is comfortable for all but short periods of time throughout the day, but it doesn't mean he's pain-free because he's not. It also doesn't mean he won't experience a progression of pain once again and eventually need more medication again at some point. We don't know if that will happen, but it could.It is great that Joshua will go home without narcotic pain meds, but managing his pain is only one piece of the puzzle and right now, the behavior component is much more significant and concerning. If we can get that hammered out and a workable solution in place, I will feel a lot more hopeful about the future.Sep 6, 2013 10:53 PMThis hospitalization has been challenging in many ways. I have not intended to write in a way that leaves people wondering what is going on, but if you think you're confused by all of the changes going on as you read this journal entry, please try to put yourself in my shoes and imagine how it feels to be getting hit with constantly-changing thoughts and ideas and theories from multiple doctors,each who has varying knowledge of your child, and then maybe my reluctance to write in detail here will be more understandable. As every parent with a child who has a chronic condition learns, there are always people reading whatever is written with an eye for anything they can interpret as a discrepancy and with a heart that is judgmental & accusing. I try to write carefully and to do my best to be clear so as to avoid as many negative responses as possible. I aim to be honest & transparent so that no one can accuse me of falsehood or manipulation. Most people who read what I write recognize that. I realize there will always be those who don't, however, and that is why I have not wanted to write detailed updates about each step we have taken during the past week that Joshua has been hospitalized. Information that I am given has changed from one doctor to the next. Plans have changed... procedures scheduled & then canceled at the last minute. I didn't want this site to be full of "We're doing this... oh wait, no we're not," and "Dr. X said this is happening... oh wait, Dr. Y contradicts Dr. X and now the prevailing thought is this." It's confusing to me and I am the parent sitting at my child's bedside hearing every word that is spoken by these doctors. Trying to relay that information and then correct it each time someone changed their mind over the past week was too daunting and exhausting for me to do. That is why I've not given full disclosure. I had a comment in the guestbook yesterday that made me realize others who are reading here are having trouble understanding what is going on (I emailed that commenter to answer all of her questions and deleted her comment so no one would think I was ignoring her &/or wonder why I wasn't answering the questions), so I will attempt to explain everything with the caveat that this is what the theory/thought/plans are as of *right now* and they may change in the days to come.When we came to Portland 8 days ago, the doctors thought Joshua was close to death and needed to have his narcotics rotated to enable them to give smaller doses so that as he required more to be kept as comfortable as possible, they would have the ability to give more without causing adverse effects. This is a common practice. Long-term use of narcotics creates tolerance and a person needs more & more of the medication to get the same effect. When they are on too much narcotics for too long, they can develop a condition called neurotoxicity. Neurotoxicity is defined in Wikipedia this way: "Neurotoxicity occurs when the exposure to natural or artificial toxic substances, which are called neurotoxins, alters the normal activity of the nervous system in such away as to cause damage to nervous tissue. This can eventually disrupt or even kill neurons, key cells that transmit and process signals in the brain and other parts of the nervous system. Neurotoxicity can result from exposure to substances used in chemotherapy, radiation treatment, and drug therapies (among other causes). Symptoms may appear immediately after exposure or be delayed.They may include limb weakness or numbness, loss of memory, vision, and/or intellect, uncontrollable obsessive and/or compulsive behaviors, delusions, headache, cognitive and behavioral problems and sexual dysfunction.”When we arrived in Portland, Joshua was experiencing weakness in his legs, loss of memory & intellect (not complete, of course, but noticeable), uncontrollable obsessive behavior, headache, cognitive problems and behavioral problems. At first, the doctors believed the weakness in his legs was attributable to spina bifida and the other symptoms were clinical signs of condition progression. There was also concern that Joshua could be manifesting signs of neurotoxicity caused by either the fentanyl or methadone he was on. At the time of his admittance, Joshua was receiving 450mcg per hour of fentanyl and his bolus doses that he could get as often as every 10 minutes for pain were 350mcg each. As a comparison, the average dose given to a child would be 1-2mcg per hour. His daily methadone doses were 90mg, 90mg & 95mg compared to the average adult dose of 10mg. Simply put, Joshua’s doses were astronomical. The plan was to stop fentanyl & begin ketamine to reset his pain receptors and dilaudid at roughly half the amount of fentanyl he was getting and establish a new baseline at a lower level for where Joshua needs to be regarding medication.The switchover went without complication. The PICU doctors and Dr. G had fully anticipated problems, but not one of those concerns occurred. Equally amazing was the fact that Joshua did not need extra medication despite the dilaudid dose being so much less than what he’d been getting (Dr. G had thought he would). Because of that, the PICU team wanted to continue weaning Joshua down to the lowest dose that would still give him adequate pain coverage. It made sense. If we got him down to a level of 1, he’d have more time to advance in dosage (as he grew more tolerant of the dilaudid) before he got back to a 10 and would need to get his pain receptors reset again. So with everyone in agreement, a plan was laid out to see “how low can we go” and still keep Joshua comfortable.Amazingly, Joshua was weaned off ketamine without any problem. Then he came off dilaudid (yesterday was the day it was completely turned off). So far, he’s had just 2 headaches and only 1 required some ibuprofen to be managed adequately. Today began the wean off methadone. Well, to be technical about it, while Joshua was in PICU, they lowered his daily doses from 90/90/95mg to 60/60/75mg and yesterday he went to 60mg for each dose, but the official attempt to get him completely off this medication began today. Tomorrow, he’ll go to 45mg for each dose and the plan is to lower it by another 15mg per dose every 48 hours, so if everything goes perfectly, Joshua will be off methadone on September 15th. Dr. G doesn’t know if he’ll make it all the way off, but again, the plan is to get him to the lowest dose possible, so we’ll continue going down unless Joshua starts having increased pain that isn’t easily managed with over-the-counter meds. If he is successfully weaned off methadone, they’ll take him off lorazepam and then the only pain medication he would be on is gabapentin. Everyone is stunned, amazed & incredulous that Joshua is coming off the amount of opiates he’s been on without problem. Dr. G never dreamed this could happen. Her nurse told me yesterday that anything I write on CaringBridge needed to be begin with the word “miracle”. Truly, no one knows why Joshua suddenly needs so much less pain medication now than before. I have been told repeatedly that it defies explanation, though one PICU doctor suggested that Joshua may not have needed the amount of medication he was getting in the first place. She suggested that he was in a negative feedback loop and that is what made everyone think his pain was increasing when, in actuality, it may not have been, and the end result would be neurotoxicity and the discovery that he can be kept pain-free at much lower doses of medication. A negative feedback loop would be where Joshua said his head hurt and received medication and the medication caused him to have a worse headache, which would then have triggered us to give him more medication, which would make the headache worse, ad nauseum. I'm not sure if I agree completely with that PICU doctor's theory only because for a very long time, Joshua's headaches were eliminated by medication, not made worse, but at this point, I'm confused enough to just toss up my hands and say, "Okay. Whatever the reason, he's not needing as much pain medication and we all agree that's a good thing. Let's move on."It is fantastic that Joshua is off IV pain meds and his oral pain meds are being reduced, but as is so common in life, something good often has a less-happy flip side. For Joshua, the flip side is the lingering effects of neurotoxicity. Being on the amount of opiates (narcotics) that he has for as long as he has appears to have caused some damage. As he is coming off the medications, we are not seeing improvement in his behavior or cognition or obsessive/perseverating thoughts. We *are* seeing all of those plus lapses in memory, rages, opposition, intense tantrums over incredibly minor things, lack of reasoning, and other things that now have doctors (including the psychiatrist) leaning toward a diagnosis of autism for Joshua.How can a 7.5 year old develop autism or autistic-like symptoms? Well, when you come from a family that has a genetic predisposition to autism (4 of my bio kids are on the spectrum), there is an increased sensitivity to neurotoxins. Opiates are a neurotoxin, so I am guessing it stands to reason that Joshua would be more likely to have autism “triggered” by long-term narcotic use than the average child. While he has not been given an official diagnosis, what I keep getting told is the doctors’ theory that the narcotics were “masking” Joshua’s autistic symptoms/behaviors and as they have reduced the amount of opiates in his system, his “true personality” is emerging and with it, the behaviors/symptoms we are witnessing. I don’t see that as a plausible theory since Joshua’s personality up until about 5 weeks ago was NOTHING like what it is now. I’m more inclined to think the reality is that Joshua was being overmedicated and that caused brain cell death (neurotoxicity) and that damage leaves us with a child who behaves in similar ways to an autistic child. Do I think “autism” is the correct diagnosis for Joshua? At this point, I’m not sure. I can see how many of his behaviors and mannerisms could be attributed to autism, but there are other things that don’t fit and are actually more like what I’ve read a child with brain damage might exhibit. I think that the MRI that was scheduled & then canceled at the last minute could have been extremely helpful by showing whether Joshua has brain damage. It also could have shown us whether he’s got better cerebrospinal fluid flow around his cerebellum as a result of his getting bigger in size & getting more space inside his head, which could be an explanation for how it is he’s still alive and why he isn’t experiencing the same level of pain that he was 1.5 years ago when he had his last surgeries. It is unfortunate that it was deemed not worth the risk of sedating Joshua to do the MRI because I believe that one test could have given us many answers and stopped a lot of the speculating; however,since the scan wasn’t done, speculation is all the doctors & I have.So, that leads to the next question: what are they speculating? Aside from the possibility of an autism diagnosis, the doctors are greatly encouraged by how well Joshua has tolerated the weaning of his pain medications. They are hoping that the fact that he doesn’t need so much medication also means his risk of dying any time soon is greatly reduced. No one knows that for sure, but that is the hypothesis that they are going off of now. That is the paradigm shift I spoke of in an earlier journal entry. The doctors are now thinking that because Joshua isn’t needing so much pain medication, maybe the pressure against his brain stem has lessened and as a result, the threat of him dying soon is gone. Yes, they say, he still has his underlying “life limiting” condition and yes, they say, they don’t know with any certainty when he will die, BUT since he has been able to come off IV meds & is being weaned off of methadone, maybe that indicates that he’s got more space now inside his head due to getting older & bigger and maybe that means he will be here for many months, or even years, to come. Everyone is VERY excited about this development and wants me to be just as excited. While I am happy about how well Joshua is coming off the opiates, I think very few people up here understand why I have some reservations & that actually surprises me.Yes, I AM very happy that Joshua has come off all IV medications and is getting lower doses of methadone with the hope to get him off that medication entirely. That is fantastic and exciting and all the other happy superlatives you can think of. Sincerely. I am genuinely happy with this development. But I am looking at (and listening to) the fallout that almost 2 years of high dose narcotics have wreaked on my little boy, who now has some significant behavioral & developmental issues. I am trying to wrap my mind around the realization that the doctors & I could have inadvertently caused harm to Joshua by treating him in a way that everyone believed was medically appropriate but in actuality might not have been. I am thinking about how my family and I will follow the doctors’ advice to “live as though Joshua will be here for years to come while knowing he could die at any time,” and what that will look like. I am remembering all of the things I’ve been told regarding Joshua’s prognosis and life expectancy and realizing that every prediction has been wrong, which leads me to wonder how I am supposed to have any measure of confidence in what is being said now. It’s not like any tests have been performed that enable the doctors to make their assertions with any degree of accuracy (to be fair, I don’t know if any such tests exist). And honestly, I think any medical professional up here should be able to understand that when I drove up here with Joshua 8 days ago, it was with the belief that he was very close to dying (since that’s what J’s doctor had told me), so telling me that he has been in a negative feedback loop and thus gotten overmedicated and what that means is that A) he doesn’t need as much medication and he isn’t in any danger of dying any time soon is going to be met with some skepticism. I don’t doubt he needs a lot less medication. I’m seeing that. I know it’s true. But I don't understand how not needing as much pain medication equates with a longer life expectancy (especially if it's true that he never actually needed as much medication as he was getting). I have asked specifically if he still has a chromosome abnormality and if Dr. W still thinks his brain stem is dysfunctional. The answer to both of those questions was an unequivocal yes. Dr. W, Joshua’s neurosurgeon, said she stands by her original opinion from November, 2011 and July, 2012, which is that Joshua has a problem with his brain stem and it would be too risky for her to try anything surgically (and her opinion is based on having SEEN Joshua’s brain stem multiple times over multiple years, so she watched the progression of its changes). So, knowing that, and knowing that the geneticist told me back on March 25, 2011 that the chromosome abnormality is a cracked foundation and that Joshua’s “house” (body) will eventually fail because of that cracked foundation, I am having difficulty blindly trusting the opinions of doctors whose specialties are not neurosurgery or genetics, especially when they've been wrong before. I think everyone wants to believe that since Joshua doesn’t need nearly the amount of pain medication that he’s been on, it HAS to indicate that things in his head aren’t as bad as they used to be. That maybe because he’s bigger and older, it could mean fluid is flowing better now and it could mean that his life won’t be cut short for years to come. I like that theory. I do! I have never been in any rush to lose my little boy, so I will be happy to have him here with us for as long as possible. However, in the absence of any proof that the fluid flow is better, I do wonder if the theory being embraced by everyone is just as wrong as every other prediction & theory put forth in the past. Ultimately, I don’t think it matters much simply because I truly believe that everyone involved in Joshua’s care (myself included) has always done their best to make good, appropriate medical decisions for him. I do not believe anyone ever did anything to intentionally harm my child (and I know I never did!). So at the end of the day, whatever damage was done to Joshua’s brain by the long-term use of high-dose opiates is no one’s fault and his life on Earth will go on for however long God has ordained for him to live. My family & I will love him & care for him & enjoy him for all the days of his life and we will endeavor to follow the doctors’ advice to live as though Joshua will be here for a long time and not focus on the second half of that sentence (the “even though we know he could die at any time” part). I won't pretend that it is easy to see the behavioral changes in Joshua or that it doesn't hurt to listen to his verbal assaults & screaming rages every day, but I have experience parenting kids with autism spectrum disorders, so I am going to draw on that knowledge base to work with Joshua and help him move forward developmentally. I'll get him re-started in speech, occupational and physical therapy, as well, and since he needs a bigger wheelchair, I will see about getting him a new manual chair that he can push himself in rather than the tilt-in-space chair he's been using. I'll buy a kindergarten curriculum and start working on re-teaching Joshua the basics that he previously knew but has lost over the past year. We'll get back to the business of living... just as soon as we get out of the hospital. I know this is a lot of information and I am assuming there will be some questions because I know how hard it has been for me to absorb all of the changes that have happened and I’m hearing everything firsthand. I will answer respectfully-asked questions, but please know that any rude or mean-spirited comments will be deleted before I see them because I have specifically asked my friends who moderate this site for me to keep an eye on the guestbook. Also, for anyone who may wonder what will happen to the money that was raised by “the other Kate” to be used for Charley to be able to take some time off work after Joshua dies, I want to make it clear that the money will be used exactly as it was intended. Until Joshua dies, it will stay in the account and it won’t be touched. I greatly appreciate those who donated to that fundraiser and do not want anyone to be concerned that their donation will be misappropriated because that is not going to happen. As always, thank you to everyone for your support and prayers and kind thoughts and encouraging words. This road has been very rough, especially as of late, and it helps to know so many care about the challenges that Joshua & the rest of my family faceSeptember 5, 2013The MRI and botox injections were canceled. The doctor in charge today said there was no reason to risk sedating Joshua for a scan that wasn't going to show us anything we could do anything with (ie: it was just to satisfy the PICU doc's curiosity because Dr. W has made it clear while we've been here that she's not doing anything surgically for Joshua again) and the pain management doctor said the botox probably offered limited benefit for Joshua, so we didn't need to do it if he wasn't going to already be sedated for the MRI. My reaction to the doctor & nurse case manager who came to tell me this information was, "Great! Can he eat & drink now, then?" And I handed Joshua a cup of water and a cookie when the doctor said he could have them. I was fine with not doing the procedures since it wasn't me who had requested them and I had, in fact, asked if it was safe to sedate Joshua for an MRI when the idea had initially been brought up.?He is still having some intense bouts of out-of-control behavior and we have videotaped a couple of episodes to show to the psychiatrist if/when he comes around again. I've been told he is supposed to be coming in to determine what techniques and/or medication would help manage this new challenge we have with Joshua, but with the exception of the initial 10 minute visit a few days ago, we haven't seen anyone from that department.It is nice being out of PICU. The room is a bit bigger and there is a shower in the bathroom. It's the little things that go a long way in the hospital!?Joshua was able to go to the play room today for awhile and he really enjoyed being in there. We sat on the floor and played "war" with various cars, trucks & random toys that we used as barricades. It was a fun way to pass some time.Sep 3, 2013 11:52 PMToday has been a long day with a lot of meetings and more changes. I'm not yet ready to talk about everything that is happening because just when I think I have an understanding of what I'm being told, the information changes and I'm left trying to wrap my mind around a new paradigm shift. What I can share is that I was told Joshua will be here for at least a couple more weeks as the team determines how much they can wean Joshua off the medications he's been on. They wonder if the meds have contributed to some of his pain & behavior changes he's been experiencing as of late. Joshua has been moved out of PICU & will have an MRI of his brain & full spine followed by botox injections in his head/neck tomorrow beginning at 1pm. Please pray for those procedures to go well. Also, please pray for clarity and wisdom for Joshua's medical team & for God's provision since my being gone from home for a month was not in our budget. Pray that we'll somehow be able to get home sooner than the team is anticipating so that we are with our family in time for Adam, David & Sarah's birthdays on the 15th of this month.Sep 2, 2013 10:10 PMThe psychiatrist has come & gone. I am so glad Adam & Faith were up here when he showed up because after he left, I turned to them and asked, "What was THAT?" Seriously, the biggest waste of 10 minutes of my life. He came in, wrote some stuff on the dry erase board about the different parts of the brain that psychiatry deals with, tried to talk to Joshua as though he was a typical 7 year old (and got ignored for his efforts), wanted to know if Joshua would draw something for him (Joshua can't draw anymore) or color for him (he can't color, either). Asked me what gross motor skills Joshua has lost and I rattled off a list. Told me about a website that has training ideas for managing children with challenging behaviors () and said that he'd make some recommendations for Seroquel that any doctor reading Joshua's chart could follow. Um... I thought the whole purpose of the guy coming here was to brainstorm OTHER medications aside from Seroquel? Seriously, he walked out and I was like, "WTH?!?" I told the nurse that I wanted to see the chart note after the psychiatrist writes it to see what the doctor's impression was of the brief visit because honestly, I can't imagine what he got out of it.The pain management specialist came by, as well. Long discussion ending with the plan to keep Joshua on ketamine & dilaudid & seroquel & gabapentin for now, plus he wants to do botox injections in a bunch of nerves all over Joshua's head & neck (40 injections ~ don't worry; Joshua will be sedated for the procedure) to give him some extra pain relief (temporarily). He said he's happy to manage Joshua's pain from a distance and will give recommendations to Dr. S for however long he is needed. That was definitely the highlight of the day and I am genuinely thankful for Dr. R stepping into Dr. G's shoes. It makes me wonder if maybe we will be able to avoid dealing with hospice once we're back home. That would be ideal ~ to be able to continue with our home health & home infusion nurses and not have to deal with changing over to the organization that has been so flaky with us.Today's PICU doctor wants to do a brain MRI to see what everything looks like inside Joshua's head now, so he'll have that soon. The pain management doc is hoping it'll be tomorrow or Wednesday so that he can synchronize his schedule to come to the hospital & do the nerve injections at the same time Joshua is sedated for the MRI. I have requested that we also do a full spine MRI so that we can see what his back looks like now, as well. The PICU doctor agreed that was a reasonable request, but never did say for sure whether she would order it. I know the question of "Why do all of this?" is probably in some people's minds. I don't actually know the answer to that, but I can speculate that, based on what I'm being told, the doctors want a whole new baseline for Joshua since he didn't die when they thought he was going to, so now they're all perplexed and I guess they think that if they get fresh data to start over with, they'll somehow be able to come up with answers. Those of us who have been walking this road with Joshua for so long know that isn't going to happen, but it seems every time new doctors join the party, they want to think they can figure him out and give us a solid prediction for what is going to happen & when. I figure that as long as it isn't going to harm Joshua and we're already up here, sure, they can go ahead and bring in all of their specialists and do all of their tests and get their new baselines. I'm happy to have the information, myself, since it gives me perspective on how things are progressing. But you know, it's not like Charley & I would believe any doctor even if they DID think they had come up with a solid prognosis. I mean, they've told us several times that he doesn't have long to live. We came up here a week ago believing ~ because of what they told us ~ that we would probably not come home with Joshua alive. So, really, how would we believe a prognosis/prediction now? Charley and I already decided we'll smile and nod and say, "Oh, okay," knowing in our hearts that only God knows the day & hour and obviously, for some reason, He does NOT want the doctors having a clue. And they really don't. Seriously. We've got them saying that it could be days, weeks or months. Sound familiar? It's a guessing game for them and I'm refusing to get embroiled in it. Whatever is going to happen is going to happen when it's going to happen. The ONLY thing that EVERYONE up here agrees on is that Joshua will die from everything that is wrong with him and he will have chronic pain until that happens. Charley & I are pretty much like, "Uh... yeah... we already KNEW that." I believe the flurry of new activity is simply because there are new doctors involved and they are trying to make sure everything has been tried (we already know it has ~ we did that almost 2 years ago) and that all of the data on Joshua is up-to-date.In other news, the EKG done yesterday showed that instead of the seroquel & methadone elongating Joshua's QT interval like those medications are expected to do (which was where the risk would have been for him having a fatal cardiac arrhythmia ~ that complication we were told there was a 'significant likelihood' of occurring), Joshua's QT interval is shorter than before he was ever started on any meds. I asked Dr. G how that happened and she shook her head and told Adam, Faith & me (paraphrasing here), "I don't know. I am done trying to guess what Joshua is going to do or why he's doing it. I can't predict anything with him. Every time I think I know something, he proves to me that I don't know half of what I think I do. At this point, all I can say for sure is that I know my name." So... one more example of Joshua's body doing the exact opposite of what the average person does in a given situation. Dr. G said she really shouldn't be shocked anymore because Joshua doing the unexpected is the one thing we can count on.Sep 1, 2013 9:11 PMAfter having a couple people at the hospital give me the impression yesterday morning that they believed Joshua's behavior was caused by poor parenting, I was done. D.O.N.E. Ready to scream at the next medical person who looked my way. I did not stay for rounds with the doctors yesterday. I left & took an extended shower, fuming & venting to God about what was going on and pouring out to Him all of my frustration & anger about this entire situation. I told God that I know I'm supposed to be thrilled to have more time with Joshua, but right now, I am ANGRY because days with Joshua are AWFUL. Why would any parent want more days with their child behaving like a little monster? Joshua has been kicking, hitting, screaming, pinching, spitting, & hurling insults. He strongly resists any procedure ~ even something as simple as a blood pressure or temperature being taken under his arm ~ so what should take 2 minutes takes 45 to get accomplished. Giving meds involves wrestling him and almost pinning him down so the nurse can access his g-tube while he screams. No one has been helping me with Joshua; nah, they're content to stay out of the room unless absolutely necessary and let me deal with him on my own (or with Adam & Faith's help if they're at the hospital). Then, to top it off, a couple hospital guys tell me how I've created this brat child by giving him what he wants, totally disregarding the fact that saying "yes" to a child's POLITE requests (which is how Joshua used to ask for things) is not anything like catering to a brat's demands (which we don't do)! Oh yeah, I told God, this is just fan-damn-tastic! What I really want is weeks or months of this! NOT!!! I was not feeling thankful for more time with Joshua yesterday. Nope. I was furious and hurt and so tremendously frustrated. I had brought a child to Portland whose pain & behavior were well-controlled and now I was sitting in a room with the most out-of-control monster child I've ever seen & no one seemed to be interested in helping me with the problem THEY had created when they switched all of his medications! The thought of having to take this child home and expose my other children to their brother acting so horrible left me feeling hopeless & crying. After the anger & tears had mixed with the water from the shower & gone down the drain, I was left with the realization that it did not matter what the medical professionals said because I know Joshua better than they ever will & their opinion of the situation doesn't change the reality I am living one iota. I know the truth. I know what kind of little boy he is and I know that my family doing what we can to make him happy has nothing to do with the brain deterioration causing personality changes. Doctors wouldn't look at a patient with Alzheimer's and blame the caregiver for the patient's rude outbursts or horrible behavior... this is a similar situation, albeit with a 7 year old versus a 77 year old. With that thought in mind, I went back to Joshua's room to face the war that would rage the remainder of the day with my child lashing out & hating the world & everyone in it. Fortunately, right about the time I feel I have nothing left in me to fight with is when God shows up.Our night nurse & the PICU intensivist on duty were angels in disguise. The doctor came in, sat down & asked me how things were going. Then, most importantly, she LISTENED and asked questions to gain a better understanding of what was happening with Joshua. She assured me that she was hearing my concerns and said she would make sure Dr. L (head of PICU) got fully informed in the morning that I wanted a plan to get Joshua's behavioral issues back under control. Then she told me that children who have behavioral problems caused by bad parenting develop those problems over time, not have the behavioral problem appear suddenly. So that was very reassuring for me to hear.The night nurse was amazing. Simply outstanding. Right away, she recognized Joshua's distress for what it was rather than jump to the "bratty 7 year old" conclusion. She observed his behavior for a couple of hours and when he escalated, she got him a dose of Seroquel (first nurse here to do that) and encouraged me to give him some extra dilaudid. It took 5 doses of pain meds plus the seroquel to get Joshua calm. Soon thereafter, he hugged me and said he wanted to go to sleep. After the day we'd had, I was relieved to kiss him (without getting smacked) and watch him drift off peacefully. Once he was asleep, Juli (the nurse) came in and we began talking. She was adamant that Joshua does NOT need to be suffering like this and that medicating him is entirely appropriate. I asked her what she had been through to give her that perspective because she had understanding in a way no one else I've encountered up here (this time) has. She quietly told me she had watched her mother die over the course of 7 years from a very rare form of cancer. Because of that understanding, she is now a strong advocate for appropriate pain management for her patients, especially those who are going to die from their conditions. Like the PICU doctor, Juli promised me she was going to fight for Joshua to get what he needs. I was so relieved that I hugged her as I thanked her profusely. She hugged me back just as tightly, telling me she understands and to know I've got her in my corner. It was exactly what I needed to hear. This morning, before rounds, Dr. G came in and sat down to talk for a bit. We went over changes that she wants to make and we discussed what the future might look like with regards to medications. She will be gone in 12 days, so her goal is to get Joshua set up with someone who is going to be helpful to Dr. S. I am deliberately trying to NOT think about the day Dr. G is gone because that thought makes me very sad. She's been wonderful to Joshua & me. It's going to be hard to see her go. Anyway, she & I kind of went over the plan for what we'd talk about in rounds and then the other doctors showed up & it was time to go out of Joshua's room to join them.During rounds, I told the doctors that for the past 3 days, I had gone along with their plan of not giving Joshua any behavioral meds so they could determine whether his agitation was caused by neurotoxicity, but now I'm done and I believe it's obvious that no, his behavior has nothing to do with the fentanyl he was on. Dr. L surprised me by admitting that he's not good with behavioral issues in children (it was a surprise that he admitted it, not that he isn't knowledgeable about the topic ~ I'd ascertained that already) but he agreed with my assessment and asked me who I thought we should contact to get Joshua the help he needs. He then included me in the other decisions made and asked if I was okay with each one. It was nice to be included in all of that versus standing there listening to the team make decisions for my child without my input.Today's changes include: ~ Two of the three methadone doses will be reduced.~ Ketamine staying the same.~ Dilaudid basal rate staying the same. Increase frequency with which Joshua can get breakthrough doses.~ EKG to check his QTC length (to gauge the severity of risk of a fatal arrhythmia)~ psychiatrist evaluation ordered to help determine what behavior medication "cocktail" should be implemented. That won't happen today (the eval), but they got the request in the system.~ Seroquel to be given as needed and if the initial dose is not sufficient after 1 hour, he can have a second dose.When Joshua woke at a little before 4pm, he was immediately grouchy and uncooperative. After the nurse & I had to wrestle him to give 4pm meds, we unanimously agreed to give him seroquel to chill him out. When it kicked in, Joshua went from telling the nurse he didn't like her and to get out and never come back to giving her a hug, politely asking for some strawberry ice cream & thanking her when she handed it to him. She brought the charge nurse in to validate the difference she was seeing, then wrote a long chart note documenting the drastic 'before' and 'after'. I almost cheered. Vindication feels *good*!We are currently watching 'Despicable Me' and Joshua is perfectly content to let me sit on my pull-out bed 6 feet from him while he lays in his bed. He is being sweet and reasonable and everything is so much better than it has been for the past 3 days. I am so thankful for the PICU doctor & nurse that God sent my way last night and for the help they gave me to get Joshua what he needs. I feel like there is hope again and that's worth everything when walking this road.August 31, 201313 hours ago?Those of you praying for a happy Joshua ~ please keep praying because right now, the happy Joshua appears for awhile, then disappears again and is replaced by a very unpleasant version.We're not giving him scheduled Seroquel right now. I think it is because the doctors want to evaluate how much of Joshua's agitation is caused by neurotoxicity from medication & how much is caused by condition progression (both cause brain cell death, which means the agitation can be caused by either or both). I'm at the point of wanting to cordially invite the doctors to sit in this room with Joshua for 24 hours so they can truly evaluate his level of agitation and over-the-top controlling bratty behavior. Really. Let THEM deal with him for a couple of hours. Even when he seems happy, it only lasts for as long as everything goes his way.?The medication changeover is going great. He is stable and that's great. But he is not "happy". Taking THIS Joshua home would not be something we could sustain. He is requiring constant intervention to keep him content and the happy moments are so weird and NOT Joshua ~ he does this baby voiced baby talk and is clingy and over-the-top lovey, which sounds sweet, but isn't after awhile because it's unnatural. He is often belligerent & rude & acts like a total jerk (to be quite blunt about it). There are occasional bursts of time where he's content, chilled-out and more like himself, but they're the exception rather than the rule. I don't want to take him home like this. So if you're praying, please pray that the nurses will recognize that this behavior is totally not normal for this kid and that the doctors will want to help manage this aspect of Joshua's behavior versus being satisfied with simply controlling his pain. Yes, pain control is imperative, but we need to be able to live with him, tooAugust 30, 2013Written 1 hour ago by Kate ParkerTwo weeks ago, I wrote that I'd been told that we were probably at the beginning of the end. Joshua was having many signs & symptoms that typically indicate that death is near and the palliative care doctor believed that he did not have much time left to live. On Tuesday, after being told that Joshua would have to go to Portland to be admitted to the PICU for medication management, Charley asked our pediatrician if Joshua was going to make it back home and she answered that she did not know... that she could not guarantee anything. Dr. G had said that if Joshua came to Portland, he would most likely die in the hospital. When Charley and I sat down with the whole team on Wednesday afternoon after admitting Joshua to the PICU, we were told about the significant risk for cardiac arrest or respiratory failure associated with the medication changeovers that were planned and we signed a new DNR accepting the risk that these medications could have a secondary effect of death. The chaplain informed us about self-transporting Joshua's body back home in the event of his death. Everyone truly thought we were at the "this is it" point.Now the picture has changed. With the changeover in medications, Joshua's agitation has lessened. What the doctors had thought to be terminal agitation ~ a sign of impending death ~ has now been revealed to be a side effect of the high doses of fentanyl Joshua was getting. Nothing else about him has significantly changed, but he is no longer believed to be imminently dying. Dr. G & her nurse said that once again, with *once again* being the key phrase here, Joshua has gotten close to the edge, looked over, then taken a u-turn and backed away. Does he still have a life-limiting chromosome abnormality? Yes.Does he still have severe chronic pain? Yes.Does he still face continuing decline in function as time goes on? Yes.Does the neurosurgeon still say she can not do anything more, surgically, to help Joshua? Yes.Does he still have gut dysfunction, bowel dysfunction & bladder dysfunction? Yes.Is he still eating and drinking very little (11 ounces of fluid yesterday... 6 ounces thus far today)? Yes.Is he still going to die a whole lot sooner than the average child his age? Yes.Could he still experience a sudden fatal event, with his brain stem herniating out of his skull or his breathing stopping or his heart stopping due to either his brain stem dysfunction or medication side effects? Yes.Does anyone have any actual idea when Joshua will die? No. And that, too, is the same as it's always been. Joshua is a child with a rare condition and there's no literature available to tell us what is going to happen next. His team of doctors is *excellent* and he has stymied them repeatedly throughout the years. He zigs when they expect him to zag. He has opposite reactions to what is anticipated will happen. The end result is this insane roller coaster that we are on. We can look at his symptoms and make guesstimates, but they aren't always accurate. For example, Joshua eats & drinks very little. The average child could survive for a couple months on "bites & sips". Does that mean Joshua could die in another month or two as a result of malnutrition? Yes. Can the doctors say with certainty it is going to happen? No. Despite eating & drinking very little, Joshua's labs don't look like a severely dehydrated child and he has managed to gain weight some weeks while losing weight other weeks. That is NOT what anyone would anticipate seeing, but that is what is happening with my son. Why? No one knows. They guess that his metabolism is whacked out now, but again, it's just an attempt to make sense out of weird things that we all see taking place and no one really knows for sure.The palliative care doctor told me she takes full responsibility for giving misleading information ~ for saying that she thought Joshua had only a couple weeks left to live. I told her I was not upset with her and I'm not. We all work together to manage Joshua's symptoms and when the body of evidence appears to point in one direction, the doctors draw conclusions. Sometimes, like this time, they are wrong. They're doctors, not God; therefore, they're not infallible despite their best efforts.So where does that leave us? Well... pretty much exactly the same, just breathing easier at knowing that the "this is it" time is not upon us. For whatever reason, it's not Joshua's time to go to heaven yet (no matter what he seems to think) and God is granting us more time with him here. As difficult as Joshua can be at times & as challenging as it is to live this life, I am not sad to have more days with my little boy. Please know I never wanted to stir up people's emotions unnecessarily. That was *never* my intention. I hope people understand that sometimes a child is expected to die and for whatever reason, they veer away & improve enough to make everyone realize that nope, it's not happening just yet. That's what happened with Joshua & no one had any way of knowing that it was going to occur.I genuinely appreciate the help that has been given to my family. It IS enormously helpful to have assistance with meals up here & groceries back home. The money that has been raised/is being raised for Charley to be able to take time off work for 4 weeks after Joshua dies (the fundraiser "the other Kate" started a few weeks ago) will not be touched until the appointed time.Again, nothing has changed in Joshua's overall picture, but the immediate situation is different than we thought and we are no longer concerned that Joshua will die imminently. It could still happen that he has a sudden fatal event, but barring that occurring, he will go home and we will continue on as before, doing our best to keep him comfortable and peaceful for the remainder of his life.Aug 27, 2013 5:31 PMThis is Kate Parker's friend, AKA "the other Kate." I just got off the phone with Kate and she asked me to update you guys on what is going on. In a nutshell:-- The hospice director from the hospice that was supposed to admit Joshua today has said that he is "too complicated" for hospice and they won't admit him. Seriously.-- Their pediatrician is willing to manage Joshua's continuing care BUT needs someone willing to make the suggestions and recommendation for her. This isn't a negative or unusual thing. Pediatricians just don't typically see many children with these types of overwhelming needs and they rely on palliative care doctors, pain specialists, hospice doctors, etc. to guide them. With hospice bailing, Dr. S has no backup or guidance.-- Joshua is being admitted to the PICU in Portland tomorrow morning. He's being direct admitted by an AWESOME intensivist who was willing to step in today when pretty much no one else could or would. The hope of all involved is to get Joshua's meds optimized and write a very comprehensive plan for the pediatrician so that Joshua can come home under Dr. S's care.-- While this sounds good on paper, the Parker family has been told that it is highly likely that Joshua will die in Portland. This is horrific - for the family not to be there, for Kate to have to drive 4 hours home and leave him in a hospital morgue, etc. I'm also the mom of a terminally ill little boy - trust me when I say this is the stuff that nightmares are made of.-- For Joshua to come home, the doctors will need to be willing to make a VERY detailed flow chart covering every possible symptom and contingency. He also needs to be stable enough to survive the 4 hour drive home.Obviously Kate doesn't have time to write this update herself. This family really, really needs your prayers. They do NOT need your advice or suggestions. I KNOW this situation is just insane, and I know it's appalling that hospice would take this approach. Kate knows this too. Our own hospice nurse was here when I got the call from Kate, and she was appalled. Having said that, right now Kate's time and emotional energy need to be treated with respect. She'd love to hear that you are praying for her, but please don't leave comments suggesting that they try this thing or that thing. Their pediatrician literally told them that she'd gotten no sleep all weekend trying to think of different options and There. Are. None. right now.I'm also going to make a plea here (Kate did NOT ask for this) for any sort of tangible support you can give this family right now. They will be in a huge city and could use ANY restaurant gift cards - many restaurants do electronic gift cards and you can have these sent straight to Kate's email. She's trying to work it out so Adam and Faith can come up with her - when you've got a child in PICU, it's nearly impossible to get to the bathroom much less take a shower or eat if you don't have someone else there to help. Adam can be a go-fer and get food for Kate but I know that it would be a tremendous help to have some assistance in this area. Even a Walmart or Target card can be very, very helpful. Of course, please be holding them all in prayer. The children being left at home are going to have to say good-bye to Joshua tomorrow knowing they may never see him alive. Kate is having to drive over 4 hours with a hurting child who doesn't usually even wake up for the day until mid-afternoon. There will be nothing pleasant or easy about ANY of this. Please pray your hearts out that this doctor will be moved with compassion and willing to do whatever it takes to get Joshua home to his family right away.Thank you for your support of this precious family. Kate is a dear, dear friend and I appreciate your love for them more than I can say.Blessings,"the other Kate"1st post today....Aug 26, 2013 12:03 AMSeroquel (the anti-psychotic mood stabilizer) is not working worth a dang for Joshua today. I am ready to pull out my hair. Imagine the most unpleasant nagging toddler who is utterly unreasonable and add a bunch of defiance and demands and insults and a refusal to ever be quiet, then multiply that by about 50, and that is what we are living with. I'm told it's a combination of agitation, anxiety & the side effects of medications. I'm told it is really common (almost to be expected) at the end of life. I'm telling you that it is awful and exhausting and enough to make *everyone* in this family who is listening to him and trying to deal with this all of Joshua's waking hours (8 so far today) pray that God would take him to heaven soon because you know, it's going to suck when he's gone, so we'd rather it didn't suck before he leaves, too.Edited to add: Yes, I know it's not his fault & it's fully out of his control. I know that. And we do our best to not react and to stay calm and not let it get to us, but after being hit & kicked & shoved away & pinched & having our hair pulled & being verbally attacked by a child for whom discipline does *nothing* except incite fury for another couple of hours over the perceived offense (because in his mind, he has done nothing worthy of being disciplined for), all I want to do is get into my truck and drive far, far away. I have kids who want to jump into the vehicle and come with me. And it has nothing to do with love. We love this child tremendously. We are just worn out and hurting over this. I will be calling Dr. G in the morning & am hopeful that she can help to get Joshua back under control with something simple like a dosage adjustment.14 hours later....Aug 26, 2013 2:09 PMNo matter how caring Joshua's doctors are (and they ARE caring... and compassionate... and doing everything in their power to help me to take care of my little boy), the conversations with them are all pretty difficult nowadays. I've had numerous conversations thus far today as information is discussed & relayed & decisions are made. Some of the information has blindsided me. I hate it when that happens.My emotions are raw right now and since it's only noon and I still need to function for many more hours today, I'm not going to write everything that's on my mind. I don't want to leave people worrying about Joshua or my family, though, so this is a quick "jot" to let you know the basics of what is going on as a result of my telling the doctors about what happened over the weekend.Dr. G and Dr. W (palliative care docs) are in agreement that Joshua needs some big changes. First changes will be switching him from IV fentanyl to IV dilaudid, which Dr. S is getting all set up today in the hopes we can have the new medication by tomorrow (it has to come from Portland) and getting Joshua admitted to hospice quickly versus the slower pace we were going at (Dr. S was trying to work out having the new hospice nurses meet with the current nurses so there could be a peaceful hand-off and training session for the new nurses to learn "all things Joshua"). After the correct dosage is figured out and he's stable on that, the docs will begin tweaking his behavior meds. He'll have more added & some changed. Apparently, all of this was to be expected because this is what happens when brain cells die off at the end of life. I was told he'll be on ICU-level interventions of psychotropic & pain medications and if that isn't enough to keep him calm, they'll add in heavy-duty sedatives and just keep him knocked out until he dies. Just writing that brings tears. I am so sad and angry and frustrated and despondent and so many other emotions all coiled together inside me. I'm going to go work out on the elliptical so I don't blow up or fall to pieces. I will try to update later tonight..Top of FormBottom of Form.URGENT prayers needed for JoshuaWritten 3 hours ago by Kate Estes This is Kate Parker's friend, AKA "the other Kate."? I just got off the phone with Kate and she asked me to update you guys on what is going on.? In a nutshell:-- The hospice director from the hospice that was supposed to admit Joshua today has said that he is "too complicated" for hospice and they won't admit him.? Seriously.-- Their pediatrician is willing to manage Joshua's continuing care BUT needs someone willing to make the suggestions and recommendation for her.? This isn't a negative or unusual thing.? Pediatricians just don't typically see many children with these types of overwhelming needs and they rely on palliative care doctors, pain specialists, hospice doctors, etc. to guide them.? With hospice bailing, Dr. S has no backup or guidance.-- Joshua is being admitted to the PICU in Portland tomorrow morning.? He's being direct admitted by an AWESOME intensivist who was willing to step in today when pretty much no one else could or would.? The hope of all involved is to get Joshua's meds optimized and write a very comprehensive plan for the pediatrician so that Joshua can come home under Dr. S's care.-- While this sounds good on paper, the Parker family has been told that it is highly likely that Joshua will die in Portland.? This is horrific - for the family not to be there, for Kate to have to drive 4 hours home and leave him in a hospital morgue, etc.? I'm also the mom of a terminally ill little boy - trust me when I say this is the stuff that nightmares are made of.-- For Joshua to come home, the doctors will need to be willing to make a VERY detailed flow chart covering every possible symptom and contingency.? He also needs to be stable enough to survive the 4 hour drive home.Obviously Kate doesn't have time to write this update herself.? This family really, really needs your prayers.? They do NOT need your advice or suggestions.? I KNOW this situation is just insane, and I know it's appalling that hospice would take this approach. Kate knows this too.? Our own hospice nurse was here when I got the call from Kate, and she was appalled.? Having said that, right now Kate's time and emotional energy need to be treated with respect.? She'd love to hear that you are praying for her, but please don't leave comments suggesting that they try this thing or that thing.? Their pediatrician literally told them that she'd gotten no sleep all weekend trying to think of different options and There. Are. None. right now.I'm also going to make a plea here (Kate did NOT ask for this) for any sort of tangible support you can give this family right now.? They will be in a huge city and could use ANY restaurant gift cards - many restaurants do electronic gift cards and you can have these sent straight to Kate's email.? She's trying to work it out so Adam and Faith can come up with her - when you've got a child in PICU, it's nearly impossible to get to the bathroom much less take a shower or eat if you don't have someone else there to help.? Adam can be a go-fer and get food for Kate but I know that it would be a tremendous help to have some assistance in this area.? Even a Walmart or Target card can be very, very helpful.? Of course, please be holding them all in prayer.? The children being left at home are going to have to say good-bye to Joshua tomorrow knowing they may never see him alive.? Kate is having to drive over 4 hours with a hurting child who doesn't usually even wake up for the day until mid-afternoon.? There will be nothing pleasant or easy about ANY of this.? Please pray your hearts out that this doctor will be moved with compassion and willing to do whatever it takes to get Joshua home to his family right away.Thank you for your support of this precious family.? Kate is a dear, dear friend and I appreciate your love for them more than I can say.Blessings,"the other Kate" Written 22 hours ago by Kate Parker More phone calls with doctors and a nurse visit (last one from this nurse) and I am emotionally wrung out for the day.Things I've learned today:? switching Joshua to IV dilaudid will take a couple days to set up.? No one knows what dose he'll need, so instead of starting with a basal dose that would be a guesstimate of what he'd need, I'll spend 24 hours pushing the button on his pump to give him a generous dose of dilaudid up to every 10 minutes, as needed, to control his pain, and at the end of 24 hours, the doctor will add up how much medication Joshua required and divide the total by 24 to obtain the basal dose for the dilaudid.? If you think that sounds potentially quite miserable for my little boy, join the club.? I know I'm totally looking forward to pulling an all-nighter with a child who may not sleep well because his pain isn't well-controlled (yeah, I'm being very facetious; actually, I'd like to invite the doctor who thinks this is a good idea to come spend the day and night at my home so she can partake in this funfest).He'll be admitted to hospice tomorrow morning at 8:30am.? I don't know yet when someone will show up at our house, but I am assuming (dangerous practice, I know) it will be tomorrow since I was told the doctors are meeting at 8:30am to admit him.? No one from hospice has called me yet, so I'm not exactly sure what's going to happen.? All I know is it's going to happen soon.A few days after dilaudid is set up, there are plans to change more medications.? The new palliative care doctor felt comfortable changing multiple things simultaneously, but Dr. G overruled her by pointing out that if we change too many things at once, we won't know what is working or what isn't and we won't know what to titrate up or down. Once again, I am thankful to still have Dr. G on our team to help me advocate for Joshua.? The new palliative care doctor also "felt strongly" about greatly increasing Joshua's dosage of lorazepam "because that is the standard of care for a person who is having agitation" and I told Dr. S (she was the one who informed me of the new palliative care doc's recommendations ~ I have not yet spoken with this doctor) that I strongly disagreed with that idea because we have already learned that a higher dose of lorazepam increases Joshua's anxiety in a paradoxical reaction. It'd be great if this new doctor gets with the show & learns what we've tried and what has or has not worked with Joshua before she begins popping off with recommendations left & right.? There are more things she wants to change, but I will share each of them as they occur rather than list them out right now because some of them may not actually happen and I don't want to list everything out and stir up questions that I don't know the answers to yet.It is very unnerving to be at the 11th hour and switching all of Joshua's major medications over to new ones plus changing nurses & agencies & adding medical personnel who are not pediatric specialists and who don't know Joshua at all. It is challenging for me to trust their decisions and to know that they are making wise choices for him.? I feel like I no longer can relax and know that whatever medication change is recommended, it's an appropriate one that I can trust because I trust the doctor making the choice to start/change the dosage; instead, I feel like now I have to go back to being hypervigilant to ensure that no one screws up.? I am really hoping that everything is going to go a lot more smoothly than it could and that everyone works together to do what is best for my little boy.? If he can be kept calm & comfortable, I will deal with anything that is put before me.? Still, I wish it could be easier and that days like today wouldn't have to happen.? The nurse said that what I am experiencing is mental & emotional anguish and I thought that was the best description I've heard because it really does fit.Joshua has been doing okay today.? "Decent" was the adjective Dr. S used and that, too, is a good fit.? He is very tired and as long as we keep things low-key around him, he's tolerating the day.? I anticipate bedtime being in the next hour or so, which is good because tomorrow could be a very busy day with lots of new people wanting to meet him, so it'd be great if both of us could be as rested as possible for that.? 91 people this Sign My Guestbook | Read Tributes Written August 26, 2013 2:09pm by Kate Parker No matter how caring Joshua's doctors are (and they ARE caring... and compassionate... and doing everything in their power to help me to take care of my little boy), the conversations with them are all pretty difficult nowadays.? I've had numerous conversations thus far today as information is discussed & relayed & decisions are made.? Some of the information has blindsided me. I hate it when that happens.My emotions are raw right now and since it's only noon and I still need to function for many more hours today, I'm not going to write everything that's on my mind.? I don't want to leave people worrying about Joshua or my family, though, so this is a quick "jot" to let you know the basics of what is going on as a result of my telling the doctors about what happened over the weekend.Dr. G and Dr. W (palliative care docs) are in agreement that Joshua needs some big changes. First changes will be switching him from IV fentanyl to IV dilaudid, which Dr. S is getting all set up today in the hopes we can have the new medication by tomorrow (it has to come from Portland) and getting Joshua admitted to hospice quickly versus the slower pace we were going at (Dr. S was trying to work out having the new hospice nurses meet with the current nurses so there could be a peaceful hand-off and training session for the new nurses to learn "all things Joshua"). After the correct dosage is figured out and he's stable on that, the docs will begin tweaking his behavior meds. He'll have more added & some changed. Apparently, all of this was to be expected because this is what happens when brain cells die off at the end of life. I was told he'll be on ICU-level interventions of psychotropic & pain medications and if that isn't enough to keep him calm, they'll add in heavy-duty sedatives and just keep him knocked out until he dies.? Just writing that brings tears.? I am so sad and angry and frustrated and despondent and so many other emotions all coiled together inside me.? I'm going to go work out on the elliptical so I don't blow up or fall to pieces.? I will try to update later tonight.106 people this Sign My Guestbook | Read TributesJoshua Parker's Journal Written August 26, 2013 12:03am by Kate Parker Seroquel (the anti-psychotic mood stabilizer) is not working worth a dang for Joshua today. I am ready to pull out my hair. Imagine the most unpleasant nagging toddler who is utterly unreasonable and add a bunch of defiance and demands and insults and a refusal to ever be quiet, then multiply that by about 50, and that is what we are living with. I'm told it's a combination of agitation, anxiety & the side effects of medications. I'm told it is really common (almost to be expected) at the end of life. I'm telling you that it is awful and exhausting and enough to make *everyone* in this family who is listening to him and trying to deal with this all of Joshua's waking hours (8 so far today) pray that God would take him to heaven soon because you know, it's going to suck when he's gone, so we'd rather it didn't suck before he leaves, too.Edited to add:? Yes, I know it's not his fault & it's fully out of his control.? I know that.? And we do our best to not react and to stay calm and not let it get to us, but after being hit & kicked & shoved away & pinched & having our hair pulled & being verbally attacked by a child for whom discipline does *nothing* except incite fury for another couple of hours over the perceived offense (because in his mind, he has done nothing worthy of being disciplined for), all I want to do is get into my truck and drive far, far away.? I have kids who want to jump into the vehicle and come with me.? And it has nothing to do with love.? We love this child tremendously.? We are just worn out and hurting over this.? I will be calling Dr. G in the morning & am hopeful that she can help to get Joshua back under control with something simple like a dosage adjustment.98 people this Sign My Guestbook | Read Tributes Written August 23, 2013 1:50am by Kate Parker Today was filled with many unexpected things.? I had a call from Dr. G, who is coming back to Joshua's medical team in a slightly different role than before, We had a good conversation.? She explained what had happened to cause her to pull back last week and I felt better for having an understanding of what had changed.? When I first heard her voice on the phone this morning, I thought maybe I had misunderstood what she said during her, Dr. S & my phone conference 8 days ago, but she assured me I had understood the situation correctly.? It's just that the issue that caused her concern has been resolved, so now everything is fine, and she doesn't want to leave us (Dr. S & me) hanging, especially since she promised she would be with us to the end. I apologize for not sharing the details, but suffice to say we again have Dr. G as a resource for helping Joshua, which makes me happy because she has done a wonderful job of managing his needs for the past 8 months and I never wanted to lose her in the first place.This afternoon, I had an unexpected visit from Joshua's home health care nurse.? Our visits are typically on Tuesday, so I didn't have reason to think I'd see her today.? She arrived carrying a small box of candy that was handmade in a little shop on the Oregon coast & a ziploc bag of seashells that she had collected for me when she was on vacation last week.? I opened the bag and could smell the saltiness of the beach & ocean.? It was blissful.? The nurse knows I have missed out on multiple trips to the coast this summer when Charley has taken the kids and I've stayed home with Joshua, which is why she brought me a couple souvenirs.? Her gift made me smile, but hearing that today was going to be our last visit before hospice takes over did not.? It is hard to lose good nurses and I always hate having to say goodbye.? The nurse said we can keep in touch via texts & phone calls, so it's not like I won't talk to her again, but it won't be the same and we both know it.? I am thankful that God brought Joshua two really wonderful nurses to help take care of him these past 4 months.? I am praying the hospice nurses will be just as good.Tonight, just a bit after dinnertime, our doorbell rang unexpectedly.? I looked out the window and did not recognize the vehicle in my driveway, so I answered the door somewhat hesitantly ~ it's not like we get a lot of surprise visitors.? I was *thrilled* to open the front door and see a very special friend standing there!? Aunt C helped out by keeping an eye on the kids when Charley & I were in Ukraine.? Her husband is Joshua & Bethany's orthotist (he makes their leg braces).? We have been friends for 7 years and she is one of those people who do things like drive 40 minutes after working all day just to bring frosted sugar cookies and a real-life hug for a friend.? I don't have a lot of local friends who I am close to (I'm more about quality than quantity), but the few that I have I absolutely treasure for the special gems they are.? There is something very special about my kids' Aunt C.? Seeing her tonight refreshed me in a way that I can't fully explain, but am so thankful for.Joshua didn't have a very good day, unfortunately.? He was woken by a thunderstorm this morning and just the fact that it was still morning and not late afternoon meant he was *exhausted* and that, in turn, meant his tolerance for.... oh... pretty much *anything*... was nonexistent.? He had some spurts of contentment, but they were short-lived.? Bedtime came earlier than usual and I am hopeful that tomorrow will be a better day.? The good news is that even though he was tired and cranky, he didn't have an excessive amount of breakthrough head pain.? That is sincerely very encouraging and shows that we've got good pain management going on right now (of course, now that I say that, everything will go down the tubes ~ I say that only half-jokingly).The general consensus of Joshua's doctors & nurses is that a sudden event (heart stopping, breathing stopping) would be a beautiful thing (their words, not mine) because it would be less distressing than the slow deterioration we're seeing and it would be better than dying of malnutrition, which is where Joshua is heading since his gut no longer tolerates normal amounts of food. I don't really see a sudden event as being awesome simply because it would be traumatic for whoever was around to witness it, but I understand where the medical professionals are coming from with that perspective.? I decided tonight that I am not going to dwell on how Joshua is going to die because I know that the day & hour were ordained by God before even one had come to be (Psalm 139:16) and, ultimately, what matters the very most to me is that my little boy go in a peaceful manner without any pain or fear and I am fully convinced that request will be granted. I don't know why I have no doubt about that, but it's one of the things I feel quite certain about.? 117 people this Sign My Guestbook | Read Tributes Written August 22, 2013 10:37am by Kate Parker To answer the recurring question in the guestbook, yes, I deactivated Bethany's site yesterday. She's fine. My deactivating her site had nothing to do with her directly; I am simply unwilling to keep open a site where I am routinely and maliciously attacked in the guestbook comments.? A line was crossed yesterday and that was it. After 2.5 years of hateful commentary happening on my daughter's page, I'm done. I realize that 90% of the people who left comments on Bethany's page were kind-hearted and sincerely cared and I do appreciate that, but sometimes the other 10% is vile enough to make a mom decide that sharing publicly is not worth it.? Unfortunately, this was one of those times.Edited to add:? I am not seeking sympathy by writing this.? I honestly just wanted to answer the question that multiple people had asked in the guestbook & by putting it here in the journal, I can be sure that anyone who reads here & Bethany's page will see the explanation of why I took down her page.? That's all.97 people this Written August 22, 2013 12:48am by Kate Parker Little man slept a lot today.? The alarm on my iPod that goes off to remind me when it's time to give meds woke him at 4pm (oops!? Note to self: remember to take iPod out of bedroom in the morning), which was 17 hours after he'd gone to bed.? He wasn't quite ready to be awake, but he opted to come downstairs rather than go back to sleep, which was fine with everyone because it meant we got to spend time with him.? :)He's been in a good, albeit quiet, mood today.? We've watched movies and he drank orange soda and ate a banana Laffy Taffy & a piece of cinnamon toast.? At a bit after 8:30pm, he told me he was tired and asked to go to bed.? I'll admit, I was surprised by that, which is weird since it's not like I haven't been told numerous times that as time goes on, Joshua will sleep more.? I'm happy that Joshie was in a good mood when he was awake.? He enjoyed watching Wall-E and the Lion King 2: Simba's Pride.? We heard him giggle and saw him smile.? He was open to hugs.? So, for Joshua, it was an excellent afternoon/evening.I am still waiting to hear the plan for how Joshua will be transitioned to hospice.? All I know thus far is that Dr. S is making a lot of phone calls to a lot of people in an attempt to get everything lined up so that the transition will be seamless & as perfect as possible.? My understanding is that the change will happen in the next week.? I'm relieved that we will get to see "our" infusion nurse on Friday.? I appreciate the chance to thank her for all she's done for Joshua and to give her a hug goodbye and I know that she will want the opportunity to say goodbye to Joshua, too.? 104 people this Sign My Guestbook | Read Tributes Written August 20, 2013 1:29am by Kate Parker I don't have much of anything to report tonight.? Joshie is plodding along day to day, showing signs of decline but nothing so significant that it makes anyone stop and think, "Oh wow, this could be it."? He's sleeping a bit more than a week ago ~ about 15-16 hours out of every 24.? He's tired when he's awake, but he fights against napping.? His apnea episodes are more frequent, longer-lasting & his oxygen level drops to increasingly-lower levels as time goes on. His heart rate is occasionally erratic. He sits at the computer for hours, not always doing anything, but wanting to stay at that location, anyhow.? His other favorite place is on my lap in the recliner, where we rock & cuggle & watch movies. He drinks less than he eats and, while not fully hydrated by any stretch, manages to take in enough to keep going.? The mood stabilizer is still helping, but not as well as it did for the first 3 days he was on it.? We are seeing more agitation again and his tolerance for noise & things not going his way is exceptionally low.? I strive to keep Joshua happy so that the rest of the kids aren't unduly stressed, too.? It's a balancing act that is getting increasingly more difficult to achieve as time goes on.I am thanking God for each day with Joshua because as long as he's here, I can hold him & squeeze his hand & kiss him & smell his hair & feel his arms around my neck & listen to his little-boy voice.? When he is gone, all of those things will go with him, so even though this road is HARD to walk, I am still thankful for it because it means my little man is here with me.? That said, I do still pray almost every night for God to send His angels to take Joshua to heaven ~ whenever Joshua asks me to pray for him to go to heaven, I do.? And I mean it sincerely.? I can recognize that an event that will be good for Joshua will be bad for me and I love him enough to want what is good for him to happen. I'm not in a rush for it to occur, though, so for as long as God chooses to let Joshua stay with me, I will wring every drop of "good" that I can out of our time together.? Some days are more full of those drops than others, but thus far, I can still get at least a few good moments each day.? My prayer is that for as long as Joshua is alive, that will always be the case.111 people this Sign My Guestbook | Read Tributes Written August 17, 2013 7:12pm by Kate Parker Long phone conversation with Dr. S today. More changes are coming. Dr. G signed off Joshua's case.?Yes, after assuring me repeatedly that she would be with us for the duration of Joshua's life & that she would not break her word like Dr. T did (when he left Legacy but promised he would remain available to Dr. S for consultation), she's now uncomfortable with managing him at the doses of meds he is on, so she's done. I do understand her perspective & I respect that she knows her limits, but losing her is not something I'm thrilled about.So, at this point, if we don't want to admit Joshua to a hospital to live out the rest of his life (we don't), the only option available is to put him back on hospice. The hospice organization that we used the first time (summer/fall, 2011) is who we're going back to. A person from that organization called me and assured me they learned a lot from Joshua the last time and now, this time, they will have better protocols put in place and parameters all set up for medications and they have picked 2 nurses for him instead of just 1 and Dr. S will be collaborating with the medical director & a somewhat-local palliative care specialist so no medical decision will be made for Joshua without the direct input of the doctor who knows Joshua best and blah, blah, blah. Basically, they are saying the same crap that happened last time won't happen this time. Okay, great. I hope they mean it & time will tell on that. But once again, the team taking care of Joshua is changing, which means the nurses he is attached to are leaving & we will have to train new nurses about All Things Joshua AGAIN and that is stressful, especially right now.? Dr. S told me that she will call the home infusion company & hospice on Monday and ask if there is any way we can do a training session this upcoming Friday so the hospice nurses can watch how the infusion nurse does everything with Joshua when it comes to port de-access & re-access.? Yes, the hospice nurses know how to work with a port, but Joshua has specific routines that we follow and in the interest of trying to make the transition easier, Dr. S suggested letting the hospice nurses watch what the infusion nurse does and letting the infusion nurse train the hospice nurses on what "tricks" she employs to make these procedures easier for Joshua (because our infusion nurse is awesome & I am very sad we are going to lose her).? I thought that was a good idea and I am hopeful it will work out.? At the very least, I want Joshua & the rest of my children (and myself) to have the opportunity to tell both the home health nurse & the home infusion nurse "goodbye". I realize some people have fantastic experience with hospice, but we've tried it twice & it has sucked both times because we live in a small town where neither organization has any significant experience managing pediatric patients and neither was good at managing a dying patient who didn't follow their flow charts. Who knows, though... maybe the third time is the charm & the hospice people will have gotten their act together & will be great for Joshua. We'll see. It's worth dealing with the intrusion of strangers into my family's life if it means Joshua can stay home where he wants to be.He is having more head pain today, but each episode is still easily controlled by just one bolus dose of fentanyl.? The mood stabilizer is still helping to keep him calm, which is a relief.? I do want to clarify that Joshua is nowhere near being back to "the Joshua we know & love"... he is not "himself" anymore and we don't anticipate he will be ever again this side of heaven.? He is simply a little boy who has been drugged into a chilled-out state and still wants his mom to never leave his side and needs to be able to control everything around him in order to feel okay.? My family & I are happy to have this version of Joshua around because it is a vast improvement over the Joshua who wailed inconsolably for hours and kicked & hit us and said mean things.? But don't imagine that we have our happy little guy back.? We don't.? We have a Joshua who is medicated more-appropriately and thus infinitely more enjoyable to be around & at this point, we are thankful it's possible to keep him calm & comfortable, but that is not the same as having the Joshua from even just 3 months ago.? His brain has changed and there doesn't appear to be any way to change it back.Dr. S said that since Joshua is eating a little more & drinking a little more, he'll probably live a little longer than the 2 weeks Dr. G had predicted last week before we started the mood stabilizer that stimulated his appetite.? I asked what we might anticipate seeing happen if Joshua doesn't experience a sudden event that ends his life and was told he'll probably get more & more tired and eventually eat & drink less, which will lead to increased dehydration, which would lead to kidney failure & then the eventual shutdown of other organ systems. She said it can be a slow process, so while we are at the beginning of the end, it may take awhile.? I thanked her for telling me that.? It helps to know what things could look like if the sudden event that everyone pretty much expects doesn't materialize.? Not that it makes any real difference, but knowing the possibilities somehow makes me feel less out of control.123 people this Sign My Guestbook | Read TributesWritten August 16, 2013 1:31am by Kate Parker Things with Joshua right now are surprisingly stable.? The latest increase in fentanyl in conjunction with the addition of the mood stabilizer (which is an anti-psychotic) has resulted in achievement of our primary goal:? to keep Joshua comfortable & calm.To look at him, you wouldn't think he was close to death.? He's more tired and has slowed down, but he is not sleeping around the clock ~ he's awake about 9 hours a day.? Interestingly, the mood stabilizer is stimulating his appetite, so he is eating more.? Unfortunately, eating still causes his stomach to hurt, but that pain does not always deter Joshua from asking for food.? He is not eating enough to thrive, but he is eating probably double what he's been consuming each day during the past couple of weeks.? I think his doctors were basing their prediction of Joshua having only 2 weeks to live off the fact that he hadn't been eating or drinking much.? Now, though, with the sudden interest in food again, I wonder if he will live longer than the predictions.? After all, Dr. G told me at the beginning of this month that a child could live for up to a month on sips & bites.? Now that Joshua is ingesting more sips & bites than he's been doing for the past 2 weeks, will that result in more days of life?? Only time will tell, I know.There is, according to Joshua's doctors & pharmacist, a significant likelihood that the mood stabilizer he is on will interact with one of his pain medications and cause a fatal heart arrhythmia. That might be part of the reason I am being told that Joshua's life is not going to go on much longer.? I hesitated mentioning this because I didn't want to have to field questions about why would we give him a medication that we know has the potential to interact with another medication and cause a heart attack.? The short answer to that is this:? Joshua *needs* to be on a mood stabilizer because of the severe agitation & distress he was experiencing (anti-anxiety meds were not enough.? He is still taking those, as well). He also *needs* the pain medication he is on and no, we can't simply switch him to something else because it would not matter ~ all mood stabilizer medications interact with pain medications, and the pain meds interact with the other meds he takes (ie: methadone interacts with zofran). In terminally-ill patients, it typically gets to a point where a person is receiving multiple medications that have the potential to interact badly with each other, but because the person is going to die anyway, the benefit of controlling the symptoms outweighs the risk of the potential drug interaction.? That may seem harsh, but that's the blunt truth of the way it is and that is where we're at with Joshua.? At this point, I don't really care what we give him so long as our end goal of keeping him comfortable & calm is achieved.? It's not like I have to worry about long-term effects of medications and it's not like we are robbing him of months or years of good-quality life if he does experience a negative drug interaction.? It's also not like we would ever know for sure that it was a drug interaction that led to his death.? It could just as easily be his brain stem, so... shrug... as awful as it may sound, I'm okay with him being on the meds.? Calm, mellow Joshua is much more enjoyable to be around than angry, hurting, screaming insults Joshua.? It's worth it to have the chilled-out Joshie here for however long he has left to live.At this point, no one knows how Joshua is going to die.? He could have a sudden event ~ either a heart attack caused by a fatal arrhythmia brought on by a medication interaction OR cessation of breathing & heart beating caused by the sudden displacement of his brain stem into his spinal canal.? He could experience apnea caused by his brain stem ceasing to function properly & the lack of breathing would eventually also cause his heart to stop beating & he would die.? He could also experience bradycardia that is severe enough to affect his oxygen level and then his heart would stop, followed closely by his breathing stopping, as well.? Truly, no one has any idea.? There is no body of literature that the doctors can read & then say, "Okay, the other 200 people who had this condition had this & this & that happen and then they died of this event."? Nope.? There's no literature.? No studies.? No one else with this who we can look to to glean ideas of how this might develop.? As such, the doctors are doing their best to guess based on the symptoms Joshua has and how he behaves.? Then they tell me what they think... and then Joshua does his own thing and leaves us all wondering what is going on inside that little body of his.? It is a crazy emotional roller coaster.? No one in my family (including me) wants Joshua to die and we don't want to have to live without him, but we also don't want to see him existing in this limbo of "not really living, but not actively dying" for an endless time.? The world is going on around us, but we can't join in because even though there are still children to be fed and groceries to shop for and laundry to do and dishes to wash and orthodontist appointments to keep and school to prepare for and bills to pay and a job to work at (Charley & Adam), there is a little boy who doesn't want his mommy to leave his sight & wants her to stay with him even when he sleeps and that little boy could die at any moment, quite literally, so everyone wants to be physically close to where he is and they want to love on him as much as possible and when they go to bed at night, they say "Goodnight" as though they are saying "Goodbye".? It is an **incredibly** difficult place to be, emotionally and mentally.? For the sake of my children, including Joshua (who still asks me to pray every night that the angels will come to take him to heaven), I hope God does not let this drag on & on.? Joshua is ready to not hurt anymore, to be port-free & shunt-free & g-tube-free and scar-free.? He is ready to run & play & be happy once again.? And as agonizing as it is to even *think* about what that means for me ~ a life without Joshua physically present ~ I can't beg God to let him stay.? It will be horrible to lose my baby boy, but I keep telling myself that accepting that this is better for Joshua and that he'll be happy while he waits for the rest of the family to join him in heaven will somehow, hopefully, help me after he's gone.? I don't think it's actually going to work, but it's the lie I'm telling myself because it's what is helping me to get through what we're going through now.114 people this Sign My Guestbook | Read Tributes Written August 14, 2013 1:14am by Kate Parker (1 of 2 ~ please read the journal entry below this one, too. I posted it about an hour ago and then had this happen and needed to post again.)My God is able to do exceedingly, abundantly more than I could ever ask or imagine. Want proof?Joshua stood up an hour ago & announced, "I want to do a hand casting." As Adam & I prepared the alginate, Joshua told me very seriously, "This is the last time I will do this with you, Mommy."This is the result. I cried as I peeled the alginate away from the plaster and saw the perfection of my little boy's hand in mine. A memory of this day that I never anticipated getting... I never thought to ask the Lord for it, yet He knows me & what would warm my heart. Thank you, Papa, for this gift on top of so many others today. 159 people this Sign My Guestbook | Read Tributes Written August 14, 2013 12:30am by Kate Parker (2 of 2 for August 13, 2013)Today's phone discussion with Dr. G was a tough one.? We are having the phone conference with Dr. S tomorrow since Dr. S couldn't carve out enough time to do it today, but Dr. G talked with me for 25 minutes about the next steps we are taking to get Joshua comfortable and calm.She increased his fentanyl again.? The basal rate is now almost doubled from what it was yesterday morning.? Joshua can now have bolus doses every 10 minutes, if needed, as well.? That increase helped him to do much better in the pain department today, which was a relief.Dr. G also recommended Dr. S prescribe Joshua a mood stabilizer since the anti-anxiety medication he is getting has not helped and, as we've increased the dosage, has actually worsened his behavior & anxiety & mental/emotional distress. Very unfortunately, however, the risk of drug interaction between any mood stabilizer and one of the pain medications Joshua is on (and cannot be taken off of) is significant.? After much intense discussion where every angle was considered, I agreed with the palliative care doctor that giving Joshua this medication was the compassionate choice.? At this point, he is completely miserable and that makes everyone else miserable.? The mood stabilizer carries the potential to give Joshua some calm and peace for his remaining days.This afternoon, I posted a prayer request on Facebook.? I wanted to post it here, as well, but truly did not have time to do so before I had to go out to pick up a new pulse oximeter since Joshua's stopped working at 1am last night (it was still under warranty, thankfully).? What I wrote was this:"I had a 25 minute conversation with Dr. G about Joshua. We are starting a medication that has very significant risks associated with it. I will elaborate later ~ I have to run and don't have time to do it right this second ~ but I REALLY wanted to ask you to pray for something specific and incredibly important: please pray for the time the children and I will be spending with Joshua tonight to be a time where Joshua will be able to be calm and loving and, most importantly, where he will be able to express to each brother and sister what is in his heart (his feelings of love for them). I am not being melodramatic or overdramatizing this ~ it is that serious ~ please pray for tonight... for God to touch Joshua and enable us to have 30 minutes or more of the Joshua we know & love... not the Joshua that he has become. It has to be tonight. And it will take an act of God to make it happen. I know this and I am believing it can happen and that God will grant us this enormous gift.Like I said, I will explain what has changed and what is going on later today. Please... please just pray for this. If you never pray for my family again, please ask God to grant us this request."About an hour ago, I posted this update:"God answers prayers. I know this because He answered ours. Joshua has been uncharacteristically calm & pleasant tonight. He has been sweet, loving, generous (asking me to please go to the store to buy treats so he could give them to his brothers and sisters because he loves them so much ~ yes, I got him everything he asked for). He has proclaimed his love for everyone individually. He is hugging and accepting hugs & kisses from everyone. He apologized for telling me he did not love me anymore last night, saying that when he said that, he did not mean it and that he really does think I am the best mommy in the world and he loves me forever (he's NEVER remembered that he's been hurtful... this is the first time he's acknowledged that he said unkind things, much less apologized for it). Right now, he is playing quietly with Isaac, his best friend. He ate an entire ice cream "drumstick" without complaint of belly pain. God has given my family the gift of this night. Thank you for praying and asking Him to do so."We seem to be at the beginning of the end. What that end will look like and what day it will occur is only known to God, but Joshua's doctors believe his remaining time is very short (maybe a couple of weeks). My family is grateful for prayers during this very difficult time as we soak up every moment possible with Joshua and try to keep functioning despite knowing what is coming.100 people this Written August 12, 2013 7:24pm by Kate Parker I spoke with both Dr. G (palliative care) & Dr. S (pediatrician) today. Dr. S is out of town until tomorrow, so the only definitive decisions made today were to schedule a phone conference between the 3 of us tomorrow morning and increase Joshua's fentanyl ~ basal rate by 40% and bolus dose by just 10% (since we did a big jump last Friday). Dr. G is concerned that Joshua's body may not be metabolizing methadone effectively anymore due to his becoming tolerant of it. We will (probably) trial IV methadone to see if it IS still effective, albeit not through his gut, and if it does not work, he will have to be switched to a whole different class of medication ~ specifically, Ketamine. That drug freaks me out because I've seen Joshua on it and it was not a pleasant experience for Adam & me when we did because he hallucinated & kept trying to get out of bed because he didn't feel any pain and therefore thought he was fine to move around despite being tethered to many machines (in PICU, November, 2011).? He was out of his mind & not coherently communicative... it was not a medication I ever wanted him to need again. Read this for a brief intro to Ketamine if you are interested: . G is also planning to start Joshua on a low-dose anti-psychotic (mood stabilizer) in addition to the ativan since he is still so agitated/anxious/distressed during his awake hours. She is hopeful this will help keep Joshua much more calm.She said her goal is to get Joshua as comfortable as possible, as pain-free as possible (knowing 100% pain-free status is most likely not going to occur), as quickly as possible so that we (his family) can have peaceful time with him for however long he has left to live. Charley & I are in agreement with those goals. The side effects of achieving those goals are not insignificant, but we are at the point where we all agree there is no other compassionate choice.? I'll update again tomorrow after I speak with the doctors.? Thank you for your prayers & caring for Joshua & my family.? Your support at this time is invaluable to Charley & me.122 people this Sign My Guestbook | Read Tributes Written August 12, 2013 1:21am by Kate Parker Joshua had a 20 minute bout of not being able to swallow last night. He literally could not make himself swallow and he was completely freaked out by it. Tonight, he had a 10 minute episode of not being able to open his eyes. No matter how much he tried, he couldn't make his eyes open & then stay open. I'm thinking this is definitely caused by his brain stem but I don't actually know for sure.I will be calling Dr. G in the morning to request that Joshua be transitioned from oral methadone to IV methadone because the ever-increasing doses of oral methadone aren't doing a blasted thing to help Joshua and I suspect it is because his gut isn't absorbing very well anymore. Dr. S said she is fine with the idea of changing Joshua over to IV methadone, but we need palliative care to be in agreement before Dr. S will do it because she (Dr. S) needs dosing instructions from Dr. G.Please pray for me to have the right words and for Dr. G to have wisdom about what would be best for Joshua, and if IV methadone is not the best choice, that Dr. G would have an idea of what we should do, instead.? We need to find something ~ or a combination of things ~ that will give Joshua (and, consequently, the rest of the family) a break from the anxiety, pain & misery he is enduring.? Tonight, as I was rocking him in the recliner, he was crying as I quietly sang, "You Are My Sunshine," which is one of "our" songs (I substitute "Joshie" for "sunshine" in the song).? When I finished, Joshua hiccuped, then tearfully told me, "Your Joshie is sad and in pain."? Broke. My. Heart.? I am now a mom on a mission.? My goal for tomorrow is to get a plan in place, if not put into effect (which would be ideal), to make positive changes for Joshua ASAP.? I am reminded of Dr. W's words (neurosurgeon) at the end of October, 2011, when Joshua was in tremendous pain & she told me, "I can't stop him from dying, but he doesn't have to die like this."? That's what I am thinking now:? I can't stop him from dying, but he should not have to die like this.? I KNOW something can be done to make this easier for him, so tomorrow is the day to make some calls & make it happen.126 people this Sign My Guestbook | Read Tributes Written August 10, 2013 12:31am by Kate Parker It has been a very hard, very sad, very emotionally taxing day. Joshua has been having pain that awakens him earlier than his body is ready to be up. The result is that he is out of sorts and on edge, which is never a good thing on "poke day" (when his port is de-accessed & the needle & dressing are changed). By the time his nurse came over this afternoon, Joshie had been agitated and unhappy for several hours.The de-accessing & re-accessing of his port went surprisingly smoothly, but immediately afterward, with his head hurting because he'd been without fentanyl for 30 minutes & both a clinician's bolus & a regular bolus not enough to get him comfortable again, Joshua had a complete meltdown. He laid on the couch, crying and wailing, "My head hurts!.... My head hurts very badly!... DO SOMETHING!... If you love me, then help me!" Nothing the nurse & I tried made a difference; in fact, even the gentlest touches were interpreted as painful, so when the nurse touched Joshua's ears, he shrieked and then cried about how "D hurt my ears!" The nurse sat with me and experienced the complete helplessness that I feel every single day of pushing that fentanyl button as often as it's allowed and seeing it not help while listening to a little boy in agony. Eventually, she called the pediatrician and got verbal permission to reprogram Joshua's pump so he could get more fentanyl per dose. The higher dose, combined with 2 more smaller doses, finally got Joshua's pain under control and he stopped wailing and closed his eyes for a short rest. I thanked our nurse for staying to help me get Joshua through the crisis. I think it was eye-opening for her. Not that she's never seen a child hurting severely, but I have told both of our home nurses & Dr. G & Dr. S how Joshua has upwards of 6-8 hours of misery each day and I don't think anyone realized just how BAD it actually is. And yes, it IS bad. It's awful, actually. If he's not crying because his head hurts & accusing me of not loving him because I won't do anything to make him not hurt anymore, he is angry & biting everyone's heads off with mean-spirited comments. It is like a serrated knife being twisted in my chest to see my little boy like this and not be able to help him. Dr. G, Joshua's palliative care doctor, called early this afternoon and listened to Joshua being unpleasant. I talked over his grouching for about 10 minutes and then he began loudly insisting that I whisper because I was hurting his head by talking, so I extricated myself from under my child's body (he was laying on me in the recliner) and when he protested, I lied and told him I needed to use the bathroom because that's the only thing that he'll "let" me leave his sight for. I locked myself in the bathroom and was able to finish my conversation with Dr. G. She told me that she had been trying to give my family a few more "good days" with Joshua but she could tell that was not happening. I told her that unfortunately, we were only getting short-lived good moments now. She said she could hear that. We talked about how the bulk of Joshua's awake hours were spent with him being upset, agitated, frustrated, anxious, micromanaging everything and everyone around him, and always hurting with head pain and other body aches & pains. Dr. G said that since the 'good' is so fleeting now, it is time to resume aggressive efforts to give Joshua peace from his suffering. As such, she increased his methadone, fentanyl and ativan & added breakthrough doses of ativan that we can give in-between the scheduled doses, if needed. Dr. G told me our goal is to help Joshua's pain be as mild as possible & to keep him relaxed and calm. If that can happen with him staying awake, that would be great, but the odds are higher that he will begin sleeping a lot more and that is the price we have to pay to manage his condition progression & the symptoms it is causing. I thanked Dr. G for her help, hung up the phone, then had a small fall-apart in the privacy of the bathroom before hearing Joshua yelling down the hallway, asking if I was done yet because he needed me to come cuggle with him. I took a deep breath & wiped my face, then opened the door & went back to my boy.I am pretty sure that my emotional pain equally matches Joshua's physical pain. I don't want him to sleep all the time, but oh, how I don't want him to hurt like this anymore, too! If the only way to protect him from the pain is to drug him to sleep, then what choice do we have? None. It is a devastating place to be. Imagine listening to one of your children crying in pain & begging you to help them, to do something to fix the situation, while knowing the only thing you can do (push a button on a pain pump) takes multiple doses spaced 15 minutes apart before there is the beginning of any relief. Then imagine listening to that for hours every single day. If you can envision what that is like, then add in your other children listening to their sibling wailing in agony & them trying to say/do things to help and you having to ask them to stop, to leave their sibling alone because he is made more agitated by their voices/hovering, and then not being able to attend to them in *their* distress because you HAVE to focus on your severely-hurting child... and this goes on for hours. Every day. It is heartbreaking. And emotionally, psychologically & physically exhausting.I'm so sad. So achingly despondent. My precious little boy is inching closer to death each day. My other children are hurting as they watch the dying process. The world swirls around us, but we are not part of it for this season in time. If it were not for Jesus, we would not be able to go on each day. But with Him, "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." (2 Corinthians 4:8-9) I get up each morning and find strength to make it through the day only because God gives me what I need to do so. I understand that some may think God is a jerk because He is allowing Joshua to suffer instead of taking him to heaven. I understand thinking that, but ultimately, I fall back on my belief that God appoints a specific number of days for each person's life and for whatever reason, He still has days allotted for my sweet boy. So until the time the Lord sends His angels to come get Joshua to escort him to heaven, I will thank Him for the good moments that come, thank Him that good moments DO still happen, and thank Him for Dr. G helping me to give Joshua as much comfort & peace as possible. 142 people this Written August 7, 2013 11:14pm by Kate Parker Before I update on how Joshua is doing, I want to say, "Thank you!" to one of my moderators (Kate E.) for hijacking this journal to give ideas of how people can help my family during this difficult time & in the first weeks after Joshua goes to heaven.? Charley & I really do appreciate it!? And thank you to everyone who has contributed to the fundraiser Kate E. started.? It means so much to me to know how much people care about my family through reading about Joshua's life.? THANK YOU!!!!!Joshua is sleeping more, which is to be expected.? He wants me within touching distance at all times and yesterday, after I had snuck out of the house while he was sleeping to run one errand and he was accidentally awakened by two of his siblings (of course) & had a screaming, hysterical meltdown because I was not there, I was informed that I could NEVER leave him again, not even when he was sleeping.? I was also told, by a different child, that I can never die because listening to Joshua screaming, "I want my mommy! Get me my mommy!? Where is my mommy?" truly broke her heart and she never wants to experience that with a child again.? *sigh*? So, yes, I am now "grounded" and do not go out unless Joshua comes with me, and considering his ability to tolerate outings is very, very low, that means I am staying home.? I am happy to be with my little boy, but having a limited ability to go out without him falling apart brings challenges since I DO still have other kids in the house who have legitimate needs and things like grocery shopping & doctor appointments for Bethany are now not easy to get done.? I'm not trying to sound like I'm complaining.? Really.? I am just trying to share the truth of what living with a child who is at the end-stage of life can be like.? All of those little things you probably don't think much about ~ like showering or going outside to get the mail or doing laundry or using the bathroom when you'd like to ~ become more difficult or even impossible at times.? This is where having a large family is helpful because everyone chips in to get the work done so it doesn't all fall on me, and that is a good thing since I am often stuck in one spot for hours with a sleeping child laying on me (who will wake up if I dare to try to move away from him).? And, admittedly, I enjoy holding my sleeping boy.? I know I won't be able to do this for a lot longer, so I am soaking up every moment that I get with him.He is also experiencing more belly pain, especially when we give him medications through his g-tube. As his gut slows down more & more, it is probable that he will eventually stop tolerating enteral medications.? I spent time on the phone with both Dr. G (palliative care) and Dr. S (pediatrician) yesterday, discussing what we'll do if/when that situation occurs.? It was agreed that if/when Joshua stops tolerating medication through his g-tube, we will take him off two that won't be necessary anymore and then switch him to IV for the rest.? I don't have a time frame for when that might occur, but I spoke with the infusion pharmacist, who assured me he has IV methadone in-stock and is setting some aside for Joshua 'just in case', so if we have to make a fast switchover, it won't be a problem.I want to thank everyone for their prayers regarding Joshua's interaction with his siblings.? Yesterday morning, he greeted David, Sarah & Isaac with a cheerful "GOOD MORNING!" and welcomed gentle hugs from them. They all sat together watching "Ratatouille," and then Joshua played with Isaac for a few minutes before needing to rest. Tonight, he told each of them that he loves them forever and he hugged back when they hugged him, which meant my 3 Little Pigs (our family's affectionate term for David, Sarah & Isaac) went to bed with smiles on their sweet faces, which made me happy to see.Joshua napped from 6pm to 8:50pm, then woke up, drank an ounce of Sprite and two swallows of water, and said he wanted to go to bed.? I carried him upstairs and, with Emily's help, got him all situated for the night.? He wants me to turn off my computer and lay down with him, so that is what I'm going to do.? Thank you, again, for the support, encouragement, understanding, prayers & tangible assistance that you are giving me (and my family).? It helps, *tremendously*, to not feel like I am walking through this dark time all alone.124 people this Sign My Guestbook | Read Tributes Here's how to help!!Written August 6, 2013 2:01pm by Kate Estes This is Kate Estes - Kate Parker is a very dear friend of mine and I asked for permission to "hijack" her page to post some things.A lot of people have been asking in comments, on FB, etc. how they can help the Parker family right now.? Kate has never been one who is quick to ask for help and has been at a loss as to what to tell people.? I spoke with her the other day and I suggested some things that might be a blessing to her family right now.? (I also have a terminally ill son, so I've got a pretty good idea of the things that can help in a situation like this!)If you'd like to do something to tangibly bless this precious family, here are a few suggestions:1.? Joshua is very clingy right now and it's important that Kate be able to spend every possible moment at his side while she still can.? It would be a blessing for her to know that dinner is taken care of.? They live in a pretty rural area, but here is a list of restaurants in their town:? Burger King? Taco Bell? Domino's? Sonic? Applebee's? Pizza Hut? Dairy Queen? Arby's? KFC? Papa Murphy's? Quizno's? Subway? Si Casa Flores? Abby's PizzaIt is a simple thing to purchase a gift card online and have it mailed or delivered electronically.? I know that several of these restaurants will do electronic gift cards (Domino's, Pizza Hut, Quizno's, maybe others).? Gift cards can be ordered for Abby's Pizza by going to .I know from experience that it is a HUGE thing to have someone take care of dinner when you are exhausted and grieving!!!2. It would also be a help to get gift cards to Walmart, Albertson's, or Safeway.? This would allow them to shop for groceries or other needed items.? I know that Kate is a very careful shopper but the blessing of a grocery gift card is that she might feel a bit more free to buy "convenience" types of foods like frozen entrees that would need little to no meal prep.? A generic pre-loaded Visa or Mastercard gift card could be used at any of these stores, for gas, etc.3.? I have set up a fundraiser for the Parker family at .? This money will NOT be touched until after Joshua passes away.? Joshua's dad is only given 3 days of paid bereavement leave from work and I would LOVE to see the entire family able to be together to support each other during what will be the hardest days of their lives.? The purpose of this fundraiser is to raise enough money for Joshua's dad to take four weeks of unpaid leave.? Please know that every single donation helps - if you can't afford a meal card, please consider giving even $5 to this fund.? I know that all of you can afford to share this and I am asking you to do so. I want to share that Kate was very concerned that people might think that they were trying to profit off of Joshua's illness/death.? I think anyone who knows her at all recognizes that nothing could be further from the truth!!? The entire family is extremely thankful for the support they were offered a couple of years ago when Joshua's death seemed imminent .? We're all so thankful that the doctors were able to do some surgeries back then to give the Parkers more time with their dear son, but there are no more tricks for the doctors to pull out of their hats.? Joshua is eating and drinking only the barest amounts (adding up to mere bites and sips per day) and all of the doctors have said that he is very, very near to the end of his battle.? Like I said, this money will not be touched until he passes away.The Parker family has not asked for any of this - these were things that I suggested to Kate.? They have done all they can to set money aside for this, but between prepaying for all of the funeral expenses and dealing with medical bills, it has been difficult.? I KNOW that if we all give a little, we can get some meals into their hands and get this bereavement leave covered!!Electronic gift cards can be emailed to kpmomof7@ and physical cards can be mailed to The Parker Family, PO Box 1546, Grants Pass, OR 97528Thank you for the way you've supported this amazing family in the past.? Please continue to keep them in your prayers and please see what you might be able to do to help with these other needs.Blessings,Kate78 people this Sign My Guestbook | Read Tributes Written August 5, 2013 2:41am by Kate Parker I don't know how I am going to survive this. I look at him sleeping next to me and think of the last thing he said before he fell asleep ("I love you forever & ever.") and the thought of not hearing that every night anymore makes me feel sick inside. I don't want to have to do this... I don't want to have to live without my little boy. I'm thankful he is still here for me to hold. I never want to let him go even though I simultaneously do not want him to suffer a moment longer than he is forced to. My head asks God to come quickly and free Joshua from the pain. My heart begs God to let me have a little more time because the rest of my life seems way too long to have to live without my son & I don't want that journey to begin.I still don't have an idea about how much longer he will hang on. I emailed Dr. S (ped) and flat-out asked if she has any idea of a time frame that she could give me. It would be helpful to know if this is a days versus weeks type of situation. Joshua ate a little more today than he has in the previous days, but the total number of calories he took in totaled about 300. He drank about 6 ounces of fluid. He wanted me to take him on a walk around the block, just the two of us, and he shared things that were important to him as we went. He told me "The angels are so shiny & bright that you can't really see them here, but you'll see them in heaven," and how "God loves us so much He is letting us live in His home forever." He said he is ready to go Home and clarified that he meant heaven, not our house. He said that when the angels come for him, he is going to go with them and then make sure they come back for me. He pointed to a flower (weed) he wanted for his collection and the blue lid to a milk container that was lying on the ground that he wanted "because it is one of my favorite colors." He spoke to me of his love for me, telling me I have been a very good mommy... the best mommy in the whole world... and that he loves me forever. He asked if I remembered the times we cuggled (cuddled) and I said I did and he told me he loves to cuggle with me because I am the best mommy and when I told him I love to cuggle with him, too, because he is the best Joshie in the world, he responded that he knows he is the cutest Joshie in the world (I did not disagree with him on that). He told me his leg likes to cuggle with my knee (he drapes one leg over mine at night as he is falling asleep... how will I go to sleep without that??? Oh, there are a million things I am going to miss about this little boy!). In the evening, he asked if Adam & I could take him out for a walk so he could tell us something important. As we walked, Joshua was quiet at first, so I asked, "What did you want to tell us?" He looked at Adam and said, "I need to tell you that I love you. I love you SO MUCH. I will love you forever, Adam." Then he told me he needed to tell me the same thing... he loves me SO MUCH. Forever. Both Adam & I assured him we felt the exact same way. We talked about other things... silly little things like what colors Joshua likes and we tried to find leaves in those colors. He found a white rock and a red one and I picked them up and handed them over to be added to the collection of 'nature things'. We talked about heaven and God and angels. We spoke of love and how much we mean to each other and how that will never change. It was a light-hearted, yet intensely serious, walk as Joshua seemed to be settling things in his head and tying up loose ends by making sure he said all the little things he wanted to say. Adam videotaped the entire 25 minute walk. I am so grateful he did.Joshie wants me to get a mine so that I can get him some gold so that he can make a trophy for Megan and he wants to write on it, "You are the best sister in the world." He wants to try going through a car wash (he doesn't remember ever doing it, though he has). He asked to go to the mini mart yesterday to try a Laffy Taffy because he never has had one (actually, he HAS... he loves them... he just didn't remember). It's odd how he randomly thinks up things he wants to do. I indulge every whim that I can. It is enough to make him happy.He is still pushing Emily, David, Sarah & Isaac away more often than not and I don't know why. Please pray that he will soften and let them love on him. Pray, too, that Joshua will respond and love them back. He has always adored his siblings and Isaac has been his best friend. It is breaking their hearts to be pushed away at this time, especially when they know Joshua won't be here for a lot longer. Please pray that he will be able to connect in a way that is meaningful for Emily, David, Sarah & Isaac before he dies. They need at least one more happy moment with their baby brother and to hear him say, "I love you."Tears are filling my eyes as I type and feel my little boy's leg pressed against mine and glance over to watch him sleeping. I don't want him to suffer anymore, but I don't want this time with him to end. When the angels come to take him to heaven, I will not beg him to stay (though I will desperately want to), but I am never going to be ready for this. I have said I'm as ready as I will ever be, but that doesn't mean anything when it's a situation no mom can ever be ready for. 136 people this Written August 4, 2013 2:29am by Kate Parker I don't know how long a child can live without eating & drinking adequately, but at this point, Joshua is ingesting only tiny amounts of food and about 8 ounces of fluid in a 24 hour time period. If he drinks more than about an ounce or eats more than 2-3 bites of food at a time, he says his belly hurts. This morning, he told me he didn't think he was going to eat or drink much today. I assured him that was okay and explained that his body is getting ready to go to heaven & it is normal to not want to eat or drink a lot when that happens. He then told me, "I'm so tired," and I replied that that is normal, too, and that if he wants to sleep, he should just take a nap. He answered, "I want to get up now, but I'll go to bed later." Afternoon came & he did nap for awhile. He wants me beside him at all times now. I'm "allowed" to use the bathroom as long as I come back by his side right away. I asked him why he needed me to be next to him all the time and he answered, "Because I think the angels know I want to go to heaven now and I need you to be with me when they come to take me to heaven. I am going to ask them if they can take you, too." I kissed his forehead and said, "Okay, I'll stay with you, and if the angels tell you that they aren't here for me, you still can go with them because you know they will be back to get me, too." Joshua thought about that for a minute, then proclaimed, "Maybe the angels can only take one of us at a time, so I get to go first and then you." I agreed with him that that made perfect sense. He settled back against his pillow, grabbed my hand and asked, "You will stay with me?" I answered, "Yes, of course I will. I won't leave you." "Do you promise you won't leave my side?" he asked with just a hint of anxiety. "I promise," I assured him. "Except when I have to go potty, I will stay with you." Joshua relaxed then, snuggling against me as he yawned, then sleepily sang, "My mommy is the best mommy ever!" I kissed him and told him, "If I'm the best mommy, it's only because you're the best Joshie in the world." My little boy smiled, then closed his eyes to rest.I know our time together here is drawing to a close. I don't have a sense of how much time we have left, but I logically know it can't be long when Joshua isn't ingesting enough calories & fluids each day and I cannot imagine a scenario where his ability to eat & drink normally returns (outside of a miracle). I'm enjoying each pleasant moment and cherishing every "I love you," from my little boy, and as challenging as it is to have to be next to him at every moment when I have other children who need their mom, too, I am thankful that Joshua wants me near & that I am getting this very special time with him. I am asking God to make the time we have remaining with Joshua as peaceful as possible & for his passing, when it comes, to be gentle & beautiful.Joshua just told me that he wants to go to bed, so I am supposed to write, "I'm sorry, but I have to go. I'll talk to you tomorrow." So... my boss has spoken. Good night! :) 123 people this Sign My Guestbook | Read Tributes Written August 2, 2013 3:12pm by Kate Parker One thing I have learned over the past few years is that if a person asks a question in a guestbook comment, others are thinking the same (or a similar) question. So, since someone was gutsy enough to ask me a fairly sensitive question in response to yesterday's journal entry, I wanted to take the time to answer it for her & all of the others who have wondered the same thing. Let me state very clearly that I was NOT at all offended, hurt, upset or bothered by the question. I totally understand it. It's a good question, and while I can only answer it from my personal perspective and am not speaking as an authority for every parent who has a terminally-ill child, I think it is a question that is worthy of an actual journal entry versus a quick response in the guestbook.The question was this: "Is it wrong of me to wish for that final peace for Joshua knowing that it leaves such pain with the rest of you to endure? Please don't take my question wrong as when I do think of that it immediately makes me feel guilty and confused." The commenter went on to add, "I think it is just hard for those of us who are not in the situation to wonder if we are thinking or saying the wrong things. So often when someone passes away from a terminal illness we think 'it was a blessing' and often I wonder to myself if that is totally wrong."Again, speaking from my own personal perspective here, the short answer would be, "No, it's not wrong." But it's also more complex than that.You can think whatever you want, but what you SAY should be sensitive to the family of the terminally-ill child. It is important that you remember that you are not privy to 100% of what goes on in the life of a family with a dying child. Especially on a site like CaringBridge or a personal blog or even Facebook, the parent who is writing is not sharing 100% of what is happening. It's impossible to do that. Think about your own life. Could you sit down at the end of a day and detail 100% of what happened during the past 18 hours and every decision that you made and the details that influenced each of those decisions? Now imagine that you are writing about a dying child & decisions associated with his care. What happens (for me) is that the important things ~ the big decisions ~ get shared, but not always the reasons for why those decisions were made. I write to inform others about what is going on & as a reminder for myself of what happened at what point in my child's journey. Readers need to understand and always remember that they do not have 100% of the information, which is why being sensitive to where a family is at with regards to their dying family member is vitally important. YOU may read things in a blog or CaringBridge page and conclude that a family "just needs to let that child go," and you may not understand why they are fighting so hard to still keep the child with them, but again, without 100% of the details, how can you possibly think you have any right to judge the decisions that family is making? It is okay to think to yourself that you don't understand why they are doing what they are doing. You can think, "I wouldn't do that to my kid." You can THINK whatever you want! But when it comes to speaking, take your cue from what the parents are saying. In my opinion, the ONLY time it is okay to tell the parents of a dying child that you are wishing/hoping/praying for their child to go to heaven is when the parents, themselves, have expressed that sentiment. And even then, you should speak gently, using words that are kind and not blunt because even though parents may be able to accept that their child is going to die, that does not mean they are anything less than devastated to know it's coming. It is okay, once a parent has shared that they are at the point that they want God to end their child's suffering, to gently tell a parent that you stand in agreement with them in wishing God would grant their child peace. You can say that you are praying for deliverance for their child or even that you hope their child does not have to endure pain any longer. It is VERY helpful to follow that sentence with something that acknowledges how difficult having that wish fulfilled will be for the parents. The person who left the comment for me expressed her thought perfectly in saying that she wished "for that final peace for Joshua knowing that it leaves such pain with the rest of you to endure." You can say to me that you hope God takes Joshua to heaven soon because I have written that my family & I are asking God to answer Joshua's prayers, which are to go to heaven. You can soothe the pain that that sentence causes my heart (because really, what parent wants to hear that people are praying for their child to die even when they know it is what their child wants?) by adding something that acknowledges how hard it is going to be for me to lose my son. You don't have to do that, of course, but it would be kind.It is not wrong to want to see a child's suffering end. It is wrong to tell the parents what you are thinking if the parents, themselves, are not at the point where they are ready to let their child go. And it is also wrong to share your thoughts in a blunt manner, such as saying, "I hope Joshua dies soon so you can get on with your life," which is what Charley was told by an elderly woman when he was at work one day last month.I think it is normal to feel both confused and guilty when thoughts of, "I wish Joshua would just go to heaven... this is so awful..." creep into your head. It feels wrong to think that about a child because no one likes the reality that children die. In our heads, it's not supposed to be that way. Children are supposed to grow up, not suffer endless pain before they die. So when you find yourself wishing that God would take a child to heaven, another part of your brain asks indignantly, "HOW can you even THINK that?" Tell yourself you can think that because you have compassion. I believe it is compassion that makes a person not want to see another person suffer, and it doesn't matter if that person is 7 or 70. The difference is that when a person is 70, you can justify wishing their suffering would end by saying, "They've had a full life." You can't say that about a 7 year old, which is where I think the guilt comes from.I'm here to say that, at least as far as my child goes, you do not need to feel guilty for thinking it would be merciful for God to take him to heaven. That is the truth; it would be merciful. I don't LIKE that it is the truth, but liking something isn't a factor in whether it's true or not. You don't need to feel badly for wishing his suffering would end. I used to feel I was a horrible mother for wanting God to let Joshua die because what kind of mother ever wishes that, right? I had a voice in my head accusing me of being selfish, unloving, uncaring, and telling me that if I was thinking that God should take Joshua to heaven, then I would never have any right to say I missed my son & wished I could have had more time with him because, after all, I hadn't wanted him when he was here. That last accusation hit the deepest nerve for me ~ the thought that I was awful because I just wanted this horrible suffering part to be over. But here's the thing: that accusing voice was not God's. The devil is our accuser, not the Lord. And satan was lying to me by twisting the truth, just as he has always done to humans. The TRUTH is that I know that after Joshua has died, I am going to be devastated and want him back because I don't want to have to live life without him in it. But you know what? I am not going to want him back the way he is right now. I am going to want him back the way he was 3 years ago, when he was healthy & strong & full of life & joyful and you know, I have already been grieving the loss of THAT little boy for awhile. The TRUTH is that being able to look at my ashen-faced son and recognize that he is only existing rather than living does not mean I am uncaring. Watching him experience pain that NEVER goes away and is sometimes excruciating & causes him unrelenting misery has broken me in a way that I don't know I will ever fully recover from. It is not unloving of me to want to see his suffering end. It is not selfish of me to be tired of living this way, in this anticipatory grief, waiting to get hit by the train that we have known is coming for 2.5 years. I never want Joshua to go away. I simply want him to not suffer anymore & the only place that can happen for him, apart from a miracle healing, is heaven. If it is not wrong for me to wish God would give Joshua peace, it is not wrong for you to wish the same thing.With regards to the last part of the comment that I am addressing ("So often when someone passes away from a terminal illness we think 'it was a blessing' and often I wonder to myself if that is totally wrong."), again, it's not wrong to think that, but I don't know any person who wants to hear those words spoken to them about their loved one. That might seem contradictory, but from my perspective, if, after Joshua dies, someone tells me, "It was a blessing that he died," what I will hear is, "What a relief for your child to not be living with you anymore.' I KNOW that is not what a person would mean when they said those words, but that is what I would internalize. I think this is hard to explain... the feeling that it's okay for ME to say that it is a blessing for Joshua to go to heaven, but to NOT want to hear others saying it. Here's an example of what I mean: when my twin brother and I were seniors in high school, we got into an argument in the hallway at school one morning. As I walked away, my brother's best friend said, "Man, Kate is being a bitch!" My brother immediately grabbed ahold of his friend's shirt and got in his face, telling him, "Don't you talk about my sister that way!" The friend protested, "Dude, you're mad at her, too!" And my brother's response was, "Yeah, but she's MY sister! I can call her a bitch. You can't!" Curt could tolerate others thinking I was being a bitch & he actually appreciated their support when he was upset with me, but he didn't want to hear them calling me names even though he would call me the exact same names. That is how it is with the whole "It's such a blessing that they aren't suffering," comment after a person dies (again, from MY perspective). I know people are praying for Joshua to go to heaven and I am okay with that. I am even okay with suspecting that people are thinking, "Omigosh, that poor child just needs to die already!" (you don't need to tell me if you're thinking that, though) You can tell me that you wish God would give Joshua peace even though you know it's going to be so painful for my family to have to go on without him. You can tell me you are praying for Joshua's deliverance, and that won't hurt my feelings. But after he dies, do not tell me that it is a blessing that he's gone. Don't tell me how thankful you are that he is not suffering anymore. Do not tell me that it is a relief to know he is at peace. Do not tell me ANYTHING that begins with the words, "At least." After a child dies, the appropriate response is sympathy and acknowledgment of the enormity of the loss for the family who now has to live without the beloved child. And while yes, it will technically be a blessing for Joshua to not be suffering anymore and for him to be at peace, I don't want to be told that because while HE will be at peace, I will be in agony. Does that make sense? I really hope so. Bottom line is, I would not advise anyone to tell any grieving person that it was a blessing that their loved one died, even if you think it was and even if you know the family was asking God to end their loved one's suffering. It's one of those things that is okay to think, but not so okay to say. If the person tells you that they're relieved God finally took their loved one to heaven, you can gently agree, but immediately follow up with something that expresses your understanding that their pain at the loss is immense. That is what I would want to hear, anyway.I understand people praying for Joshua to go to heaven. It is what he, himself, prays for every single day, and while my family will endure great pain after he dies, we are enduring pain every day already AND Joshua is also suffering. When he isn't hurting anymore, our pain will be different. I try to convince myself that knowing he isn't hurting after he has died is going to bring some kind of comfort in the midst of my pain, but I don't yet know if there is any truth in that and I am not looking forward to finding out. 98 people this Sign My Guestbook | Read Tributes Written August 2, 2013 2:31am by Kate Parker The days are a mixed affair.? When Joshua is awake, everything is centered around him out of necessity, so the other kids and I do as much "normal" stuff as we can while Joshua sleeps.? It feels wrong to be doing things without him, but that's the reality of where we're at now.? The other kids still need to have happy times, so Charley and I take turns doing things with them so they still have reasons to smile every day.Joshua is about the same.? He did get a haircut today after telling me that he needs to look good to go to heaven & wanted to know if our friend, who is a stylist, could come cut his hair since he didn't think he could make it to her "office". Tonight, she came over & now Joshua is looking adorable rather than shaggy. She gave me a handful of his hair (which I put in a ziploc) & we both cried a little after Joshua hugged her, thanked her and told her goodbye. Before she left, he said he'd see her in heaven.An interesting thing that we noticed when Joshua's hair was cut is that the scar on the back of his head/neck has widened to about 1/2 inch and is deeper than it's ever been.? My friend who cut Joshua's hair commented on it and pointed it out to me.? I looked and was surprised to see the scar is definitely "sucked in" now, just like the skin on his back.? It's caused by scar tissue that is attached to the inside of the skin pulling inward.? I can't imagine the constant tugging is a comfortable sensation for Joshie and I wonder if that is contributing to his pain.? Unfortunately, there is nothing we can do about it except take care to not touch the area (which we already do, which is why I didn't realize how wide & deep the scar had become).He said tonight that he feels a little sick and when I took his temperature, it was 100.2 degrees.? I have no idea if he actually has a low-grade fever since he can have a temp of 104 degrees without being sick ~ a result of his autonomic dysfunction ~ but it makes me sad that he's feeling sick on top of everything else.? The silver lining is that he's been cuddly (I prefer to call it that versus "clingy") and wants only me taking care of him, so I get lots of one-on-one time to love on my little boy.? If the increased temperature continues into tomorrow, I will call Dr. S to ask if she wants to have the infusion nurse who will be coming over to draw labs to evaluate for infection.? At this point, I don't know that we'd do anything, but it might be reassuring to know whether or not he's actually sick.? I don't know... I'll ask the ped tomorrow if Joshua's temp is still elevated.He is still eating some food each day and drinking by mouth, but with his inadequate intake of fluid, we are seeing a corresponding decrease in urine.? His methadone dose was increased again on Tuesday and more adjustments will probably be made on Friday.? Dr. G (palliative care) told me she anticipates having to tweak meds every few days for the duration of Joshua's life.? She said she doesn't think we'll see a decrease in the number of bolus doses of fentanyl that Joshua needs each day, but she is hoping that by increasing the methadone, we can lessen the severity of pain that he is experiencing. Emotionally, he is all over the map and there is no way to know what we are going to see.? Yesterday was a hard day overall, but today was better (overall).? I am thankful for the sweet times.? They make the difficult times easier to bear.100 people this Written July 30, 2013 1:54am by Kate Parker Things with Joshua are progressing. He is no longer getting fluid through his g-tube because it was causing him belly pain and he wanted it stopped. I was not sure about acquiescing to his request, but when Joshua began deliberately yanking on the tubing to dislodge it from the pump (causing the pump to alarm) and latching the tube, which made it impossible for fluid to get into the g-tube (which also made the pump alarm), I realized he was serious and accepted his decision. He was only getting one ounce per hour of pedialyte through his g-tube, but those 24 ounces each day were important for helping to keep him hydrated. We're at the point, though, that we are trying to respect Joshua's wishes. This is his life. He has battled through so much in his 7 years and if getting that continuous feed hurts his belly and he doesn't want to deal with it for the remainder of his life, he doesn't have to. It really is as simple as that.His sweet little voice is getting more hoarse, which is another symptom of chiari and indicates he's experiencing more compression of his cerebellum. He has desats and apnea throughout the day and his heart rate drops very low at night, which are, again, more signs of condition progression.I hit a very low point this past week as my family & I wondered WHY God was making Joshua & the rest of us go through all of *this*. Like it isn't hard enough to watch this little boy die... he has to be rendered completely miserable and utterly unlike himself before he goes? I couldn't come up with anything that made any sense and, to be honest, I thought God was being kind of a jerk because He could spare Joshua & the rest of our family from having to endure all of this, but He wasn't doing anything about it. I didn't want to talk to God. I didn't know what to say to Him, so I ignored him for a few days. Oh, I knew He was there, waiting for me, but I needed some time to be angry, so I took it.Yesterday, I tried talking to God again. I told Him I didn't know what to say, but I wish I had some idea why He was allowing things to happen the way they were with Joshie. Immediately, what came into my mind was the thought that going through this with Joshua is showing me how to truly live in the moment and how to not hold so tightly to the things that don't actually matter while clinging to the only One who is going to bring me through this to the other side in a way that will (hopefully) be a testimony to those watching. Then I felt an immense peace. It wasn't like everything was suddenly all better. Nothing about the situation changed, but with that revelation, I felt a lot better. While I don't understand God's plans, I know that I know that I know that none of this is happening without a purpose. There is a reason (maybe lots of reasons) for everything Joshua & my family are experiencing, and we don't have to understand to continue trusting that the Lord of our lives cares about every detail & is working things out in a way that will eventually turn all of this ugliness into something beautiful. Early this evening, we had a visit from Joshua's home health nurse. While she was here, conversation turned to the fires that are burning near our city & the possibility of evacuation (not a serious concern where we personally live, but the nurse lives in an area that might be affected). Joshua wanted to go outside to see the fire and I told him we could not see it from our house and right now, the smoke is bad enough that we are being told to stay inside, to which he questioned, "Why?" I explained that the smoke from the fire was making it hard to breathe outside and for a person like him who already has trouble breathing, it could be really hard. Joshua immediately responded with, "That's okay! I would be able to go to heaven!" Truly, the thought is never far from his mind.Okay, he is asking me to take him upstairs to bed, so I have to end this for now. If you are praying for us, please ask God to enable the firefighters to get control of the Douglas Complex Fire and the Labrador fire. Charley has assured me we are in the city far enough that we really should not have to worry about needing to evacuate, but the air quality is severely compromised right now (they're saying we need particulate masks if we go outside & ash is falling on our cars & all around town) and it would be a huge blessing to everyone being affected by the fires if the firefighters could gain some ground in putting the fires out. 123 people this Sign My Guestbook | Read Tributes Written July 26, 2013 6:54pm by Kate Parker Methadone has been increased again, by another 35mg/day.Ativan (Lorazepam) has been increased by 50%.Port needle & dressing change went smoothly (thank you, Lord). Total number of meltdowns in the past 4 hours? Two (thank you, nurse D, for staying to help get him calmed).Total number of blowouts? One (many thanks to Charley for taking the computer chair outside and cleaning it).Joshua's volume when he speaks is now very loud. The nurse hypothesized that maybe he can't hear himself unless he is loud. It's crazy, though, because he speaks at top volume, yet gets upset when anyone else is remotely loud. Part of it is his need to control the situation. He is incredibly, extremely, insanely controlling now. Part of it is the pitch of a voice. Higher pitches hurt his ears. Regardless, it is not pleasant to have him yelling instead of talking in a reasonable volume.He feels like there is something stuck in his throat most of the time now. He tries to eat or drink things to make the 'lump' go away, but nothing works. Why? Because that sensation is a chiari symptom. It's a lousy symptom to have, but we've seen it before with Joshie, so we know what it is. There's no way to make it go away outside of surgery and, obviously, that isn't an option, so now he has to learn to cope with this new, annoying symptom.If I sound like I'm dejected or feeling somewhat hopeless, that would be because I am. This situation is very wearing. I spend the hours from when Joshua wakes up to when the little kids go to bed trying to keep him as happy as possible so that the little kids don't bear the brunt of Joshua's negativity. That means I am catering to the demands of an unreasonable little tyrant. I LOVE that little tyrant & I recognize that none of this is his fault. I don't blame him for being angry or short-tempered or even demanding & unreasonable. I understand and I think I'd be pretty snippy right about now if I were in his shoes, too. That said, it is H.A.R.D. to parent a bratty child who can't be disciplined out of his bratty behavior.I must go. Joshua is laying on the floor telling the world that both of his legs hurt, his hand hurts, his head hurts and his belly hurts. I am not sure why he's aching all over, but he is. I am going to try to distract him a bit and find the balance between comforting him enough that he feels I am sympathizing with him but not so much that he starts crying because he's thinking about how miserable he feels.Wish me luck. 117 people this Sign My Guestbook | Read Tributes Written July 26, 2013 1:16am by Kate Parker Things that we're dealing with now that are challenging:~ Urinary retention.? A person receiving large amounts of narcotics/opioids eventually faces the side effect of having difficulty peeing.? For a child with a neurogenic bladder who can't just "choose" to go AND who has neuropathic pain in his urethra which makes cathing an excruciating ordeal, this side effect is a bad one.? We are employing lots of little "tricks" to help Joshua's bladder empty repeatedly throughout the day.? It's not easy & our hope is that God will show our little boy mercy by not allowing him to get to the point where he would need an indwelling catheter, as that would be the pinnacle of misery for him.~ Constipation.? Another side effect of the narcotics Joshua is on.? Unfortunately, he has a neurogenic bowel caused by spina bfida (same thing that caused his neurogenic bladder), so while constipation is something we have battled his entire life, the degree of constipation he now has is insane & is requiring large amounts of multiple medications to produce results. ~ Head pain.? Especially at night.? In addition to medication & caffeine (which I am aware contributes to constipation, but Joshua requests it & I am not telling him he can't have 4 ounces of Coke when he wants it), we have begun using ice packs to aid in comforting Joshua.? Despite the twice-weekly increases in his methadone dosage, he is requiring more breakthrough doses of fentanyl as his pain is increasing significantly now.~ Belly pain. When he eats and drinks, it often makes his stomach hurt.? As time goes on, he is eating and drinking less, which is to be expected, but it is challenging to have Joshua ask to eat and know that it will only cause him pain, which will then have to be dealt with (by tactics such as draining the contents of his stomach through his g-tube). Trying to explain to him that eating & drinking will make his tummy hurt falls on deaf ears, so we compensate by giving smaller & smaller amounts of whatever it is Joshua asks for.? Sometimes we even manage to "predict" the right amount he will want to eat or drink and he consumes the food or beverage without resulting discomfort, but that makes him think he can eat and drink more without it being a problem.? Trying to reason with the unreasonable can make a person want to pull out their hair.~ Perseveration.? Joshua will fixate on a question or a statement or an idea and he can. not. let. it. go.? If he decides he wants me to go to the store and buy some potato chips (so that he can eat 2 bites of one chip), he will ask, "Will you go to the store?" 1,000 times over & over & over & over & over & over & over & over &.... you get the idea.? It doesn't matter what my response is unless it is to comply with his request/demand.? If I am able to give him what he wants, I do it because it is easier than trying to reason with the unreasonable.? This is not a matter of Joshua being a bratty little kid who is making petulant demands.? He was NEVER this way until recently.? This is his brain reacting to the chromosome abnormality, the pressure of being compressed as it is pulled inexorably downward, and the side effect of the medications he gets every day.? In other words, it it out of Joshua's control.? So when he starts perseverating, I try to comply if I can because the only way to make him stop is to show him that someone is moving in the direction of fulfilling his demand.? The problem arises when he perseverates on something that we can't do anything about, like wanting me to go to the store for potato chips when I don't have a vehicle at my disposal or wanting Burger King french fries (which he'd eat 2-3 of) when the restaurant is closed.? When he has asked for something for 40 minutes and won't be distracted and realizes he isn't going to get what he wants, he gets mean-spirited and says hurtful things.? We all try to remember that it's not Joshua talking.? In fact, when something happens in his brain & he finally stops and then another 30 minutes has passed, he doesn't remember what happened and if we try to tell him how he was mean, he insists he would never do that.? *sigh*? Things aren't all bad.? In addition to the challenges, we are seeing bouts of increased affection. When Joshua is feeling cuddly, he will sit in my lap for an hour or more.? He hugs more than he has in months.? He gives kisses and is effusive in his compliments ("You're the best mommy/daddy/sister/brother in the world,") and love.? I am reminded of the nursery rhyme that said, "There was a little girl who had a little curl right in the middle of her forehead.? And when she was good, she was very, very good, and when she was bad, she was horrid."? That is Joshua these days.? Things are either VERY good or VERY bad with regards to his personality.?There really isn't a middle ground anymore.I don't want to come across as being negative or a "downer". Everyone in my family, including me, tries to focus on the positives each day & we cherish every happy moment we get with Joshua. That doesn't negate the things that are challenging, though. It doesn't make the hard stuff easier to deal with or make it all go away. In fact, the absolute truth is that the hard stuff is happening more than the good times, so we cling to each happy event and thank God that they're still occurring at all. I wish I could write that things are sublime and Joshua is at peace every minute of the day, but I've based this entire journal on fact, not fiction or the way I WISH things were, so all I can do is share what is actually happening. I don't update every day because then it WOULD seem entirely negative and that is not what I want. Like I said, it's not all bad. But, unfortunately, as Joshua's condition progresses, the good... the happy... the peaceful... the pleasant... it is diminishing in quantity. My writing is going to reflect that. 86 people this Sign My Guestbook | Read Tributes Written July 22, 2013 9:23pm by Kate Parker Dr. G ~ Joshua's palliative care doctor ~ called & we had another hard conversation. Joshua's methadone is being increased by another 30mg/day & the expectation is that he'll need another increase on Friday. She no longer holds out hope that we will find the magical combination of medications that will give Joshua the ability to be pain-free while he's awake. There *will* be a dose that sedates him a lot more than what he's currently experiencing, but we don't know what dose that will be. She has no crystal ball to see the future, but based on where Joshua is, the symptoms he now has & her past experience, she does not believe Joshua has months left to live. She told me, "I am not saying days, but I definitely don't see multiple months."I realize Joshua has outlived many doctors' & nurses' predictions thus far, but this is the first time this doctor, one who specializes in end-of-life care, has said something about a time frame.? I realize she could be wrong, but with what we are seeing every day, I highly doubt she is.? And while I know that Joshua will be happy to go to heaven (when I told him Dr. G said he'll probably get to go to heaven pretty soon, he said, "I like that!"), those of us who love him so deeply and will be left behind & will have to bear his absence are not really feeling the joy.? If you want to celebrate with Joshua, that's fine to do in the comfort of your home, but please be sensitive to the sadness my family & I are feeling and don't tell us how happy you are that Joshua gets to go to heaven soon. The Bible says that singing songs to one with a heavy heart is like taking a person's coat on a cold day or pouring vinegar on an open wound.? If you cannot be kind in your comments, please simply be quiet.?I am not trying to come across as rude or snotty ~ I'm just telling you that our hearts can't handle hearing how thrilled others are that Joshua will finally get to go Home. We are glad his suffering will come to an end, too... it just hurts so dang much to think about having to try to live without him. 121 people this Sign My Guestbook | Read Tributes Written July 20, 2013 7:12pm by Kate Parker I regret that I haven't been able to update for a few days.? Nothing significant has happened to Joshua, but I want to update with how the days are going so I can come back and be reminded of everything.? Writing it down is insurance that I won't forget.? I've had a good excuse for not coming here, though ~ I've been dealing with some big things with Bethany as of late, and between her & Joshie, I have not had enough time to sit and write. Charley asked me this morning what I had planned for the day & I told him, "I am going to update both Joshua & Bethany's caringbridge pages."? Here it is, a few minutes before 4pm, and I still haven't.? That should be a pretty good indicator of the amount of free time I have these days.? :)? As it is, I will have to go mix up 4pm meds for Joshua & attend to Bethany before I can continue on.? But hey, at least I've started.? That gives me hope I will get back here shortly to continue.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxThe past 3 days have been filled with the challenge of battling Joshua's increasing constipation and inability to urinate.? Fentanyl causes both problems, especially at the dosages Joshua is getting, and his having nerve damage to his bowel & bladder from spina bifida makes the situation worse.? We have had to greatly increase Joshua's daily doses of stool softener & laxatives in order to get the problem under control.? As of today, the situation is better.? We are now giving Joshua a full capful of Miralax 3 times each day, a Dulcolax pill (crushed, mixed in water & put through his g-tube) 2 times each day, 250mg of Colace 1 time per day and, when necessary, either a Dulcolax suppository or Dulcolax enema.? It's a lot of intervention to enable this little boy to "go," but it's imperative that he's able to do this basic bodily function.? When the nurses came over this week & I explained what was happening with regards to the constipation & difficulty urinating, both of them nodded their heads and were not at all surprised.? I have decided that this "end of life" stuff has some similarities to having a baby.? No one tells you that pushing out a baby often results in hemmorhoids and that you are going to bleed for a month afterward, so when a new mother expresses shock over these developments & the nurses/doctors nod sagely & say, "Yes, that's to be expected," the mom is left thinking, "Uh... gee... I wish SOMEONE would have told me about these little details!"? That is how I feel about the latest changes with Joshua.? I told the nurses & doctors what is happening and they all had the same response ~ a "right, this is a normal development," type of comment.? Here's a hint, people ~ TELL ME WHAT TO EXPECT!!!!!? I told the nurse yesterday that it would be really helpful to be informed what kinds of things might happen as things progress down this road and she answered that no one wants to scare a person by saying ALL the things that could possibly happen & no one knows with absolute certainty what Joshua will experience.? Okay, I understand that, but, as I told her, they could have told me what we'd see as fentanyl was increased since they know about that.? They could tell me what things MIGHT happen based on similarities they have encountered among adults who have had brain tumors or other brain ailments.? I understand it's not a guarantee that Joshua will experience the exact same symptoms.? I'm not stupid!? But dang, it's frustrating when these new things pop up and then my child is miserably uncomfortable as I try to play catch-up and come up with a solution to a problem that, had I been informed could potentially occur, I would have already brainstormed a plan of treatment for!? I tried to articulate these thoughts to the nurse.? I told her I am a person who does better with knowledge.? I'm not going to get freaked out; to the contrary, I am going to feel less apprehensive when new symptoms crop up because I knew in advance that it could happen.? One thing the home infusion nurse told me is a potential development if this slow decline continues for months is liver failure due to the amount of medication Joshua's liver is being forced to filter every day.? It's not a probable issue and I'm not stressing about it, but I appreciated her telling me that it's a possibility.? That way, it it were to happen, I would not feel like it came out of left field.Yesterday, Dr. G increased Joshua's bolus dose of fentanyl by 25%.? On Monday, we'll most likely be increasing his methadone once again by another 20%.? Despite the increase in bolus dosage, Joshua needed 7 breakthrough doses of fentanyl between 4 & 11 last night.On Thursday night, Joshua told Charley, Megan & me, "I want you to call Dr. W and tell her I want her to do that thing she said would kill me."? No one responded. We were too stunned.? Megan recovered first & asked, "You mean surgery?"? Joshua affirmed that was what he was referring to.? I told him that Dr. W (neurosurgeon) was not going to do surgery again.? He asked, "Why not?"? I answered, "Because killing a child on purpose is wrong. Dr. W isn't going to do a surgery that she knows will kill you. She doesn't want to kill you."? Joshua's response?? A matter-of-fact, "But I want her to kill me so I can go to heaven!"? Charley & Megan both told Joshua a version of, "That ain't gonna happpen, Dude.? Sorry!"? So then Joshua was quiet for a minute, thinking things through, before he piped up with, "Okay then, I want YOU to kill me so I can die and go to heaven!"? ARGH!!!!!!!? We all told him that we would not do anything to kill him.? That only God gets to decide when a person goes to heaven. Joshua got irritated with us and said in a pouty voice, "You could if you wanted to!"? His father, sister & I all said, almost in unison, "Well, we don't want to."? Joshua dropped the topic with us, but folded his hands and prayed emphatically, "God, please let me die so I can go to heaven because I really, really, REALLY want to go to heaven now!? Amen!"For the record, it doesn't matter how much Joshua asks, begs, pleads or demands ~ we will not do anything to cause his death.? We are not going to overdose him on purpose just to end his waiting and send him on his way.? I want to make that absolutely clear to anyone reading who might wonder if that is something we would do since Joshua is wanting to be done with this life.? The answer is NO. No way, no how.? We are not going to be responsible for his death. When he dies, it will be because God said that Joshua's days were complete and his time was up.? It's not going to be for any other reason than that.? I debated sharing the conversation that Joshua had with Charley, Megan & me, but I want to remember it because it's part of his life's story.? I don't want to forget how eager Joshua was to go to heaven.... he has a longing for his eternal Home in a way that I admire.? He prays all day long, about everything, without fanfare or care of what anyone around him might think.? He has a relationship with God that I want to have, too.? I don't always turn immediately to God to share the good & bad in my life.? I generally prefer to talk to people rather than Jesus.? I care what others think about me.? My son, however, has it right. He takes everything to the Lord.? He makes his requests known and he very boldly goes before the Throne of God and says what's on his mind.? I am learning a lot while I watch my son.? I hope that sharing his life helps others, too.115 people this Sign My Guestbook | Read Tributes Written July 16, 2013 1:11am by Kate Parker Dr. G increased Joshua's methadone by another 25% and the basal rate of his fentanyl 25%, as well. We'll re-evaluate on Friday ~ it takes a few days for the new dose of methadone to build up in his system ~ and if things are not better, she will increase his doses again. I'm thankful for Dr. G's caring assistance. She agreed with me that having Joshua holding his head as he says, "It feels like a million persons are hammering nails into me," is unacceptable. We *will* get his pain under control. Hopefully it will be soon.This evening, Joshua asked, "Mom, have you ever felt sad and you don't know why? I'm feeling that way. I think it's because I haven't spent enough time with you today." He wrapped his arms around my neck and began softly weeping as I pulled him onto my lap. I buried my face in his neck as I cooed and gently rocked him. After a few moments, he pulled away slightly and said, "See? If I let go, I feel sad! So I am not ever going to let go." Then he tightened his grip once more and sat with me for a long time.Later, he asked if we could take a walk again like we did last night. I told him, "Of course," and got him ready to go as Megan got her dog ready so they could come along. As we were walking, we saw kids riding bikes and scooters and skateboards. Joshua pointed and said in a quiet, matter-of-fact voice, "Look. Those boys are on scooters. I remember when I used to be able to do that. Do you remember that?" I told him yes, I did. Then he pointed again and said in a more-sad tone of voice, "Look. They are on bikes. I never learned to ride a bike. Now I can't learn." I softly ruffled his hair as I walked behind him, pushing his wheelchair, and agreed, "Yeah, I know. I'm really sorry, Joshie. I wish I could teach you to ride a bike." When he saw a yard with sprinklers going, he asked in the same sad, but factual voice, "Do you remember when we played in the sprinklers and I could run? I can't do that anymore." I swallowed hard and told him that yes, I remembered those days.We stopped at a mini-mart so Joshua could get a treat (blue raspberry Baby Bottle Pop) and as we headed in the direction toward our house, Joshua announced, "Mommy, I don't want to go home yet." I told him, "Okay, we don't have to go home," and I turned him down a side street with the intention of walking the long way home. After ten minutes or so of walking, I asked Joshua, "Why don't you want to go home?" After all, we'd been walking for almost an hour & it was now dark. His response sucked the breath out of me. "It has been a long time since we have spent time outside together. Do you remember when we used to go outside all the time? Before I couldn't go outside all the time anymore? I miss those times. Will you always remember those times with me?" Megan & I glanced at each other and I had to stifle tears before I could softly assure my little boy, "Yes, I remember those times... and of course I will always remember those days. I will remember every day with you, Joshie." Reassured, he sighed & tiredly said, "Good. We can go home now." My. Heart. Is. Breaking. 122 people this Written July 15, 2013 3:23am by Kate Parker We got home on Wednesday.? Joshua's methadone was increased by 20%, but thus far, we're not seeing any difference in his pain control, which is very disappointing.? We have spent the past several days pushing the bolus dose button for fentanyl many, many times throughout the day & listening to Joshie describe his pain in terms of how many people are hammering nails into his head (1 or 2 people = not too bad, whereas 10 people = severe).? He wants no one to talk above a whisper, which is challenging in a house with many other children. I'll be calling Dr. G in the morning to get different orders because we really need things to be better than how they currently are.Today was an unusual day, with Joshua being exceptionally clingy.? He woke up wanting to cuggle and I was not allowed to move away from him except to use the bathroom.? He had to be touching me at all times and his preferred position was resting between my legs, with his back against my stomach & his head on my chest, with my arms wrapped around him and him holding my hands up under his chin so he could kiss them repeatedly.? I didn't mind the cuddly boy.? I quite enjoyed just holding him for the bulk of the day.? In the early evening (about 7pm), he asked me to take him for a walk.? Just him & me, so we could have some "Joshie & mommy time".? I laughed & asked, "What has all day been?"? He insisted on going out, though, so Charley generously offered to feed the other kids & keep them amused while I indulged Joshua's desire to go out with only me.? I pushed him in his wheelchair around our neighborhood and he would point out leaves on the ground that he wanted me to pick up & give him for his "collection".? At one point, I asked Joshie why he was being so cuddly today.? He told me that he was really, really hoping God would take him to heaven tonight, so he thought cuggling with me would be a nice way to spend his last day here... and didn't I agree?? I assured him that yes, I agreed it was a very nice way to spend the day. He nodded and said, "I hope God will let me come soon, Mommy.? I am going to have so much fun playing with Chrissie and all the other kids at the playground."? I told him that I was sure he would have a great time.Joshua speaks of heaven on a daily basis as a routine part of conversation. He seems to be trying to figure out what he needs to say or do to convince God that it's time for the angels to come pick him up.? He will say things like, "Can we wake up everyone to pray that God will take me to heaven tonight?" or? "Maybe if I tell God, 'God, I really really REALLY want to go to heaven,' He will say, 'Okay, Joshie,' and then He'll tell the angels to come get me."? Joshua is certain that his Beppy (Bethany) will be there to play with him, too, and he tells us how much fun they are going to have swinging and looking for buried treasure together at the playground.? He is also looking forward to being able to understand what his sister says.? He seems quite pleased that he will be first person in our family who gets to have a conversation with Bethany.? We all tell him how jealous we are that he'll get to do that before the rest of us. We are getting good at talking nonchalantly and/or cheerfully about all of these things that feel like a knife being twisted in our chest. I think that means this has been going on for a really long time... or we're desensitized... or something.? It's not that we don't care.? We do.? Tremendously.I don't really know what else to say. Things with Joshua are hard. My other kids are sweet & wonderful & pretty much rock stars as they adapt to the limitations of our life during this season and I am so proud of them.? They love their baby brother fiercely & they all do everything they can to make every day as good for him as possible.? They talk openly with me during their sad times and, overall, are handling the stress of having a slowly-dying brother as well as possible.? But yeah, it's brutal.? Despite that, we DO smile every day.? We DO laugh.? We DO find ways to enjoy ourselves as much as possible. We focus on the positive for the most part, but we refuse to pretend this isn't a lousy situation that hurts us all because the blunt truth is that watching Joshua worsen as time goes on DOES hurt.? It is, quite frankly, an awful experience, and I want my children to know that they can express their anger, fear, frustration, exhaustion (and any other emotion) to me or their dad and it's okay for them to do that.? They know they can be frustrated with Joshua, vent that emotion to Dad or Mom (and get hugged & loved on & assured they aren't bad for feeling that way), and then they are able to let go of that negative feeling and go back to enjoying their brother, which is what I like to see. Every night, as I watch my kids say goodnight to their brother, I think that if tonight is the night Joshua is going to die, I want my kids' last memory of their interaction with him to be a happy one.? Allowing them to be honest with me about what they're feeling ~ even when it's not "nice" ~ seems to help them tolerate the challenges their brother presents each day and keeps them wanting to interact with him, no matter what.? I thank God for protecting the tender hearts of my children and for giving each of them a love for Joshua that refuses to be stopped.I am all right. I am mindful of the approaching train and make a concerted effort each day to enjoy & appreciate the good moments as they come. I have support from friends when I need it & if I fall apart, I don't have to cry alone.? God gives me the strength to face what each day holds & when I need Him, He is always there.? When I get angry with Him, I tell Him and He listens without condemnation.? When I don't understand why He is allowing the things that are happening & my heart is hurting to the point I find it hard to breathe, I feel His presence.? When I tell him I know I should talk to Him, but I really want someone with skin on to comfort me, He prompts a friend to ask me how I'm doing.? In other words, God is meeting my needs and helping me each step of the way.? I can't imagine having to walk this road without knowing Jesus.? I'm thankful that I don't have to.? The pain of what my family is going through isn't lessened, but He strengthens us in ways we could not do for ourselves and that is what makes the difference.? 109 people this Sign My Guestbook | Read Tributes Written July 10, 2013 1:34am by Kate Parker We're not home from Portland yet, but the quick update from yesterday's meeting is that we didn't get great news about Joshua. The palliative care doctor said we can expect Joshua's agitation/mental problems to worsen as time goes on. She witnessed the struggle that we are having with Joshua and saw an acute pain attack, as well. New recommendations for pain meds have been made and she said we are now at the point where we need to medicate knowing that Joshua will sleep more and that's okay.? I didn't disagree with her assessments or recommendations, but that didn't make them any easier to hear.He has needed a LOT of fentanyl today ~ 15 breakthrough doses ~ and he is not feeling well.? I suspected this trip would take a lot out of him and it has, but it was worth it to have Dr. G finally meet Joshua and I believe it will help her with managing his care as time goes on.90 people this Sign My Guestbook | Read Tributes Written July 4, 2013 3:14am by Kate ParkerThings with Joshua are tough.? I have had a hard time trying to update lately because I don't know how to put things into words in a way that people who have never walked this road will understand & not be appalled by.? Joshua's personality continues to change.? Not in good ways.? He has lost all ability to wait, to reason or be reasoned with, and to do things any way other than how he wants.? When he is sweet, he is very, very, over-the-top sweet (not complaining about that!) and when he is sour, well... he is very unpleasant & often difficult to handle. He can sense when he's hungry but can't tell when he's full.? It takes very little food for him to start complaining that his belly hurts and then he will crouch over a bath towel & hit himself in the back to try & make himself throw up. As a result, we are having to control when we let Joshua eat.? It is hard when he is asking for food and I have to tell him he has to wait for just a few more minutes because I don't want his tummy to hurt if he eats. That goes over like a pregnant pole vaulter. He insists his belly is fine and repeats himself incessantly until he gets what he wants.? In our house, the rule for our kids has always been, "If you nag, the answer is 'no'."? Suffice to say that rule is meaningless to Joshua & no longer applies.? I have been assured by his nurses & doctors that he is not simply choosing to be a belligerent, whiny, demanding, unreasonable little boy.? This is all part of his medical condition as it progresses and it bites. Hard. Lorazepam takes the edge off Joshua's agitation, but is no longer eliminating it (yeah, I know, that didn't last long).? Increasing the dose during the day makes him very sleepy.? Increasing the dose at bedtime prevents him from falling asleep for hours.? Why?? Not a clue.? It is something I will be asking his palliative care doctor about on Monday when I sit down with her to discuss all things Joshua.My little kids' hearts are being broken as they watch their brother worsen.? Each time he yells at them to "leave me alone!" I see another piece break off.? The hurt they feel is visible in their eyes.? They do SO WELL at not snapping back at their brother.? When Joshie lashes out at them, they quietly back away and say, "Okay, Joshua."? They are doing their best to understand what is happening inside their baby brother's head, but it's a lot to ask of a 9 year old,? two 11 year olds & a 14 year old. Heck, it's not easy for the adult-aged kids, either!? My fear is that their memories will be filled with how Joshua is now, which is NOT the Joshua we have known and loved for 7 years.? I don't know how much the younger kids are going to remember of their brother ten years from now, anyway... it hurts my heart to think they won't remember anything but how he was at the end & to not be able to do anything about it.? Last night, David asked me very seriously, "Can't you use some mommy magic or something to fix him?"? After a deep breath to hold back the tears that threatened, I softly answered, "David, if I could do that, I would have fixed him a long time ago."? There really aren't words to explain how hard this is for my children. People think about the parents of a dying child, but the truth is that the siblings struggle and suffer, too.? It is a special kind of agony to watch the effect Joshua's decline is having on his brothers and sisters.? Mothers hate seeing their children hurt.? Mine are hurting every day and there is nothing I can do about it. The goal for Joshua ever since the day we learned his life would be cut short has been to maximize the good days for as long as we could and we have reached the point where Joshie just doesn't have good DAYS anymore. He has good moments.? Sometimes he has a couple good hours at a stretch.? But by & large, he struggles and as the days go on, he is having more bad times than good. He used to have bad moments in good days.? Now the opposite is true. I can admit that life sucks for Joshua now. I can even pray that God would please take him to heaven so he can stop hurting because I know that is what my little boy wants. The truth is that every member of my family, as well as Joshua, is weary. Living this way, as we've been doing for so long, is mentally & emotionally exhausting.? We are worn out.? At the same time, we do not want to live without Joshua.? The incredibly hard truth is that we can't get out of this nightmare version of Groundhog Day with Joshua by our side.? It is tremendously confusing to want Joshua's misery to end while simultaneously wanting Joshua to never, ever, EVER leave.? I want for him to be granted his heart's desire to have the angels pick him up & take him to heaven; I just don't want to have to learn how to live the rest of my days without my youngest son in order for him to get what he wants. As long as he is here, I can hold him & kiss him & hear his voice (even when he's annoying, it's better than not hearing him at all).? How am I supposed to be at peace with giving that up?? Conversely, how can I selfishly want to keep him here when his quality of life is dwindling & he is so obviously tired of life?? It is an awful situation and only God can do anything to change it.? So we wait for Him to move, not at all eager for Joshua to die, yet ready to let him go because we love him so much that we can't bear the idea of forcing him to go on a moment longer than he must.If you pray for Joshua, please ask the Lord to grant him the desire of his heart & to give him peace so that he can be comfortable ~ not merely out of pain, but also not agitated ~ so that he can enjoy his days with us. If you pray for my family & me, please ask God to strengthen each of us so we can continue walking this road the way He wants us to. Please also ask Him to protect the hearts & minds of my children.Two nights ago, as I waited for Joshua to settle down enough to sleep, he told me there was an angel watching us.? I asked him where the angel was and he pointed to a splash of light on the wall. I told him I didn't see anything and he couldn't believe it.? I asked him if the angel was here to take him to heaven & he dejectedly answered, "Noooo.? Not this one.? He's just watching."? Then he laid down and started singsonging, "I want the angels to pick me up & bring me to heaven!"? Over & over, he repeated that line.? I grabbed my camera (I keep one on my nightstand) and began taping.? Of course, as soon as I did, he changed the lyric a bit, but it's okay.? We had a sweet conversation that was representative of what has become a nightly routine when my little man is lovey & cuddly. Here is the link to what I recorded: Joshua, 7/1/13My family & I will never be happy about being forced to live without Joshua, but we are as ready as we'll ever be to let him go when God says it's time.? Our hearts will shatter the moment Joshua breathes his last breath on earth; I have no illusions about that and I am absolutely dreading having to face it, but God knows I am also hoping that knowing our little man isn't suffering anymore will bring my family some kind of peace that is currently eluding us.? The best moment of his life, when he sees the face of Jesus, will be the absolute worst moment of mine since it will be the start of life without my Joshiebear? and I am very aware that the pain I feel every day now is nothing compared to the agony that will explode in me when he is gone.? I also know that as soon as he is gone, I am going to desperately want him back & I may even be mad at myself for thinking & feeling the things I have shared here. Despite that, I can't beg him to fight to stay here. He isn't living anymore. He is just marking time until he can leave; as such, we wish God would answer Joshua's prayer.? He is miserable with only small bursts of sunshine breaking up the sadness.? Seeing him like this is hard (understatement of the day) & it hurts deeply.113 people this Written June 28, 2013 1:41am by Kate Parker Bethany has to go to Portland to see her rheumatologist & cardiologist and Joshua gets to go along because his palliative care doctor wants to meet him. Yes, the doctor who has been doing such an amazing job calling all of the shots with regards to medications & treatments to help Joshua live to the best of his ability for the past 6 months has never met my child. She took over from Dr. T when he left Legacy Emanuel. I have met her and visited with her a half-dozen times when Dr. T introduced her to me while Bethany was in the hospital for her heart surgery & follow-up appointments last year, but Dr. G has never met Joshua. She really WANTS to, though, and preferably before a funeral, sooooooo, because I have to take Bethany up to Portland, I will take Joshua, too. Dr. G said that giving Lorazepam might help Joshua to travel better. I anticipate having to drive for a bit, then stop so he can lay flat for awhile before we drive some more. I am nervous about how he will do away from home for a few days and would be grateful for prayer that he handles it all right.? We will be traveling on July 7th.Today has been pretty good.? With the help of lorazepam, Joshua has been relaxed & happy for most of the day.? He is needing more breakthough fentanyl and says that if he bends his neck too much, it makes his head hurt, but aside from that, he has had a good day.? It was a joy to listen to the kids laughing with their brother again.? The medication doesn't make everything better, but it definitely helps to make things more "okay".? 92 people this Sign My Guestbook | Read Tributes Written June 26, 2013 9:17pm by Kate Parker Joshua's palliative care doc has started him on Lorazepam (Ativan) to take the edge off his irritability, which she believes is actually anxiety due to the changes he feels happening inside his body & his frustration at not having passed away yet (yeah, that one was hard to hear). I gave him a dose when I got home from the hospital with Bethany and wow, the difference is astounding. He is playing happily (!) on his iPad with Sarah & Isaac sitting beside him and he's totally fine with that (!) and he is interacting with them via conversation (!). HUGE difference from what has been. I am rejoicing at the return of my little boy. It's amazing what a little medication can do sometimes. Thank you, God, for Dr. G. 113 people this Sign My Guestbook | Read Tributes Written June 23, 2013 3:20am by Kate Parker I am royally disappointed that caringbridge changed their site and now I can't use the font style, size or colors that I prefer.? This one-size-fits-all approach is for the birds. Yeah, I know, it's a piddly thing that doesn't matter in the grand scheme of life, but I dislike this change.? It's one more thing that is out of my control. I was happy with the way things were and now it's ugly and I can't do anything about it. Maybe that sounds insane, but it's how I feel. Joshua's personality is changing.? He is becoming increasingly bratty and argumentative and combative.? His primary emotions are now negative, which makes everyone extremely sad.? We all recognize that this is NOT the Joshua we know, but no one has any idea what to do about it.? My almost-12 year old son came to me in tears the other day, telling me he had been praying and had asked God to please take Joshua to heaven and put him out of his misery so that our family can be out of our misery, too.? I gently reminded him that when Joshua dies, we are going to be sad, so we won't exactly be out of our misery ~ it'll just be a different kind of misery.? David answered, "Yes, but we will know that Joshua isn't hurting anymore and that he can be himself in heaven instead of the way he is now while he's here.? That would be better, right?"? *sigh*? I don't have words to describe the special kind of pain that comes from watching my son become less "Joshua" and more "some kid I don't know".? Through everything he has endured ~ all of his surgeries and procedures and needle sticks and hospitalizations and loss of skills ~ he has not been a brat.? He was not mean-spirited.? As such, the little boy we are living with now is troubling & it makes me tremendously sad to see what my child is turning into as a result of the changes going on inside his head. The home health & home infusion nurses and pediatrician assure me that the unpleasant behaviors & attitudes being displayed by Joshua are not intentional.? Apparently, it's not uncommon for people with brain tumors to have major personality changes as they approach the end of their lives and that is what Joshua's situation is being compared to at this point since there are some similarities.? Know what?? It SUCKS!? Like it isn't hard enough losing someone we love inch by inch?? Now we have to add negative personality changes to the mix?? It's cruel and it is breaking the hearts of my family members to pieces.? I don't want our time with Joshua to be marred by him being... not himself.? He has very few chunks of time each day where he is the child we've known & loved for 7 years.? I am worried that my younger kids are going to remember their brother as a demanding, bratty jerk instead of the gentle, happy, loving brother they had fun with.? Adam spent some time with Joshua tonight and was shocked by how much he has changed in the past week, telling me, "He is not the Joshua I know, Mom.? When he dies, I don't want to remember him like this.? I want to remember the way he used to be."? Adam's words made me cry.? I can't stand this. I miss my sweet little boy.? I hate what is happening to him now.? Megan told me she doesn't see God's purpose in having us go through this.? I told her I agreed with her; I don't understand this at all.? Why does a 7 year old become someone unrecognizable to his family?? Why does his family have to endure sadness upon sadness before the ultimate blow of death hits?? I have no answers tonight; just an abundance of tears. 96 people this Written June 18, 2013 12:07pm by Kate Parker Wow, four days have gone by since I've said anything.? I don't know why, exactly. I guess maybe I'm not sure what to say.? Nothing has changed.? Joshua is mostly content when he is awake.? He needs his environment to be low-key & thankfully, his siblings are understanding of that need & are conscientious about speaking quietly and keeping pretty calm around their brother.? Head pain is adequately controlled with his hourly dose of IV fentanyl plus a few breakthrough doses each day.? Joshie lays down when his head is bothering him, which helps to avoid the need for a lot of extra doses of medication.? Two days ago, he asked me to turn down his tube feed because the rate he was getting was making his belly hurt.? I have tried to not focus on how 1.5 ounces per hour of fluid is "too much" for his gut to be comfortable with.? I backed him down to 1 ounce per hour and he's tolerating that without problem.Overall, the picture with Joshua remains one of very slow, inexorable decline.? We love on him as he is able to tolerate it & do our best to make him giggle every day.? Other than that, there is not much we can do outside of catering to his every whim & trying to make sure his environment is kept as ideal as possible so his head hurts as little as possible.? It's not much, but it's all we're left with.? I am thankful we have what we do.On a happier subject, Adam & Faith shared with us on Father's Day that they are expecting a baby (due at the end of February). Adam knelt beside his little brother's bedside & quietly shared the news, to which Joshie exclaimed happily, "Oh yayyyyyy!"? He later told us that he thinks Adam & Faith are going to have a cute cute cute baby girl and we will need to buy cute baby girl clothes that are as cute as him. Yes, we all laughed & agreed that we'd have to do that. I was so happy to hear the news and learn that I am going to be a Grandma & I was so happy for Faith & Adam, but what made me smile the most was realizing the special gift Adam was given by being able to tell his best friend, his little brother, this incredibly special news face-to-face. I am so thankful that God allowed Joshua to be here to share in his brother's joy.? Joshua doesn't understand the concept of being an uncle, but he knows what babies are & hearing his happy squeal and Adam's subsequent laugh emanating from the bedroom told me what a special moment it was for both of them.? I'm thankful Adam will always have the memory of telling Joshua about Faith & his first child.? It will be a treasured one, for sure.92 people this Sign My Guestbook | Read Tributes Written June 15, 2013 12:02am by Kate Parker Joshua with the legos sent to him by sweet Molly & her older sister & mom.? :)? The pictures I took of him playing with the assembled set the next day were all flashed out due to too much sunlight behind him.? I will have to take some more.? But this picture shows his excitement at realizing it was THE set he had been coveting for months.? Super fun to be able to give it to him!!!Since increasing his fentanyl dosages this week, Joshua has needed just 1-2 breakthrough doses per day.? He is sleeping about an hour longer each night/day, but he's comfortable and happy when he's awake and that is worth losing one hour per day with him.? Overall, he is more quiet now, which I think is a side effect of the medication, but again, it's worth what we are gaining from having upped his doses.His weight is down 1.5 pounds this week (he gets weighed every Friday after being deaccessed & prior to his bath).? I'm actually pleased with that because it appears to be fluid that he has managed to shed.? The protein powder he's getting every day seems to be helping a little bit in the fight against fluid redistribution in his body.? He's still puffier than he's been ~ for the first time in his life, really, he looks chubby ~ but he is peeing a lot more volume than he was a week ago and he says it doesn't hurt him to pee anymore, which is a huge thing and makes me believe the protein is helping somewhat (reminder: protein deficiency causes fluid retention as fluid gets pushed out of blood vessels and the gut into surrounding tissue).Tonight, I took Emily, David, Sarah, Isaac, Joshua & Bethany for a walk.? Emily roller bladed, the other kids walked & I pushed Joshua in his wheelchair while carrying Bethany on my back in an Ergo.? We went to a nearby park because it is the only one in town that has a handicap-accessible swing and Joshua loves to swing when he is feeling good.? When we got to the park, I was sad to find the handicap swing had been removed.? I don't know what happened to it.? I decided we'd come that far and I wasn't going to give up just because the swing that would enable Joshua to swing on his own was gone.? I unhooked him from his feeding pump and carried him with his fentanyl bag to a regular swing and with Emily's help, I got Joshua situated sideways on my lap with his right arm around my neck and his left hand holding the chain of the swing (on my right side).? I wrapped my arms around the chains and held onto Joshua and then Emily pushed us very gently so that Joshua could swing.? Let me tell ya, it is a challenge to balance 70 pounds of child & a fentanyl bag on your lap while swinging!? LOL? We managed, though, and it was totally worth the effort involved to hear him laughing.? Emily took a short video if you want to see my happy boy.? After about 5 minutes of swinging, Joshua was done & ready to go home.? I loaded him back into his wheelchair, got him hooked up once again to his feeding pump, arranged his tubing so it wouldn't get snagged in the wheels and then reloaded Bethany onto my back and then the kids & I headed home.? It was a fun little outing and even though Joshua needed 2 breakthrough doses of fentanyl while we were out, the fact that he was able to tolerate going out for even a short time made all of us ecstatic. 105 people this Sign My Guestbook | Read Tributes Written June 12, 2013 12:31am by Kate Parker Joshua has only needed 1 breakthrough dose tonight, which is phenomenal improvement from the past 4 days. His head is not hurting at all. He is very quiet, not hungry & being a bit snappy if someone asks if he wants something to eat, but he is sipping some grape juice & contentedly watching SpongeBob. This may be as good as it gets (time will tell), but my family & I are thankful because it's so much more enjoyable to sit beside Joshie & watch a movie than sitting beside him, watching him struggle when pain was getting the best of him every night. I owe Dr. S another hug when I see her ~ I am SO grateful for her willingness to increase the basal rate of fentanyl just 24 hours after increasing the breakthrough dosage amount!Thank you for the prayers and encouragement and understanding.? In addition to prayers for Joshua's physical, mental & emotional comfort, please add in prayer that we will be able to avoid constipation.? I know that probably sounds like a funny prayer request, but it's very genuine.? Opioids (narcotics) slow down the intestinal tract.? Combine that with the issues Joshua already has with his GI tract (slow motility & nerve damage to his bowel that makes it difficult for him to poop) and you can understand the potential problem we could encounter.? I am not asking for suggestions or remedies for constipation ~ what we are doing for Joshua works just fine.? With each increase of fentanyl, however, the slowing of his gut increases & with it comes the increased possibility of difficulty 'going'.? The increase also affects the bladder and makes urinary retention more likely, so please pray for Joshua to not have bladder or bowel problems.? It would be lovely if God would allow those two processes to continue the way they're supposed to all the way up to the end of Joshua's life.? I realize it is not highly likely for me to get that wish/prayer granted, but God says to make our requests known to Him, so I figure, why not ask?? :)I'll end this entry on a sweet note...? Joshie just hugged my neck & said, "Thank you."? I asked, "For what?"? He smiled big & answered, "You know!"? I burped (hey, I just drank some Coke!), which made Joshie giggle, and I asked, "Thank you for burping?"? He giggled again and rebuked me, saying "NO!? That reeks!"? That made me laugh out loud, which made Joshua burst out with a full-blown laugh, too.? Once we stopped, I asked, "No, really.? Thank you for what, Sweetie?"? He looked me in the eye and said very simply, "For making my head feel better."? Then he leaned forward & kissed me before turning his attention back to his movie.And that, my friends, is what I live for nowadays.? Moments that take my breath away because they are so fleeting & therefore so infinitely special.? Thank you, God, for the glittery sound of Joshua's laughter tonight.? Thank you for quiet giggles.? Thank you for warm arms squeezing my neck & little-boy kisses.? Thank you for hours with no pain.? Thank you for time spent cuddling a relaxed and content child.? Thank you for providing a way for me to connect with people all over the world through the power of the internet & writing.? Thank you for a palliative care doctor (& her nurse) and a pediatrician (& her nurse) and a home health nurse & a home infusion nurse & a pharmacist who are all working together to give Joshua the best possible life even as he slips closer toward death.... and thank you that they are determined to give Joshua the best possible death, as well.? Thank you, God, for the good in each day.? And thank you, especially, for the gift of tonight.? It has revived me as a drink of water would a thirsty woman in a desert and now I feel able to continue on.? Your timing is perfect, Lord.? Even though I still don't understand the "why" of this & I really don't like where You are having me walk, I thank You for making it so abundantly clear that I am not walking alone.? Written June 11, 2013 7:20pm by Kate Parker Super-fast update before I go make dinner & go to the store to buy more pedialyte...We increased Joshua's basal dose this afternoon when the nurse was here.? It will take awhile to see how it affects him, but I am hoping it helps.He is not eating or drinking much at all.? So far today, he has had one sip of juice and two nibbles of a cocoa puffs cereal bar.? He's still tolerating pedialyte at 1.5 ounces per hour & he gets protein powder dissolved in water, which adds 8 ounces of fluid and 130 calories to his daily total.? I'm thankful that his body is "okay" with it.The nurse and I talked a little about how things are progressing.? The home health team thinks Joshua is going to slowly move toward the point where he is sleeping pretty much all the time, waking only to request pain medication.? She explained to me that that is the natural progression for a person dying with increasing pain.? That makes sense, but once again, understanding something in my head doesn't make it hurt less in my heart.? 85 people this Sign My Guestbook | Read Tributes Written June 11, 2013 12:50am by Kate Parker This was Joshua at 7 pm, waiting for something to help him feel better (I took the picture to show Dr. S how he looked since she's currently out of town but was trying to help me help Joshua). He'd had 3 bolus doses of fentanyl in the previous hour and he was STILL hurting. I seriously cannot comprehend pain of that magnitude. I don't ever WANT to feel that kind of pain and it causes tremendous grief to see my son endure it on a daily basis. It also makes me kind of pushy about getting him what he needs to get OUT of pain.Dr. S increased Joshua's fentanyl breakthrough dosage today and it did nothing. My son has had the exact same kind of day today that he's had for the past 4 days: a few hours of "good" after waking followed by many hours of horrid head pain forcing him to lay on the ground, sweaty & miserable, as I give him breakthrough doses to try and help him feel better again. Eventually, the medication gets the pain controlled again and then Joshua is able to sit in the darkened family room & play a game on the computer for a bit or lay on the ground & watch a movie before going to bed for the night.? I am desperately trying to get him a more comfortable existence than this.He hasn't been interested in eating or drinking much today (I think it's because of head pain versus it being the 'end of life not wanting to eat/drink' phenomenon we'll eventually see happen). I've gotten a cereal bar into him & a cup of grape juice and that's it. He is getting 1.5 ounce per hour of pedialyte, too. I bought whey powder so he can get 32 grams of protein per day, which I am hoping will offset the protein deficiency symptoms we have been seeing (most obvious being the fluid retention). Today was the third day he's gotten that.? He still receives daily vitamins that are crushed & put through his g-tube, too.? I am not going to be ready when the day comes where Joshua refuses food & liquid.? I've had a panicky feeling today as I realized he was not eating or drinking.? I knew I couldn't force him to and I didn't try, but inside, I was shaky.? Parents want their children to eat.? It's programmed into us and accepting that there will come a point when Joshua isn't going to do it is going to be hard.? I realized that today.It has been a lousy day.? It's been one of those days where you want to run away from everyone and everything because it's all just so damn HARD and PAINFUL at every turn.? I am worn.? I am broken.? I am so SAD and that adjective isn't even right, but I am too tired to try to think of a more fitting one.? I hate this. Watching my little boy as his condition worsens is brutal and knowing there is nothing I can do except scramble to try and find things that might alleviate a symptom here or a complaint there is so inadequate and leaves me feeling like I am failing him.? My heart aches for the suffering this beautiful child endures and all I want is to make it go away... to enable him to smile & enjoy his life.? Days like today, when I can't make that happen, tear me apart.91 people this Sign My Guestbook | Read Tributes Written June 9, 2013 11:54pm by Kate Parker I know I said yesterday that I would update about medical stuff today, but it's been another tough day for Joshua and I have not had time to sit and write anything coherent.? In a nutshell, he's needing a bunch of breakthrough doses of fentanyl.? He lays down a lot because sitting up eventually makes his head hurt (sometimes very quickly and sometimes after an hour or two).? When a headache hits, it's extremely difficult to bring his pain back under control.? His pediatrician is out of town, but has been emailing with me & will be calling in new orders tomorrow for increasing the fentanyl Joshua can get.His g-tube pump has been alarming very frequently (6+ times per hour) since the middle of last night.? After troubleshooting everything under the sun & replacing every element of the system (including the pump, itself, since we have 3 in our house) and still having alarms going off, I am certain his mic-key button is not positioned perfectly (I changed it to a longer one just a few days ago).? I repositioned it a couple hours ago and the alarm has not gone off since.? I am cautiously optimistic that the problem has been solved.? I sure hope it is because to not have the pump working means Joshua doesn't get fluids, and if Joshua doesn't get g-tube fluids, he won't live more than a few days since he drinks less than 18 ounces by mouth in a 24 hour time period.? Things are not that dire, but I'm explaining why having the pump misbehaving for hours & hours was stressful and not a "little thing".? Hopefully, though, everything will be fine now.? I will share pictures of Joshua playing with his legos soon.? He wasn't feeling well enough to enjoy them for very long today, but I am hopeful that after we increase his fentanyl tomorrow, he will once again be able to have longer stretches of sitting up and playing.91 people this Written June 9, 2013 12:05am by Kate Parker Thank you to EVERYONE who "liked" my blog submission on Facebook & shared the link with their friends and asked them to "like" it, too. The contest is over & my submission won!!! Woo hoo!!! At the beginning of the week, I honestly did not believe I had any chance of winning, so I was shocked & amazed by the 1,328 votes that my blog post received. THANK YOU for helping to make this win possible!!!!!I have to send a letter confirming Joshua's diagnosis, signed by Dr. S, to the Dare To Hope Foundation, and after they receive it, they will confirm the win & then send the gift card.? However, thanks to an incredibly generous family across the country whose 7 year old daughter has chiari & lives with chronic pain & wanted to use some of her 1st Communion money to buy Joshua a present (and thanks to a special friend of mine who provided this generous family with inside information about what it was Joshua wanted after she saw the request made in a guestbook comment), the Monster Fighters Lego set that I had planned to purchase with the Amazon e-card if my submission won has been gifted to my little boy and was delivered to the house by Adam tonight after he got off work. I will admit that I was very nervous at first when I read the guestbook comments talking about donating money to purchase legos for Joshua because my only intention when I asked people to please "like" my blog submission for the contest was just that ~ I was not trying to manipulate anyone into offering to send money for Legos or to buy a set for Joshua. I am acutely aware that some people use their blogs to get gifts sent to their sick child and I NEVER want to be accused of being such a person because that is not why I write here on caringbridge.? That is why I try to be very careful about how I blog.? I had shared what I wanted to get with the Amazon gift card if I won the contest only because I had hoped it would make people want to help me win if they understood that the prize would benefit Joshua.? My friend, Sarah, told me to not worry and to understand that there are people who truly want to do something because they care about Joshua & sending Legos was one way they could show that, and if I had not won & people had wanted to contribute to buy the set for Joshua, I could have accepted their offer and anyone who knows me (from reading here for awhile) would know my heart's intention.? As such, her advice to me was to say, "Thank you," and to also thank God for the "hugs" that He sends me through unexpected blessings.? Soooooo...... THANK YOU for offering!? Despite my insecurity about people getting the wrong idea about me if I accept gifts, I DO sincerely appreciate that people would have banded together to make sure Joshua got that Lego set he's been wanting if I hadn't won the contest. I am truly grateful to a sweet little girl named Molly who wanted to give Joshie a present because she understands what it is like to live with a headache every day (please pray for her to be given relief.... my heart is sad for any child who endures chronic pain) & to her older sister & mother who sent not only the Monster Fighters Lego set, but the game "Boggle" for my other kids to enjoy.? As for what the $100 Amazon gift card will be used for now?? Movies.? Lots of movies to entertain a very special little boy who is cared about by so many. Thank you for helping me win the contest and thank you for wanting to bless Joshua if I didn't win, too. My heart is full as I glance up from my laptop and see Joshua smile & listen to his happy chatter as he watches his big sister assemble?the enormous, 900+ piece Lego set so he can play with it.? Despite Joshua's need for many doses of fentanyl today (I'll update about medical stuff tomorrow), it has been a day of blessings.? Thanks again to everyone for voting and showing your support in such a tangible way.? 122 people this Sign My Guestbook | Read Tributes Written June 7, 2013 10:23pm by Kate Parker Today has been a tough day for Joshua, but for a different reason than yesterday.I had to get him up when the nurse came for the weekly port de-access/bath/re-access, so that was strike #1.? Waking Joshua before he's ready almost always ensures more head pain than would otherwise occur.After he was de-accessed and had his bath and a cuddle with Mom (my *favorite* time of the week!), the nurse tried to access his port and could not get blood to come out, nor could she flush fluid into the vein.? After some attempts to adjust the needle (painful for Joshua), she reluctantly had to admit defeat & withdraw the needle from Joshie's chest.? Strike #2.Another attempt was made and the result was the same.? Strike #3.? The nurse gave up and called her boss, requesting that he send an infusion nurse over to try to get Joshua accessed so that we could get him hooked up to his pain medication again.The nurse had to drive 40 minutes to get to our home.? Thankfully, she was able to get Joshua's port accessed & working properly on the first attempt and the moment the nurse had his fentanyl running again, Joshua asked for "lots of meddies" to help his head feel better.? He'd gone 2 hours without anything, so we have had to do some catching up to get him comfortable again.I spoke with our palliative care doctor & her nurse this afternoon while the home health nurse & I were waiting for the infusion nurse to show up.? I asked Dr. G what her recommendation would be if the next few days are like yesterday & got parameters for increasing the bolus dose amounts first, then increasing the basal rate if the increase in bolus amount isn't adequate.? She said we'll adjust the bolus dose next because our goal is to keep Joshua's respiration rate at 7-8 breaths per minute and the concern is that increasing his basal rate would suppress his breathing more significantly than that.? She said that while it's evident Joshua is winding down, the goal of keeping him happy & enabling him to do what he is capable of doing for as long as possible remains.Dr. G also answered my question of why Joshua is getting puffier over time.? For the first time since he was 17 months old and first got his g-tube, we have to put in a longer tube because he is experiencing skin breakdown around the mic-key button due to his belly being swollen and putting too much pressure against the g-tube.? Dr. G explained that when a person doesn't get enough protein, their body diverts fluid into tissue.? Joshua currently takes in almost no protein, so the third-spacing now makes sense to me.? I'm going to try to increase the amount of protein he gets to see if that will help.? At this point, the extra fluid isn't making Joshua uncomfortable, but the extra weight makes him harder to carry and I really don't want him to get to where his skin is stretching from fluid retention and causing him pain.? I don't know if it's avoidable, but I'm going to do what I can and maybe luck will be on our side with this one issue.? ? 89 people this Sign My Guestbook | Read Tributes Written June 6, 2013 8:56pm by Kate Parker I have been utterly blown away by your response to the blog contest.? Thank you so incredibly, tremendously much for "liking" my entry and sharing with your friends on Facebook!? The contest isn't over yet (it ends on Saturday at 10pm), but regardless of the outcome, I want everyone to know that I am so touched by the show of support.? Thank you!!!? I'd like to give a big, puffy heart hug to everyone!? You all sure do know how to make a mom feel loved.? :)Unfortunately, I have to move on to less happy news. As you may remember, we increased Joshua's fentanyl on Tuesday. He needed 1 breakthrough dose yesterday during Emily's birthday party when the kids got rowdy around him.? Thus far today, he's gotten 5 extra doses of pain medication. His head still hurts, but I am waiting for him to tell me when he wants more medicine. I can technically give him meds every 15 minutes, but I wait for Joshua to ask me to push the button on his pump because there is a very real risk of respiratory failure if he needs multiple breakthrough doses in rapid succession, so I want to be absolutely positive that he wants the extra medication before I give it... just in case that push ends up being the dose that stops him from breathing. I had an, "Is this REALLY happening?" moment this afternoon as I assessed the options: medicating my child to try and knock the pain out of his head, but knowing that giving enough fentanyl to make him pain-free could very well stop him from breathing OR watching him lay in a darkened, quiet room with sweat beading his face & soaking his hair because he was in pain.? Ultimately, after discussing the situation with Charley, I chose to walk a line between the two scenarios and gave Joshua bolus doses of fentanyl at longer intervals in-between doses while he laid in the darkened, quiet room.? The result was that he would sit up for 10-15 minutes before needing to lay down again for 30-45 minutes.? His respiration rate stayed between 8-10 breaths per minute, though, which was a lot better than the 5-6 that happened when I gave him 2 doses in 15 minutes' time.? If it gets to the point where Joshua requests "meddies" (that's how he says it) every 15 minutes, I will choke down my fear and push the button.? I don't want to let fear stop me from doing what is right for my little man.? That said, it's not easy, by any stretch of the imagination, to be in this place.Being upright eventually makes his head hurt a lot. He's still "dopey" from the increase we did on Tuesday (he typically would be adjusted to a new basal rate by now) and he's tired all the time. He is eating & drinking less. He's been having some belly pain when he does eat.? I am not feeling great about where he's at. I had hoped that increasing the fentanyl would get him back to a better baseline and I am so sad & disappointed that it didn't.? I'll call Dr. S (pediatrician) tomorrow and I anticipate that she'll call Dr. G (palliative care) for advice.? I don't know if Joshie will power through this and be okay again or not.? At this point tonight, I really don't know which way this is going to go.? I am not saying that I think he will die tonight or in the next few days.? I just mean that if his pain is getting out of control and we have to increase the basal rate again or if he continues needing lots of breakthrough fentanyl, we might see Joshua being very sedated as a result, in which case I would guess that the end is near.? But honestly, he may surprise me and wake up tomorrow feeling a lot better & not needing a bunch of breakthrough medication, which would lead me to conclude that whatever happened today was a fluke and not an indicator that we're on a final downward slide.? After all, Joshua has had other times where he's struggled and then turned it around, so it could happen this time, too.? I won't give up hoping for more happy times until I know there is no chance of it happening.? And while I am not wanting to prolong any suffering for my precious son, I absolutely refuse to do anything to hasten his death, either.? Written June 4, 2013 6:09pm by Kate Parker Joshua's basal rate of fentanyl ~ the amount he gets every hour regardless of breakthrough doses ~ was increased today.? When the nurse came over & was evaluating Joshie, she was surprised to find his respiration rate at 8 breaths per minute. The highest it got was 12. Whether the slowness of his breathing was due to the increased fentanyl or the fact that he had just woken up for the day (at 3:30pm) is yet to be determined.? It doesn't matter, though; we are not going to stop giving medication that is necessary to keep Joshua out of pain because our only alternative is to undermedicate him & watch him hurt and lose the ability to enjoy his life.? Not an option.? Our goal is to maximize his quality of life and proper pain management is the cornerstone of being able to achieve that goal. The potential side effect of that management ~ respiratory depression to the point of respiratory failure ~ is not lost on me.? The nurse and I discussed this and ultimately agreed that we have peace about the decisions being made. That said, the emotional aspect of knowing that increasing pain medication could result in Joshua's ceasing to breathe is challenging.? I can know we're doing the right thing but still feel nervous as I wait & watch to see how his body handles the increased dose.? That's where I am at this afternoon.? His voice is squeakier than it's been and he's tired even though he has only been awake for an hour, but he is currently watching SpongeBob with the little kids and his head isn't hurting and when I just asked how he's feeling, he answered, "Good." That makes me smile.? I can notice the changes and feel sad for what they represent, but when I see my little boy smile and listen to him interact with his brothers & sisters, the happiness outweighs the sad, so I focus on that.? This afternoon, I am thankful for fentanyl & awesome doctors who know how to get the scale balanced once again so that we can see smiles from the cutest 7 year old around.On a different note, I would like to mention again that I entered a contest hosted by Dare to Hope Foundation and the person whose blog submission has the most "likes" by 10pm Saturday evening will win a $100 Amazon gift card.? At this time, my blog post about Joshua is in the lead, but with 4 days left in the contest, it's way too early to assume anything.? I would very much like to win the gift card because there is a big "Monster Fighters" Lego set that Joshua has wanted for months, but I have not been able to justify spending almost $100 on one set.? If I win first prize in the contest, I will joyfully splurge on my little boy and surprise him with the Lego set.? I don't know who would be smiling bigger ~ him or me.? :)If you haven't clicked the link and "liked" my submission, would you please consider doing so now?? All you have to do is be logged into your Facebook account, click on the link and then click "LIKE" underneath the picture of Joshua.? If you want to, you could also share the link on your own Facebook wall & ask your friends to vote/like the submission, too.? If I don't win, it won't be the end of the world. Joshua has no idea I've entered the contest, so he will not be disappointed to not get new Legos.? But honestly, I'd love to be able to surprise him.? I don't have thousands of Facebook friends (actually, I have less than 80), so the only chance I have to win is if I can convince everyone who cares about Joshua to go to Facebook & "LIKE" my blog entry & then share with their friends and ask them to "like" my submission, too.? That is why I am bringing this contest up again here on CaringBridge.? I appreciate all of you who have already clicked the link to help me out ~ thank you SO much!? I'd be very grateful if more of you who read here would participate, too. ? LINK to contest81 people this Sign My Guestbook | Read Tributes Written June 2, 2013 10:14pm by Kate Parker Thank you *so* much to everyone who has voted for my blog submission & shared it on their own facebook walls.? I am touched ~ truly ~ by the show of support.? Joshua's appointment with the pediatrician went very well.? Dr. S greeted my little guy and told him, "Your mom said you wanted to come see me and I was happy because I love to see you, Joshie!? Can you tell me why you wanted to see me?"? Joshua answered, "Yes. My head has been hurting a lot and my leg hurts and I want you to make it better."? Our fantastic Dr. S then took the time to address each of Joshua's concerns and suggest things that can be done to make our boy feel more comfortable.We'll be increasing the basal dose of fentanyl that Joshua gets each hour, so that should help with his head pain.? An in-depth assessment convinced both Dr. S & me that the leg pain is coming from Joshua's tethered cord.? There's nothing we can do about that since surgery is not an option anymore, but we are hoping that increasing the fentanyl will take the edge off the leg pain.? If it doesn't, Dr. S will call Dr. G in Portland and ask her if Joshua's dose of gabapentin can safely be increased and we'll see if that helps.We discussed Joshua's new disinhibition (lack of a filter in speaking & his pushing people away at times & the grouchy/bratty behavior he sometimes exhibits) and how difficult it is for the other kids in the family to experience their brother acting so out-of-sorts and mean.? Dr. S gave me an analogy to tell the kids to help them understand a bit better what is happening inside Joshua's head.? It was a good visit with the doctor and I'm thankful that she made time to see Joshua today because it made him happy to be able to talk to her.? Sometimes, getting reassurance from his favorite doctor is what Joshie needs.? Dr. S completely understands that and is always happy to meet that need.? She is a tremendous blessing to my familyThis evening, Joshua's head was hurting badly despite 3 breakthrough doses of fentanyl, which led to him being very testy when anyone got near.? He told everyone to "leave me alone" and "go away," which is so *unlike* him that it shocked us all.? I took my teary-eyed little kids into a different room and we talked about how Joshua's brain is misfiring sometimes and how when that happens, he really isn't himself & he truly has no idea how he's behaving, nor does he have any control over what comes out of his mouth.? I sympathized, telling them I know it hurts their feelings when he says unkind things or pushes them away.? I told them that the way Dr. S had explained it to me, it's kind of like when they are sick or super-duper tired and a person is talking to them or getting in their face and they want to push the person away and tell them to be quiet... or when they have a headache and they don't like things to be too noisy... well, that's how Joshua is right now, but where they can control themselves even when they are tired or feel sick and they don't say mean things to other people even if they think those things, Joshua can't control himself anymore because that part of his brain isn't working right.? I explained that when he shoves them away or tells them he doesn't want to talk to them anymore, he doesn't actually mean it and I know it's really difficult to do, but when it happens, we all have to take a deep breath and tell ourselves, "This isn't the Joshua I know.? This is Joshua's brain misbehaving.? He doesn't know what he's saying and doing."? Then I told them that I know it's really sad that this is happening and I really wish it wasn't because it's really hard for me to hear Joshua say those mean things, too.The kids understood what I was saying and then they talked to me for awhile about how sad they are that Joshua's brain is broken (his 9 year old brother's description) and how it makes them feel like crying because he came home from the hospital (in April) a completely different kid who couldn't do much of anything anymore.? All I could do as I listened to them pour out their hearts was hug them, kiss their cheeks, stroke their hair (as tears leaked from my eyes, too) and agree with them that this is sad & tell them how sorry I am that I can't fix this for them & give them back their brother who could play & run around.? I didn't know what else to say to them. The layers of heartbreak for Charley & me are numerous at this point.? There's our own pain and then the pain we feel for each of our children and the pain of knowing there is not a blasted thing we can do to make this better or protect our kids from hurting so deeply.? It's an agony that defies description. Thankfully, Joshua went back to being more "himself" just before his siblings went to bed and while he wasn't up for hugging them, he cheerfully accepted their hugs and kisses and he told them he loved them.? As a result, all 3 went off to bed with smiles on their faces, which was something I silently expressed gratitude to God for.? I wish I could keep them smiling and am sad because it's not possible.? People say that no parent should have to lose their child (and I agree with that sentiment).? I would add that no child should have to watch their sibling die.? This is so hard for Megan, Adam, Emily, David, Sarah & Isaac (Bethany is not developmentally old enough to care).? It's breaking Faith's heart, too (Adam's wife).? If you think about it, would you say a prayer for all of them, especially the little ones who are having to grow up way too quickly with regards to learning about death? 121 people this Sign My Guestbook | Read Tributes Written June 2, 2013 8:36am by Kate Parker Dare To Hope Foundation is holding a blogging contest for families who have kids who are chronically ill and/or medically complex. A person can submit a blog entry that gives a glimpse into living life with their child. I entered the contest, submitting the majority of my journal entry from April 28th to try and win the top prize of a $100 Amazon gift card, which I would use to spoil Joshua.? :) Would you please go to this link and click "like" and then share this with your friends and ask them to vote for Joshua's blog submission, too? The contest runs through next Saturday. photo.php?fbid=591821740848925&set=a.591821724182260.1073741829.118866884811082&type=1&theaterThank you! (I will update again later today with information about how Joshua is doing after I take him to see the pediatrician.)61 people this Written June 1, 2013 8:39pm by Kate Parker Joshua has had a tough day today and he's been awake for only 3.5 hours so far (it's 6:40pm here on the west coast).? He was happily playing on the computer when he experienced a sudden, severe onset of head pain.? Emily jumped up to press his 'dose' button on the fentanyl pump while I helped Joshua lay down on the floor.? After a few minutes, he asked if I would take him upstairs so he could go to bed.? Once he was laying in bed, I closed the curtains and turned on his oxygen concentrator & the fan & hooked him up to his pulse ox (at his request). His O2 was at 82%, which explained the gray coloring around his mouth and nose and would definitely contribute to head pain. After a few minutes, his oxygen level began rising, but it took a bit of time to get back into the 90's (percentile). He asked for more pain medication and I pushed the button, but got locked out because it hadn't been 15 minutes yet.? I waited another 5 minutes, then was able to give Joshie the extra dose.? He rested in the cool, dark room for another half-hour with me laying by his side, but pain in his right leg prevented him from actually sleeping.? He has been having pain in that leg ~ specifically the knee region ~ for a few days, which I believe is due to his spinal cord being stuck in scar tissue and stretching the nerves. Fentanyl doesn't help it and Joshua already gets gabapentin for neuropathic pain in his legs. My little guy asked if I would take him to see Dr. S.? I asked what he wanted to tell her and he answered, "I want to tell her that my head is hurting a lot and my leg hurts a lot and when I stretch it, it hurts for a little bit but then feels a little better and can she do anything to help me."? Dr. S & I chatted yesterday and she offered to see Joshua on Sunday if he woke up today and wasn't feeling better, so when he said he wanted to go see Dr. S, I told him I would email her to get an appointment set up for tomorrow.? I'll take him in tomorrow afternoon & see if maybe we can increase his gabapentin or if Dr. S can offer one of her little "tricks" that, while technically a placebo, help Joshua to feel as though he's got some control over what is happening in his body. Yes, I know how awesome our pediatrician is and I will always have a special place in my heart for her because of all she has done & continues to do for my sweet boy.After another half-hour, Joshua was ready to come downstairs again, but he asked me to please make sure everyone was really quiet so his head wouldn't hurt and to please bring him down as fast as I could so that he wouldn't have to be upright for very long.? I complied and got him to the family room, where he is now laying on the floor with a pillow under his head, watching "Tangled" with his sisters & me.? His head is feeling better while he's laying down, but he has insisted that he can't sit up yet because if he does, his head will hurt again.? I assured him that no one was going to make him sit up if he didn't want to.? I have no real idea what happened to make his head suddenly hurt like this again, nor any idea if he's going to feel better in the next day or so and return to what his baseline has been.? This is a day-by-day thing.? I'm glad that with enough fentanyl, the pain can be knocked down to "easy," though.? As a total aside, did I ever tell you that Joshua's descriptions of pain as "easy," "medium," and "hard" came from the levels on video games that a player can choose?? I thought that was cute and no, I don't know what made me suddenly think of sharing that, but I wanted to make sure I've got it written down so I never forget.I'll update again tomorrow evening after we see Dr. S and let you know how Joshua is doing.? 87 people this Sign My Guestbook | Read Tributes Written May 31, 2013 11:54pm by Kate Parker I don't know if this is significant at all, but I want to write about it in case it turns out to be something I look back on and say, "Ah yes, that was a turning point."Joshua's personality has taken a dramatic turn from his norm. I don't mean his "new norm," either; I mean the norm of his entire life.? Over the past 48 hours, he has developed a bratty side. It isn't constant, but he's having definite periods of time where he is very unlike "himself".? During those times, he is easily annoyed, acts highly frustrated and gets very demanding in a negative way.? He acts like a brat, which is a huge shock because that just is not something he has ever really done.? Even when he'd be in the hospital & would be needy & grumpy, he wasn't a jerk about it.? It's hard to explain, but the change is noticeable to anyone who comes over.? I talked privately to the nurse today when she was here to do Joshua's dressing & port needle change and she said that personality changes can occur with brain dysfunction as well as being an end-of-life 'landmark'.? I told her how, last night, I asked Joshua what was wrong and he told Megan, Emily & me, "I don't know what God is waiting for," and then he prayed, "God, please let me go to heaven tonight."? He prays some variation of that almost every night, so that wasn't surprising, but he caught me off-guard when he asked me to "Pray for that, too."? I told him I would pray for him (didn't specify WHAT I would pray for) and he insisted, "No, pray now."? So I swallowed hard, closed my eyes and prayed, "God, if it is Your will, please let Joshua go to heaven tonight."? I told the nurse how Joshua wakes up in the morning and seems disappointed and then irritated that he is still here.? She agreed that he does seem frustrated and sympathized, saying, "Poor boy; he just wants to be done with all of this."On the flip side is this little boy who, when he's not grumpy & acting snotty, is hugging my neck & pulling me to him so he can kiss me & croon, "I love my mommy. She's the best mommy in the whole world." He cuddles with me and says, "I cuggo wis you 'cuz I wuv you sooooo mutz!" Then he grabs my arm or my hand and kisses it repeatedly with a loud, "Mwah!" each time.? So he goes from being incredibly bratty & demanding to being so incredibly sweet & loving.? Both ends of the spectrum are taken to the extreme and that is very different for Joshua.He has been super tired today, but any suggestions of a rest have been rebuffed, with Joshie telling us, "I can't go to bed."? When asked why not, he replies, "Something in my body won't let me.? I'm tired, but I can't go to bed."? We haven't pushed it, knowing he will sleep when he wants to.? The effort of being awake while he's tired has left him sweaty, red-faced and breathing hard, though.? It is a lot of work for him to function when he's tired and his body shows it.Thank you for your continued prayers & encouragement. Thank you for "hanging in there" with my family through this challenging time.? It is hard to explain how mentally tiring it is to experience "Groundhog Day" (living basically the same day) over & over & over and not know when it's going to end, but still not being in a rush to get to that end.? As Dr. S explained it, "We know what the end point is; we just don't know how long it is going to take to get there because this dear boy has already surpassed all expectations."? I am genuinely thankful for all of you who are here because you sincerely care about Joshua, and I am exceptionally thankful for everyone who makes a point of leaving supportive comments even if you feel like you don't know what to say.? It really does make a difference & it helps when I am feeling emotionally worn out.?108 people this Sign My Guestbook | Read Tributes Written May 29, 2013 11:39pm by Kate Parker Joshua is about the same as he's been for the past week, which is to say he's generally happy when awake, needs periodic breakthrough doses of fentanyl but can be kept comfortable with the extra medication, and is still drinking only grape juice & eating Fruity Pebble bars/the occasional egg & piece of toast/chocolate chip cookies.? Who knew a child could survive on such a lousy diet, eh?? LOL? He still watches movies (SpongeBob is still the leading favorite) and plays Minecraft on the computer.? And that is, essentially, all there is to say right now because honestly, that is pretty much every single day for him at this point in time.? Not a lot of variation.? We're just hanging out with him each day and enjoying the fact that he's still here for us to hug & kiss. He's lingering, but he's not miserable in this limbo, so that allows us all to go through each day without a lot of angst (usually), which is a gift.? It's emotionally exhausting, though, which doesn't leave me with much energy to update here, especially when there's not much to say because nothing significant has changed.? 104 people this Sign My Guestbook | Read Tributes Written May 26, 2013 12:21am by Kate Parker I was at Charley's work tonight and ran into one of his employees, who was there with her almost-7 year old son & 3 month old daughter. I held the baby and that was sweet, but what struck me was the conversation I had with the little boy. His speech was so clear. He did a connect-the-dots puzzle, colored a picture, compared two pictures & circled all the things that were different between them, and wrote his name, then showed everything to me. He had gotten a new toy & he handed it to me to inspect and then he told me all about where he'd gotten it & all the fun things he had done that day. He was just so darling... so... perfectly normal. I got choked up and thankfully, his mom (who knows Joshua well) understood even though I was surprised by my reaction to the time spent with her son. I truly did enjoy it, but I guess the contrast between her child & my sweet boy really hit me hard. Joshua should be doing all those things... he should be & I hate it that he isn't... that he can't... that he never will this side of heaven.? I hate that when he finally IS able to do all those things (after he dies, when he's made perfect in heaven), I won't be there to see it, and no, it doesn't make me feel any better to know that I will be able to see it someday since I have no idea when 'someday' is.I suspect some of my sadness tonight stems from the fact that my family can't go out together anymore and I really want us to still be able to. Charley or I can take some of the kids out to do something fun ~ such as a bike ride or a trip to the park ~ but we can't go out as a family because Joshua can't do it anymore and it is breaking something apart inside me every time I go out with the kids & leave him behind, ESPECIALLY when it's an activity that he typically would have been part of.? It feels so wrong.? It IS so wrong!? This is NOT how it is supposed to be and I hate hate HATE that I can't take my 7 year old out with his siblings to do anything anymore.? I hate that summer is coming & Joshua won't be able to go to the river or the beach or the park and I won't get to teach him how to fish and I won't get to laugh as he runs through the sprinkler or watch him ride his bike or roller blade and he won't eat bbq that his daddy makes or pick veggies from the garden or.... countless other things.? I especially hate that he might not even be here this summer for me to kiss as he watches a movie or plays Minecraft on the computer.I am so sad for my children, for the pain they have felt as they've watched their brother slide inexorably downhill.? I have held each of them as they cried & shared their broken hearts, fears & anger with me.? I have agreed with them that this is awful & unfair. When they ask why God is doing this, I have told them that God sees the whole picture and all we have is this one puzzle piece that we know fits into the picture somewhere, somehow, but from our perspective, this puzzle piece is ugly & misshapen because how could having their brother so sick & dying look any other way to us... but God has a plan and because He sees the entire picture, He knows that our puzzle piece is going to fit in such a way that when we stand beside Him in heaven and see what He sees, the beauty & perfection of the puzzle that He put together will amaze us.? I assure my children that knowing God has a plan and trusting that He's good through all of this pain does not mean we never cry or get angry or wish this wasn't happening.? I remind them that Jesus cried in the garden the night before he was killed.? He knew what was coming and He REALLY didn't want to have to do it.? He begged God to not make Him do it... to let there be a different way... and He cried.. and heck, Jesus knew that he'd be back with His Father in 3 days!? So it's okay that we are here doing the same thing.? God understands our pain.? He understands our anger.? He understands our feelings that this is unfair and He understands our fears.? He knows how much we will miss Joshua and He knows that it is hard for us to not know how long it will be before we see Joshua again.? He gets it.? And my kids tell me that while knowing all of that makes them feel a little better (comforted), it doesn't make them stop feeling sad inside.? I hug them tight and whisper that I understand because I feel exactly the same way.We all try to focus on what Joshua CAN still do, but each loss hits hard and realizing that he can't go on all of our usual spring & summer outings is a tough blow.? My kids miss their brother's presence and I can't believe that I'm expected to go out & smile & laugh & have a good time while one of my kids who SHOULD be with us is at home because he's physically unable to participate in outdoor activities anymore and he can't tolerate the light of the sun or the noise outside.? It gives me a taste of what is coming when Joshua is gone & I can tell you right now, it's horrible.95 people this Sign My Guestbook | Read Tributes Written May 24, 2013 8:32pm by Kate Parker Today was what Joshua calls "Poke Day".? Every Friday, the home infusion nurse comes over to de-access Joshua's port (remove the needle from his chest) and re-access it with a fresh needle. Before he is re-accessed, Joshie is carried to the bathroom, free from all tubes, and given a full immersion bath.? It's one of his favorite activities each week.? He loves the warm water and he laughs as his hair is washed & he gets all clean.? Afterward, he is wrapped in two fluffy towels and carried back to where the nurse is so we can get his port re-accessed & his fentanyl hooked up and going again.? Getting re-accessed is the "poke" Joshua named the day for.? He does not enjoy the needle change, but thanks to the compassion of the nurse allowing him to dictate how & when she accesses him (he asks her to count to 3 "cwo-wee" ~ slowly ~ and to wait until he closes his eyes and she complies), Joshua is handling "Poke Day" much better than he used to.? I am very proud of him.? As always, he makes the best of every situation, even the scary & painful ones.After he was re-accessed today, Joshua requested some fentanyl due to head pain.? It took a bit longer than usual to get him feeling comfortable again, but he eventually was feeling good enough to play a game on the computer.? What has struck me as different today is how sleepy he has been all afternoon & into early evening.? It's not related to his medication; I am certain of it.? This is different, but I can't exactly put my finger on what is going on.? He's just a bit off what is his "normal".? I suppose time will tell if this is significant or not.Interestingly, Joshua's weight is up 2 pounds this week (he's 72.6 lbs).? We weigh him every Friday and he's been losing, on average, 1 pound per week.? He hasn't suddenly begun eating and drinking a typical amount, but we have noticed that he felt heavier over the past few days and he's also looking puffy in his face & belly, so perhaps he is retaining fluid and that is why we saw the weight gain.? I don't know if this is a typical "end of life" thing or not, but I guess it doesn't really matter.? It's just something I'm making note of.He's been very sweet & lovey today. While the nurse was here, Joshie kept grabbing my hand & kissing it repeatedly, telling anyone who was listening, "I love my mommy so, so much!"? He would hug my neck and kiss my cheek & the tip of my nose and I would kiss & hug him in return, breathing deeply of his little-boy scent before speaking the words I tell him every chance I get:? "I love you, Dawa.? You're my best good boy."? He loves to be told that... Dr. S was the person who first used that phrase ~ best good boy ~ and I thought it was perfect for describing Joshua, so I adopted it as my own.? When I tell him he's my best good boy, if he's feeling well, Joshua will grin & say, "Yes, yes I am!"? If he's feeling poorly, he won't speak, but he'll nod his head in agreement.? It's one of those special "things" we have & I love it.103 people this Sign My Guestbook | Read Tributes Written May 23, 2013 2:58pm by Kate Parker Joshua is hanging in.? He's not "good" but he's also not "bad".? I guess I can just summarize by saying he's stable.? He's not in pain, he's tolerating 40ml/hr of fluid through his g-tube (that's 32 ounces per day) and he eats some food every day.? He watches movies and sometimes plays with legos.? It's not a lot, but he's content.Despite losing about a pound each week, his belly remains puffy and that has caused pressure on the skin surrounding his mic-key button (g-tube).? The skin won't heal, so Dr. S ordered a longer button and as soon as it gets delivered, I'll remove the mic-key currently in use and replace it with the longer one.? Hopefully, that will enable the pressure to be relieved and the skin can then heal.Each night, Joshua prays that God will make him stop breathing so he can go to heaven.? Each day when he wakes again, he has a moment of disappointment, then shrugs & says, "Only God can decide when I stop breathing," and then he goes on with his day.? He still talks every day about how he wants to go to heaven and how he "hopes it will be today."? I have to tell him I don't know when God will let him go to heaven and when he asks, "Do you hope it will be today (because that is what he is hoping for)," I have to answer as though it doesn't break my heart, "I hope you will get what you want, Joshie."I am weary of this emotional roller coaster.? I don't know what God is waiting for.? We thought Joshua was hanging on for the wedding ~ it sure seemed that was the case ~ and he was so incredibly adamant that he wanted to go to heaven days after the wedding.? I didn't think it was possible he'd still be sitting here watching SpongeBob as we head toward the end of May, especially after TPN was discontinued.? I'm not unhappy that Joshua is still alive ~ please do not misunderstand or misinterpret what I am saying!!!? The honest truth is that it is HARD to prepare yourself to lose someone you love and then have them keep hanging on long past the point anyone thought was possible.? You keep waiting and wondering and holding your breath and then something happens and you think, "Okay, this is it," and then the loved one bounces back and while you're relieved, you recognize that you will have to go through that "this is it" moment again and you start to feel like this child is "crying wolf" and maybe he isn't going to die after all because it hasn't happened yet and everyone (including you) thought it would have by now.? And THEN you beat yourself up for even thinking thoughts like that because what is wrong with you?? What kind of mother gets tired of waiting for her child to die?? Oh, you realize that isn't it ~ it's not like you ever WANT your child to die ~ but living in limbo, not able to do anything or plan anything because you have no idea when this completely-life-altering event is going to occur is insanely hard, especially when it's been going on for years, and you wonder if you're being selfish and then you hate yourself some more.? And, having shared all of this, I know that there will be some jerk who will throw this entry back in my face when the day comes that Joshua IS gone and I am missing him and wishing I could have one more day with him because that jerk will not be able to understand anything that I am describing and they won't even try; instead, they'll say, "Well, you couldn't wait for him to die, so maybe you should have enjoyed him while he was alive."? What that jerk won't understand is that this isn't about loving my child or being thankful for the time I have with him or being able to enjoy him while he is alive or being selfish.? It is about anticipatory grief and knowing something awful is heading my way and the exhaustion that comes with waiting for it to happen but not knowing when it will.? Imagine you are sitting in a dentist's chair and you're waiting to get your mouth numbed.? The dentist sits down, grabs the syringe and pulls your lip away from your teeth.? You close your eyes and wait for the sting of the needle, but it doesn't come.? You KNOW it's coming, though, so you don't open your eyes and you actually tense up even more because the awful anticipation is made worse by the fact that you are being made to wait for the pain rather than just getting it done & over with.? Finally, you peek open your eyes and are shocked to see the dentist sitting, holding the syringe in hand while he watches a scene of the movie that is playing on the wall (as a distraction for you, the patient).? He sees you looking at him and says, "Oh sorry, let's get to it!"? And you once again close your eyes and wait for the shot.? Now imagine that the shot doesn't come again, for whatever reason.? And just as you start relaxing and even thinking that maybe you won't need a shot after all, the dentist tells you to open so he can "numb up that tooth".? Imagine how stressed you would feel at the end of such an appointment.? That is kind of how I feel now.? I don't WANT Joshua to die, but I know it's coming and after 2 years of anticipating it (not in a happy, "Ooh, this is gonna be so great and I can't wait for it to happen!" way) and several times of believing, "Okay, this is it," I am emotionally worn out and wondering when this awful thing is going to happen. I am wondering how long it is going to take Joshua to deteriorate to the point where he actually stops breathing, but not because I'm looking forward to it happening. I am realizing that the doctors really don't have any idea of a timeline and that I can't rely on Joshua to give me a clue because he doesn't have any insider information like he thought he did (though I do believe everything he's said about what the angels told him ~ it's not like God or the angels told Joshua he would go to heaven right after the wedding; that was obviously Joshua's desire and not God's plan).? I do not want to live a life without my son.? I try to enjoy each day with him as though it will be the last one I get to have.? I also wonder what is going on and when God is going to take him Home.? Again, not because I'm looking forward to it, but because anticipating a painful event is exhausting, and even though I know it's going to be so incredibly horrible to live without Joshua, it's a different kind of horrible to live in limbo the way we've been for so long.Written May 21, 2013 3:49pm by Kate Parker The care conference yesterday began with Dr. S giving a synopsis of Joshua's life in order to bring the new members of the team "up to speed".? The goal was to give these new people an understanding of Joshua (in less than 2 hours) that took Dr. S & me 7 years to achieve.? After reading a few comments from yesterday's journal entry, I am thinking I need to share what Dr. S told the home health & home infusion directors in order to get everyone reading here to a similar place of understanding.Dr. S started the meeting by explaining that Joshua had been born with spina bifida and that was treated & no one anticipated it would be a big deal.? Then time went on & we learned about the chiari & then he was needing surgery for the chiari & to detether his spinal cord over & over again and no one was sure exactly WHY that was happening.? Then, when he was about 2.5 years old, the neurosurgeon came out of a surgery convinced there was something wrong with Joshua's brain stem and she advised Mom (me) to take Joshua to see the geneticist, who did testing because we all knew there was more going on than just the chiari.? The geneticist eventually found that Joshua had a rare chromosome abnormality and that was causing his brain stem to deteriorate and that abnormality would eventually lead to Joshua's death because the brain stem would stop working and he would stop breathing.? All of Joshua's life, surgery was the only effective treatment to get Joshua's brain moved away from his brain stem.? It is BECAUSE he had surgery over & over again that he has lived as long as he has.? Unfortunately, by the end of 2011, Joshua's brain stem had deteriorated to the point that the neurosurgeon said it felt like mush when she was inside his head.? She knew with absolute certainty that attempting another surgery ever again would kill Joshua, so she had to break the news that surgery was no longer an option for treating Joshua.Let me reiterate here because it is really important that this be understood:? surgery was the ONLY treatment option that made ANY difference in Joshua's survival because surgery allowed the neurosurgeon to remove pressure from Joshie's brain stem.? Having a chiari malformation is NOT what is killing Joshua. Having chiari is actually what HELPED Joshua because if he hadn't had chiari, Dr. W would not have done surgery and the pressure of his cerebellum against his brain stem would have resulted in his dying by the time he was 2 years old, just like every other child who has ever had the same chromosome abnormality.? I'm thankful for Joshua having chiari because God used it to keep him alive for 5 years longer than he would have lived otherwise. But still, once surgery was no longer an option due to the degraded state of Joshua's brain stem, we were pushed into new territory: palliative care.Palliative care seeks to manage pain in such a way that a person's quality of life is maximized, not prolonged.? In other words, once we knew we could never do surgery again, no matter what, our goal shifted to wanting to give Joshua the best quality of life that we could for as long as we could, using medication to "protect" him from the pain and thus make it possible for him to enjoy his days.Have you ever seen a child in extreme pain?? When they hurt, they sit still, unmoving, guarded.? But remove the pain and they go back to running, playing and laughing, even if the cause of the pain has not been eliminated. When Joshua hurts and the pain is not adequately treated, he sleeps excessively (as an escape), cries, lays down & doesn't want to move.? When he is protected from the pain in his head, he stays awake, laughs, jokes, plays.? He used to ride a trike, run & climb & swing at the playground and engage in other, age-appropriate and typical activities.? As his brain stem has continued to deteriorate, he has lost abilities & skills and there is no way to regain those.? His pain has also increased along with his tolerance (which happens when a person is on narcotics long-term), which has resulted in the need for higher doses of stronger pain medications.? And increased doses of pain medication bring with them the potential for side effects like respiratory & cardiac depression ~ making a person breathe slower and their heart beat more slowly. We have no more surgical options for Joshua ~ we haven't since the end of 2011.? All that is left is to keep him comfortable and as pain-free as possible so that he can enjoy however much time God deems he has left.? If he gets into a crisis situation where regular bolus doses of fentanyl are not enough to make him comfortable, the ONLY options we have at that moment are to give extra medication OR do nothing & let Joshua suffer. Doing nothing isn't really an option, though, so that leaves giving more medication as the only thing we can do.? And one risk of that choice is the possibility it could make Joshua stop breathing.? But when we consider the alternative, the risk is one we're willing to accept for this little boy who has a terminal condition and is going to die because of it.NO ONE is trying to make Joshua die faster.? NO ONE is assisting his death.? NO ONE is giving pain medication with nefarious intentions.? I pray almost every day that God will NOT let Joshua die from the side effects of narcotic administration.? I don't want my son to die from anything other than his brain stem ceasing to function.? That said, IF he gets into a pain crisis, I WILL give him the medication he needs to protect him from that pain and doing so would NOT be assisted suicide because the intention in giving pain medication is NOT to end his life... it is to alleviate suffering so intense that I have never been able to string words together that are adequate for expressing just how BAD it is.? In the opinion of my entire family & all of the medical professionals involved with Joshua's care, the only thing worse than Joshua dying would be for him to die while suffering from pain that we had the power to alleviate.Being able to accept that my child is going to die and the possibility that he will need pain medication in a quantity that could suppress his breathing when he reaches the end of his life is NOT assisting in his death.? He is not choosing to kill himself. I am not choosing to kill him!? His medical team is not doing anything to hasten his death. I have fought as hard as I can to keep him alive!? What we are doing now is recognizing where this train that we're on is heading & getting prepared for the scenarios that we might encounter when we start flying off the tracks at the point where the bridge is out.? We know Joshua's death is coming.? We do not know how or when it will happen.? As such, Joshua's medical team wants to make sure we are all prepared for every contingency they can think of.? I chose to share just one of those contingencies in my journal entry last night, but that does not mean that respiratory suppression from fentanyl is definitely going to be the cause of Joshua's death.? The fact is, even if Joshua does end up dying after receiving a dose of fentanyl, it won't be the fentanyl that killed him ~ it would be his BRAIN STEM that deteriorated & caused enormous pain & disability that forced us to give adequate pain medication to make Joshua comfortable that would be the true culprit. We would not be giving Joshua fentanyl if he did not have a terminal condition necessitating the use of pain medication.? It has been a process driven by a progressive deteriorating medical condition that has gotten us to where we are with Joshua.? We are simply doing our best to keep him comfortable so that he can continue to enjoy what he is able to do for as long as he is able to do it.133 people this Sign My Guestbook | Read Tributes Written May 21, 2013 12:31am by Kate Parker I attended a care conference today that consisted of myself, our pediatrician, her nurse, the heads of home infusion & home health & the nurse's supervisor (Emily stayed at the hospital with Bethany while I was at the meeting). It was emotionally draining, but I think they finally have an understanding of Joshua & where he's been & where he's going, so it was a good meeting to have. Listening to Dr. S detail how Joshua's brain is herniating out of his skull & how the neurosurgeon has literally cut away white matter from my son's brain multiple times in order to keep him alive but now there are no more surgical options, so all we can do is keep him comfortable while we wait for his brain stem to get compressed to the point he stops breathing was incredibly difficult.? I understood why Dr. S had to spell it all out so specifically for the other members attending the meeting (we NEEDED them to truly "get it" because up until now, they hadn't really understood Joshua's medical complexity), but that didn't make it less breathtaking (in a bad way) for me to hear.? I shared MRI pictures showing the same areas of Joshua's brain stem and spinal cord from 2008 and 2012 to give a visual understanding of how his brain stem has deteriorated and become kinked over time & to show how his spinal cord has gotten displaced within the spinal canal by the lipoma that continues to grow despite being removed over & over by Dr. W's surgeries and the scar tissue that Joshua's body overproduces.? I also shared pictures & video from 6 weeks ago when Joshua was walking around outside, playing with his siblings & friends & talking more clearly than he does now so the others could appreciate just how much he's lost in such a short time. That was another hard part for me... seeing how recently he was able to do so much more than he does now and wishing I could turn back the clock.The head of home infusion wanted to know what Dr. S would want them to do in the event of a pain crisis ~ if I call in the middle of the night saying I am giving Joshua bolus dose after bolus dose, but it's not enough to get him out of pain, what does she want them to tell me?? After some discussion, it was decided that if a pain crisis occurs ~ defined by the administration of 4 bolus doses over the course of an hour ~ I will be given the code to give an extra dose of fentanyl every 5 minutes until Joshua is comfortable again.? The home infusion guy was visibly stressed about the reality that if that scenario occurs, giving extra doses every 5 minutes could lead to respiratory failure, but when I asked him what was the alternative ~ to let Joshua be in horrible pain because we were afraid to give him too much medication? ~ he swallowed hard & agreed that withholding adequate pain medication wouldn't a compassionate action.? It's hard because these professionals are not accustomed to taking care of a dying child.? I am very appreciative of the fact that they are willing to step outside their comfort zone and provide Joshua with the services he needs to be able to die at home rather than in a hospital.Dr. S told everyone how Dr. G, a pediatric palliative care & pain management specialist, is calling the shots regarding pain meds and their dosages, and she made sure everyone attending (aside from me) understood that she, her nurse & I have been riding this train with Joshua for 7 years and they are all just getting on-board at the very end, so we don't need them to come in & try to make ANY changes.? All we need is for them to support what is already in place. She looked at the home health and home infusion people & told them, essentially, "You all will be in this child's life a very short time.? You will come & go pretty quickly.? My nurse & I have known him since the day he was born, but we are still just his doctor & nurse. This mother, however, has a relationship with Joshua that will go on forever because he is her son.? She is going to remember every single event surrounding the time leading up to her child's death until the day she dies because she is his mother.? It is our job to do everything we can to support this mother & her family & ensure that her memories are as peaceful as they possibly can be.? And the way we do that is by making sure Joshua is pain-free and comfortable."? She looked around the room at each person, then added, "Kate has made and continues to make good, compassionate, caring, loving choices for Joshua."? I listened to her speech & had to bite the inside of my cheek to keep myself from crying.? Listening to Dr. S advocate for Joshua & me was gratifying.? There is something incredibly comforting about knowing with certainty that someone is committed to walking a road with you, no matter what comes along, and I am so grateful to have the support of our pediatrician, a woman who is emotionally invested in my little boy & has made it clear she will do everything possible within her power to help me make his passing from this world to heaven gentle & pain-free & peaceful.? I could not ask for anything more.? 131 people this Sign My Guestbook | Read Tributes Written May 19, 2013 7:38pm by Kate Parker Joshua remains stable, with excellent pain control.? He is not as talkative & today, he hasn't been as interested in eating or drinking as he usually is.? On the plus side of the equation, he sat & played with legos for about an hour and he used a small, plastic, hand-held magnifying glass to examine a snake that Megan caught in the yard & brought into the house to show her baby brother.? That brought multiple smiles and even a couple giggles, which were sweet to hear.Joshie is tired.? Not sleepy, on-narcotics tired, but worn out.? We can see it when we look at him.? We can hear it in his voice.? He continues to make the best of everything because that's just what he does in every situation, but the difference in his countenance is hard to ignore.? Adam made this video in August, 2011, when no one thought Joshua would live to see 2012 (and as we know, he wouldn't have if Dr. W, our wonderful neurosurgeon, hadn't done 3 final surgeries in November, 2011) and it's been a song that has been playing in my head lately when I look at Joshua.? Despite everything he endures (past & present), he still finds a way to smile.? He is so brave & strong & he makes me want to live better... to be the kind of person God is pleased with... if for no other reason than because I have been given the opportunity to do so.101 people this Written May 17, 2013 1:08am by Kate Parker With the hospice snafu behind us, there are now new decisions to be made as we move forward with figuring out what is the best road to take for Joshua. It was predicted that he would not live more than a couple of weeks after we stopped TPN almost 2 weeks ago, yet he isn't giving any indication that he is about to die. While he is eating & drinking less than optimal amounts, it is enough to keep him going with only a slow weight loss. I am requesting prayer for WISDOM as Dr. S speaks with Dr. G tomorrow (Dr. G is the palliative care doc in Portland) to get advice before she (Dr. S) and I sit down with home health & home infusion for a meeting next week to lay out our plans & hopes for Joshua. As Dr. S put it in one of her emails we exchanged tonight, "We need guidance during this hard time."Joshua is comfortable ~ not having head pain at all, thanks to Dr. G's expert titration of his fentanyl to the perfect level ~ and he is content.? His activity level is substantially less than it was a month ago & his frequency of apnea & other brainstem-related symptoms have substantially increased.? We see him deteriorating, but it's very slow overall. Joshua says he wants to go to heaven now, but only God can make him stop breathing, so he doesn't know when he will get to go.? As the weeks go by, he "lives" less & "exists" more.? It's sad to watch this happen to him, but there isn't anything we can do to stop the process & there isn't anything we are going to do to speed it up because... duh... no one is in any rush to say, 'Goodbye' to the little boy we love so muchWritten May 16, 2013 1:36am by Kate Parker As promised, here are some pictures from Adam & Faith's wedding.? I included several sweet pictures of Joshua.? He was *such* a precious little 'ween dye'.? We had placed the rings inside a velvet drawstring pouch to prevent them from being dropped or lost, and even though we'd rehearsed how he was supposed to do his job, when the time came that the minister asked for Faith's ring, Joshua smiled as he handed her the entire pouch and said in a cheerful voice, "Here you go!"? Everyone laughed & Adam immediately turned to his baby brother & said, "You just need to give her Faith's ring, remember," as he handed the pouch back.? Joshua grabbed the drawstring but needed some help getting the pouch opened, so Adam assisted with that step.? After that, Joshie knew what to do & things got back on track.? We all just smiled throughout the whole scene because it was cute & Joshua was so earnest in handing over the rings.I hope you enjoy seeing photos from Adam & Faith's special day.? Thank you, again, for all of your prayers, well-wishes & support! people this Sign My Guestbook | Read Tributes Written May 14, 2013 7:05pm by Kate Parker Joshua was KICKED OFF hospice today because the hospice medical director had planned to come to my house to meet Joshua and I had to cancel that appointment in order to take Bethany to see the pediatrician & get her admitted to the hospital. Nope, I am not kidding one iota. The hospice medical director called our pediatrician & said that since she is not being allowed to see Joshua, she's kicking him off hospice. No one said she isn't allowed to see Joshua. Charley had called hospice yesterday (as soon as we learned I would have to take Bethany to see Dr. S) to give the message that I had to take our medically-fragile daughter to the doctor and would not be at home to meet with the doctor at 10am; as such, we would need to reschedule. When Dr. S heard the medical director say she was kicking Joshua out of hospice, she (Dr. S) told the doctor, "That's fine. I'll be seeing Mom at 11am when she brings in her extremely-sick little girl, so I'll let her know." So she corroborated my "story" (which was the absolute truth, anyway) to the hospice doctor, but the reason for canceling the appointment wasn't acceptable to the doctor & she kicked him out. Think there's a medical director who has some ego issues???? I do!!!I'm incredibly relieved to be done with hospice, actually.? The organization is not accustomed to caring for dying children & both Dr. S and I were frustrated with their attempts to jump on the train we've been riding for 7 years & tell us that we were doing everything wrong, giving Joshua the wrong medications, and that he wasn't actually in pain ~ it was just anxiety. You'd think that a hospice organization that gets just 1 kid every 3-5 years & has zero experience with a child who has a chronic, deteriorating illness would look at Joshua and realize they don't have a clue and would therefore LISTEN to the experts ~ that'd be me & Dr. S, Dr. W & Dr. G ~ and they would get on-board with what we are doing for him.? Unfortunately, that did not happen.? The good news is that we'll revert back to home infusion + home health and now I can go back to focusing on my child with the confidence that the medical professionals who care about him & KNOW him are making the decisions rather than the incompetent people who were supposed to be making this time easier, but instead were creating stress galore for my family.? 118 people this Written May 12, 2013 11:54pm by Kate Parker (Entry 2 of 2 for 5/12)The difficulty urinating & pain returned this afternoon.? I contacted Dr. S & she called her office to have a nurse fax orders for a urinalysis & culture to be done at the hospital.? I obtained a clean catch sample & dropped it off at the lab.? The result showed no infection.? Everything looked normal.? While that's good, obviously, it means the pain Joshua is experiencing is most likely that of bladder spasms being triggered by his brain "misfiring" and sending messages to the nerves of his bladder to contract repeatedly rather than in a smooth motion like it's supposed to (further physical evidence of the deterioration that is occurring inside his little head).? Placing a hand on his lower abdomen while he's trying to pee allows one to feel the ripples of erratic bladder contractions.? It's no wonder Joshua hurts & is having trouble going.Dr. S will be faxing a prescription for Ditropan (oxybutynin) to the pharmacy first thing tomorrow morning.? In the meantime, I have Lorazepam (Ativan) on-hand and with Dr. S's permission, I gave Joshua a dose of that this evening.? It's the first time he's had a sedative at home & the effect has been a bit comical.? He's slow with his speech & response time and? he is *very* relaxed.? It's helped him to urinate without as much pain, too, which is why I gave it to him.? I wouldn't want to have to give him this kind of medication very often, but I'm thankful to have it for times when it's necessary.92 people this Sign My Guestbook | Read Tributes Written May 12, 2013 1:00pm by Kate Parker (Entry 1 of 2 for 5/12)Joshua is still with us.He woke at 7:30am after peeing & excitedly told me, "It didn't hurt to pee!"? He went back to sleep after I changed him & got him into a dry shirt, but before he did, I asked, "Does this mean you don't want to go to heaven yet?"? He answered, "I still want to go, but God knows when it's time.? I thought it was time yesterday.? I guess I was wrong. But God made it so I can pee and it doesn't hurt, so everything is normal again!"I am thinking that while Joshua IS ready to go to heaven & definitely wants to go (who can blame him?), yesterday's begging to stop breathing was the result of uncontrolled pain caused by his bladder hurting him so terribly.? I think he didn't know what else to do but beg God to take him to heaven, where he knows nothing will hurt ever again.While my family & I are sooooooo relieved to have Joshua still with us today, we will continue to pray for God to give Joshie the desire of his heart. Yesterday showed me that we are all as ready as we'll ever be for Joshua to leave us for heaven and as such, I'm not fearful anymore.? I will never WANT Joshua to leave us, but the peace that filled my house yesterday & last night, especially, has made me certain that when the angels do come to take Joshua Home, God's Spirit will be here to make it possible for us to let him go. 115 people this Sign My Guestbook | Read Tributes Written May 12, 2013 2:21am by Kate Parker (Entry 3 of 3 for 5/11)Joshua is laying in bed with me beside him. He has been talking about all the things he remembers from our various hospital stays. Things from when he was 2 & 3 years old. At one point, he stared directly into my eyes and told me, "You have been a good mommy. You always did your best for me." Then he prayed that God would make him stop breathing tonight while he sleeps, but if he can't stop breathing, would God make it so it doesn't hurt to pee tomorrow." Then he closed his eyes and gave me one more kiss before singing quietly, "Mommy mommy mommy, I love my mommy." I kissed him again & whispered, "I love you and I will either see you in the morning or I'll see you in heaven, okay?" He nodded slightly and breathed, "Okay."I could not love this child more than I do this very minute.I have NO idea if Joshua is going to die tonight or next week or next month and I am not trying to get people worried.? It is important to me to write down the things he is saying, though, in case God grants his request tonight.? I don't want to forget any of this & I don't want to have to worry that I didn't remember it correctly, which is why I'm jotting it all down right now.112 people this Written May 12, 2013 12:54am by Kate Parker (Entry 2 of 3 for 5/11)We had a weird experience a few hours ago. Joshua was flailing around, trying to get comfortable, when he suddenly calmed down & announced that he wanted to go to heaven now. He said it over & over & over. I assured him he could go... it was okay... and he asked me to tell everybody that we were going to heaven now. All of the kids came over one by one & Joshua told each of them, "We're going to heaven now." They were all incredibly calm & lovely & truly just amazing with him... they told him things like, "Okay. I'll go pack your Cuddle-up-it & Crocky (stuffed animals) & I'll carry Perry (the Platypus) since he gets scared on long trips." They hugged & kissed him & told him good night. Joshie told Charley, "We're going to heaven now, Daddy," and Charley hugged & kissed him and said, "Good. I'm so happy. I want to go to heaven with you. I'll see you there." That almost made me cry, but I held it together. Joshie grabbed my hand and then he announced, "Okay, everybody stop breathing." The adults looked at each other like, "WHAT?!?" After a minute, with his oxygen level going down & his heart rate shooting up, Joshua said, "This is hard" (to stop breathing). Megan busted up laughing & then we all kind of chuckled with relief & worry. Joshua has insisted he still wants to go to heaven now. I have no doubt that he does. He has had a lot of pain today with urine retention & bladder spasms.? I thought maybe he had a UTI or bladder infection, but now I am pretty sure it's bladder spasms versus an infection of any sort.? I'm not sure what we're going to do about that, but I will hear back from Dr. S soon.Please pray that God would give Joshua the desire of his heart. It is beyond difficult to watch him hurting & to not be able to alleviate it in any meaningful way. He has fought long & hard. If he truly wants to go to heaven (and God knows the answer to this), our prayer is that he would be granted the desire of his heart. I can't beg to keep him here... not when he is clearly suffering in ways that we can't fix & he is praying repeatedly throughout the day, "God, please let me go to heaven now.? Amen."63 people this Sign My Guestbook | Read Tributes Written May 11, 2013 5:22pm by Kate Parker (Entry 1 of 3 for 5/11)Time marches on & our days have fallen into a loose pattern with regards to Joshua.? He continues to show signs of deterioration, but instead of the fast end that his doctors thought would happen when he was removed from TPN, Joshie is once again doing things his own way & taking the scenic route as he gets ready to depart from this world.? Though it leaves everyone hanging & kind of holding our breath at times, we are always thankful to have gotten one more day with our Joshiebear.He is still sleeping about 15 hours every day.? He gets 12 ounces per day of formula through his g-tube and he drinks up to about 16 ounces of grape juice.? He still eats, but not as much as before.? Interestingly, he is not going into "vomit universe," which has *always* happened throughout his life when he got even slightly fluid-depleted.? That leads us to suspect he's got some "shutdown" going on, but we know that is to be expected.? He hasn't played on the Wii in the past 4 days (today will be day 5).? He hasn't played on his iPad, either.? He sits at the computer & either plays a game or watches movies.? That is pretty much the extent of his activity now.? Cuddling is difficult for him because he finds it hard to get comfortable.? That's been hard for me to get used to, but I console myself with being able to snuggle my boy when he's asleep.? He has increasing apnea, coughing, choking on anything from food to saliva, and he's always tired.? His pain is very well-controlled today.? It was well-controlled yesterday, too.? The day before required some tweaking to get him feeling all right again.? Pain management is now a day-by-day project.? Thankfully, Joshua's comfort is the top priority for our pediatrician & palliative care doctor.? One phone call from me is all it takes to get adjustments ordered, so the end result has been good for my boy.? His hearing has become extremely sensitive and random sounds cause him physical pain.? If someone accidentally scratches their fingernails on a pillowcase or laughs with a certain tone/pitch in their voice, Joshua will cringe & tear up.? It's not a put-on or a fake thing.? He is genuinely pained by the sound.? As a result, everyone is needing to be very careful so we don't trigger anything that will hurt Joshie's ears.? Hospice has been... um... challenging.? Living in a smaller town means the hospice programs are not accustomed to children; as such, we are trying to tailor an adult hospice program into what a child needs.? And not just any child, either.? The hospice program here has only had children on their service (1 child every 3-5 years) who were dying from cancer.? As such, they had flow charts that could be printed out (literally) to give the hospice personnel a road map of how to treat the child appropriately.? The hospice team has never taken care of a child who has been chronically-ill & is dying from a condition that has no literature available to give them any idea of a road map.? As such, there are a lot of misunderstandings, missteps & challenges happening.? The past few days have been filled with so much stress that I finally lost my cool & snapped at a few people, telling them that I thought hospice was supposed to make the process of losing Joshua EASIER for my family, not harder. I am sure the organization is wonderful for adults.? They are very much out of their element with a child, though. Some are trying and have said they really want to figure out how to "do this right" for Joshua.? Others are having their pride squished & feeling threatened because two pediatric specialists are refusing to give up control of Joshua's care (which I wholeheartedly support ~ no way am I comfortable letting ANYONE other than Dr. S & Dr. G call the shots with regards to Joshua's medications at this point... especially not a doctor who specializes in geriatrics!).? I think what it comes down to is there is an adjustment period when a person transitions to hospice & our entry into the program has been bumpy.? If the bumps can get ironed out in a reasonable amount of time, we'll keep Joshua on hospice.? If it looks like there are going to be insurmountable differences of opinion amongst the professionals, we'll pull him off and go back to what we've been doing.? Either way, as long as Joshua continues to receive what he needs (pain & IV meds & a nurse over here to change out his port needle & dressing each week or to provide me with the supplies to do it, myself), I don't care what "umbrella" he is under.? I just want this to be peaceful & easy for him and if I am being forced to spend multiple hours a day dealing with hospice internal politics & other garbage instead of spending time with Joshua, then hospice isn't worth it.97 people this Sign My Guestbook | Read Tributes Written May 8, 2013 12:32am by Kate Parker I want to give an update since I know people care & are checking in to see how Joshua is doing.? There isn't a lot to say today, though, which I guess could be interpreted in several ways, but I'm not being coy.? Today has been pretty much like yesterday.? Joshua woke after 15 hours of sleep, played at the computer, rested, watched a movie, rested, played at the computer and that's where he is right now.? He has eaten several Fruity Pebble bars & Cocoa Puffs bars and has had about 12 ounces of grape juice plus the half-ounce per hour of pedialyte that goes through his g-tube.? He has gotten a half-dozen breakthrough doses of fentanyl in addition to the continuous drip that gets pumped through his port into his veins.? He is somewhat restless, switching positions frequently in an attempt to get physically comfortable.? His tolerance for noise is not good even though he, himself, has zero volume control & speaks loudly at all times.? His voice remains hoarse & he often squeaks when he talks, which would be funny if it weren't indicative of his progressing condition.Other than that, there isn't really much to talk about that wouldn't be a repeat of things I've already said.? We're all doing okay ~ as good as possible under the circumstances ~ and taking things one day at a time.? 116 people this Written May 7, 2013 12:21am by Kate Parker I had to slow the rate of pedialyte being fed through Joshua's g-tube because 1 ounce per hour was making him nauseous & that, in turn, made his head hurt more. He's back down to 1/2 ounce per hour and as long as he can tolerate that rate, we'll keep him there. This afternoon, he had a couple hours of needing to get bolus doses of fentanyl every 15 minutes, which made him incredibly sleepy & spaced out, but then everything settled down & he enjoyed laying on the floor beside his brother, resting comfortably & watching a movie (Phineas & Ferb).? The rest of the night has passed uneventfully, with a few doses here & there of fentanyl, but nothing overly worrisome.Oh, and he's completely off TPN now.? I disconnected him at noon today & that was it.? I keep telling myself that it doesn't matter that he isn't getting TPN anymore because optimum nutrition isn't going to stop his brain stem from failing.? Still, it's hard.? But the truth is, everything about this process is hard.? Every. Single. Thing.? Losing TPN is just one more "thing" added to the pile.In other news, the hospice case manager came out this afternoon to formally admit Joshua to the program.? It wasn't anything monumental ~ just signing some forms for consent & insurance and chatting with the nurse.? We agreed that the overall plan is to keep Joshua comfortable & take this one day at a time for however many days he has left.? She didn't have a lot of new information for me, but since I had no expectations of the meeting, it was fine.I don't know what else to write about tonight.? I'm tired & feeling down.? Hopefully tomorrow will be better.? G'nite!88 people this Sign My Guestbook | Read Tributes Written May 5, 2013 11:45pm by Kate Parker “How lucky I am to have something that makes saying goodbye so hard.” ~ A.A. Milne (Winnie the Pooh)? I read this quote tonight & thought how very appropriate it is.? How fortunate I am to have Joshua in my life even though the incredible specialness of him makes knowing I will have to say goodbye (even temporarily) so difficult. ?Things are okay.? There are emotional ups & downs each day, but mostly, we're just kind of riding the waves as they come.? Joshua continues to need increasing amounts of fentanyl at increasing frequency.? He also continues to enjoy watching movies & playing Minecraft on the computer.? His world is very small now, but he is still happy despite his limitations.? That's something Megan & I were marveling at today as we scrolled through pictures of Joshua ~ he almost always has a smile on his face.? Despite everything he's gone through, he's remained full of joy.? That truth is nothing short of amazing.? Tomorrow, he'll be completely off TPN.? He is tolerating 1 ounce per hour of pedialyte through his g-tube.? He eats Fruity Pebble bars (they're similar to Rice Krispy treats), an occasional few bites of egg sandwich (egg & cheese on toast) and drinks grape juice.? I'm not sure how long a child can be sustained on that, but that's the extent of his diet. He is having increasing bouts of apnea and dysautonomia, though he is only mildly bothered by them at this time.? He will calmly announce that he was having trouble breathing after a big desat or complete apneic episode.? We calmly ask if he's okay now & tell him, "Good," when he answers that he is.? It's fairly surreal, actually, how everyone is just sort of accepting where Joshua's at and where things are going.? We had a few very hard days, but now we're all just kind of numb as we wait for the train to hit us.? We are spending as much time with Joshie as we can, kissing & hugging him frequently throughout the day & night, staying up as late as he wants and basically catering to his every whim because we can.It is a very odd place to be, this "waiting for the end to come."? Hearing that it's only a matter of time & having nurses coming over frequently to help prepare my family for the impact of losing Joshua, yet looking at my child who still seems so alive despite the war being raged within his body & not truly believing that he won't be here much longer. I think this is what denial feels like.? Maybe that is why I feel so calm.? I almost don't believe it's going to happen soon even though I'm being told it is & those around me are getting things in place for what they know is coming and Joshua, himself, talks daily about going to heaven.?? Maybe it's not a healthy way of coping, but honestly, I didn't consciously choose to go this route & I don't know how to get on a different path.? As long as I keep everything on a theoretical plane of existence, I can function.? As soon as I acknowledge that this is happening to MY little boy and I open the door to my feelings, I fall apart.? Since I have a sick little girl in addition to a dying little boy and 6 other kids who need a mother to help them get through the most-awful experience of their lives, I can't indulge a giant fall-apart for myself right now.? After the train hits & Joshua is gone, I will let myself grieve however I need to.? But for now, keeping the emotions compartmentalized & out of the way for the majority of the day is the only way I am going to get through this with my sanity even remotely intact.? Denial is the name of the game & it seems I am pretty good at it. 108 people this Sign My Guestbook | Read Tributes Written May 4, 2013 12:45am by Kate Parker Today was another tough one, emotionally.? Joshua is sleeping more, which is to be expected considering the amount of fentanyl he is getting via continuous drip.? I got home from spending several hours at the lab & doctor's office with Bethany just in time to meet the home care nurse, who was at the house to do Joshua's weekly de-access and change of his port needle & dressing.? We had to wake Joshua so we could bring him downstairs and after I used a bunch of detachol to loosen the dressing over his port, the nurse de-accessed him (removed the needle) and Joshie got his weekly full-immersion bath. Afterward, I was able to hold my little boy on my lap and cuddle without him being hooked up to anything ~ no lines to get in the way ~ for about 5 minutes before he said his head was starting to hurt a lot, at which point the nurse & I knew it was time to get him re-accessed so the fentanyl could start flowing again.? Re-accessing went smoothly and Joshua informed us that God was making the pokes not hurt very much anymore (I'm sure fentanyl helps, too).? After we had everything reattached and the pumps going, I was taught how to give IV meds & clinician boluses of fentanyl.? It's not difficult to do, but it was still a new thing to learn. Joshua's TPN was reduced by another 50%, making the new rate 12.5ml per hour, which it will run at until Monday, at which point TPN will be discontinued.? His fentanyl pump was reprogrammed to allow bolus doses to be given every 15 minutes, if needed, at a rate of 250mcg per dose.? That is in addition to his basal rate, which is 150mcg per hour via IV and 175mcg per hour via patches.? The nurse and I talked about more specifics regarding what the end could look like for Joshua.? I learned that in respiratory failure, shallow breaths and long pauses between breaths and periods of apnea (no breathing at all) occur until there are no more breaths drawn at all.? He could have anxiety or agitation or seizures caused when his brain "misfires".? If a dose of fentanyl causes him to stop breathing, it could occur very quickly after the bolus dose button is pressed.? If his brain stem triggers the respiratory failure, the odds are it will occur during the night.? It makes me glad that we added a hand-held trigger that allows Joshua the ability to press a button to deliver a bolus dose himself because otherwise, I would have trouble wanting to push the "dose" button on his pump, knowing there is a risk of it causing him to stop breathing forever.? Unfortunately, when the choice facing us is either medicate Joshua so he does not suffer enormous pain and risk that medication causing him to stop breathing OR withhold medication and cause him enormous pain that would interfere with his ability to have any quality of life, we really don't HAVE a choice.? I've known for two years that this day could come.... now that day is here.? If Joshua needs multiple doses of pain medication in quick succession, there is a very real risk that adequately treating his pain will result in the cessation of his breathing.? His brain stem has reached the point of dysfunction that this is the cold, hard reality we are living with now.At this point, it is not anticipated that Joshua will be here two weeks from now.? Of course, he could surprise everyone and live longer than that, but still, that is the prediction.? I honestly can't imagine him not here... I just can't.? I cannot imagine NOT hearing his sweet little voice or kissing his cheeks or feeling the weight of him in my arms anymore.? I'm not going to try to imagine it, either, since the reality is too-quickly approaching.Tomorrow, a pediatric hospice home care nurse will be coming over to teach me how to place an indwelling foley catheter for the time if/when Joshua is not able to pee voluntarily.? Since fentanyl can make urinating difficult, especially at high doses, and Joshua is able to pee only in one particular position (a crouch) due to his neurogenic bladder, it is realistic to anticipate a time when he is unable to get into the position necessary to empty his bladder.? At that time, I would place a foley catheter that would stay in his bladder to keep it empty.? I am comfortable cathing Joshua since I used to do it 4 times a day, but I've never placed a foley before. I know it is easy to do ~ just insert the catheter and inflate a balloon with sterile water to hold it in the bladder and then adhere the tubing to the leg with a foley stat-lock so it doesn't get tugged or pulled out and attach a collection bag for the urine to drain into ~ but the nurse is going to come over to talk me through the procedure in case Joshua needs a foley placed at a time when a nurse is not readily available to come over & do it.On Monday, a hospice nurse will come over to admit Joshua to the hospice program.? An infusion nurse will come over to discontinue the TPN & change over the tubing since we will no longer need the line currently being used for TPN & lipids.? Then Cece, the nurse we have already gotten to know (and really like), will come over on Wednesday.? Too many emotions are swirling around in my head & heart for me to write coherently at this time.? This entry was simply to detail the latest developments in order to keep those reading about Joshua "in the loop" and to help me in remembering how things progressed when I come back some day to re-read his story.117 people this Written May 2, 2013 8:53pm by Kate Parker On Monday, Joshua will be transitioned to hospice.? Yes, I know it's a good move & that hospice can provide support and help and all that.? I also know that the words "hospice" and "Joshua" should never have to be used in a sentence together.His voice has gotten very hoarse, which is a chiari symptom.? It just means pressure is building up inside his head.? Nothing we haven't seen many times before.? Only difference is, this time we can't do anything about it except increase pain medication, as needed.He has been spent today playing a computer game with his biggest brother, interspersed with cuddles for mom & kisses for anyone who asks for them.? Adam took about 5 minutes of video as Joshua played silly games with Faith.? Listening to all of them laugh was sweet music to my ears.He's pushing his button for extra fentanyl quite frequently.? I am sure we'll be increasing dosages & frequency tomorrow.? Our pharmacist told me, "I imagine it feels like you're on a runaway train that has no brakes and you've heard there's a bridge out ahead."? I told him that was an apt analogy & shared with him my friend's analogy about being stuck on train tracks & knowing a train is coming.? I would wish the train could just hit me and get it over with except that would mean less time with my little boy & no matter how emotionally exhausting this time is, I refuse to wish it away.? Instead, I'll wish for the strength to continue going & a steel-trap memory to remember all the details.116 people this Sign My Guestbook | Read Tributes Written May 2, 2013 12:41am by Kate Parker Joshua's TPN has been reduced by 50%. On Friday, it will be further reduced by another 50% and then he'll be done with TPN on Monday. I'm supposed to start a 15ml/hr g-tube feed of pedialyte which he will hopefully tolerate. That will give him 12 ounces of fluid per 24 hour time period plus whatever he drinks by mouth. It won't be the 54 ounces per day that he needs to stay hydrated, but it'll keep him comfortable.His fentanyl has been increased (the continuous drip) and on Friday, if he's still needing a lot of breakthrough doses, we'll increase both the continuous rate & demand dose amount.I'll be receiving doses of IV zofran & valium to have on-hand to give Joshua if he has nausea/vomiting and/or terminal agitation. The home care team would like to transition Joshua to hospice. Dr. S & I will make a decision about that on Friday. While Joshie definitely fits the criteria for a hospice patient, there are other factors to consider (such as whether Dr. S would still be calling the shots & how would the chain of communication work out ~ right now, I can call Dr. S directly versus having to go through a bunch of nurses first and we'd like to keep it that way). I'm not concerned about it... the decision to transition him will be made if it needs to be made. All I care about is keeping him out of pain in the simplest manner possible. We brought Joshua downstairs tonight so we could make more 3D hand castings.? Faith wants one of her & Joshie holding hands and both Adam & I want new ones with him, too, since his hand has grown since the last time we made castings.? I am hoping Joshua will want to cuddle for a bit tonight, too.? I'll update again tomorrow.97 people this Sign My Guestbook | Read Tributes Written May 1, 2013 1:58pm by Kate Parker Joshua is still with us.? He's currently asleep, but aside from some increased head pain that made it difficult for him to fall asleep last night, I am not seeing anything going on that would make me think he is going to heaven today.? Our pediatrician is talking with the palliative care doctor today & will be calling me around 2pm to discuss weaning Joshua off TPN & attempting to feed him & keep him hydrated through his g-tube again.? I don't think anyone expects this to be wholly successful, but TPN was a temporary measure intended to get Joshua to the wedding & now that the wedding is over, we will lose TPN as a treatment option (insurance mandated decision).? I think I'll be told by Dr. S that the plan is to feed Joshua to his comfort level, not necessarily try to push him to accept the volume he technically needs to remain completely hydrated.? I don't know for sure, though, so I'll wait to speak more on this topic until after I've talked with her this afternoon.Joshua has been in predominantly good spirits.? Most of the time, he isn't in pain, but when it does hit, it hits *hard* and then it's a struggle to get him comfortable again.? Dr. S knows of this change & will have a plan of action when she calls later.? I've made it very clear that all I want is for Joshua to not hurt, so I anticipate a good plan being implemented to make that goal possible.I have no idea what this day or any day beyond it may hold.? I do know we all are being held in the hand of God & that we aren't walking this journey alone.? Thank you for the many prayers.? My family is feeling peaceful & we are all enjoying time with Joshua, knowing it is growing shorter but trying to not focus on a specific day or time just because our 7 year old has been so adamant about when he is going to heaven.? I have no idea if he has any "control" over when he will die.? I don't know if it will be today or tonight.? I realize it could happen and yes, I will stay close to him all day long just in case it does, but I will not be surprised if tomorrow comes and Joshua is still sleeping by my side.? I know he WANTS to go to heaven and I know he is ready to die, but wanting something and being ready does not automatically equate to it happening.? Only time is going to tell if Joshua had some insider knowledge.? I won't be shocked if he did.? I also won't be shocked if he didn't.? In the end, it isn't going to matter because he WILL get his wish of going to heaven to be with Jesus even if he was not entirely correct about the date it was going to happen. ?? 104 people this Joshua Parker's Journal Written April 30, 2013 12:08am by Kate Parker Two quick pictures ~~ one of the gorgeous couple & another of the ultra-special best man/ring guy. was *everything* we wanted it to be:? a truly lovely, incredibly special day for Adam & Faith.? Really, it could not have been more perfect.? Joshua was fantastic in his role of best man and "ween dye".? The photographer got wonderful shots from the day.? It will take a few weeks to get the pictures, but once Adam & Faith have them, I will make an album to share with you all.Joshua was in great spirits for the majority of the day.? He was tired after the ceremony, but a short rest at home before the reception started revived him & he was delightful for another few hours.? He did have a few bouts of needing extra pain medication and it hurt his head when everyone laughed loudly, but he was predominantly joyful & he really enjoyed the day, which was exactly what I was hoping & praying for.? Thank you *so much* for the many, many prayers covering Joshua & the rest of my family today.? God blessed us with an amazing day we will never forget.? I look forward to sharing pictures as soon as I can.? :)122 people this Sign My Guestbook | Read Tributes Written April 28, 2013 11:04am by Kate Parker Forty-eight hours after increasing Joshua's basal rate of fentanyl & his bolus doses (for breakthrough pain), we had to increase the frequency with which he could receive those bolus doses because despite the increase in amount of medication, it still was not being allowed frequently enough to control his head pain.? Now that we can administer a breakthrough dose every 30 minutes, things are back under control ~ yea and thank you, God, for compassionate doctors & nurses who are doing everything they can for my little boy.On Friday afternoon, it was "port dressing/needle change & bath day" for Joshua.? We remove the dressing from his port, de-access him (take the needle out of his chest) and then he gets a bath before being re-accessed (new needle inserted into his chest) and hooked up to his fentanyl & TPN & lipids once again.? Typically, port changes elicit lots of tears and trembling and apprehension for Joshua, but this time, he was calm & chatty as I gently removed his dressing by using detachol ampules to loosen the adhesive & slowly pulled the tape & tegaderm off.? He asked Megan to bathe him and the nurse & I smiled as we listened to him laughing & joking with his sister in the bathroom.? When we went to re-access him, he didn't cry at all ~ he actually smiled through the procedure, announced that it didn't really hurt & was utterly calm.? VERY unlike our norm for that process!? He told Debbie, his nurse, "Today is the last time you have to poke me because after the wedding, I'm going to heaven!" He told us that Jesus will take out the needle once he's in heaven but it won't hurt because nothing is going to hurt him ever again. He was smiling & giggling as he talked, kicking his legs in the air & acting positively giddy. I smiled back at him & agreed with all he was saying even though my heart was beating faster at his words. Debbie couldn't talk because she was trying to hold back tears. Later, she asked Joshua if he wanted to keep getting TPN after the wedding and he told her with a big smile on his face, "Nope! I won't need it 'cuz I'm going to heaven!"? After the visit was complete, I walked Debbie to her car so we could talk privately for a few minutes.? She told me that from her experience, she has learned that kids often have God's ear when it comes to things like this, and she thinks we should really listen to Joshua and what he is saying because in her opinion, his confidence & absolute assurance of what is coming makes her believe he knows something.? She hugged me & I thanked her for her insight.On Friday night, as Megan, Emily & I were getting Joshua tucked into bed & going through our usual routines, he said he wanted to wear his pulse ox because just in case he went to heaven that night, he wouldn't want me to wake up, see that he is gone, and think that he had been kidnapped.? With straight-faced agreement, I told him I thought that was a good idea because I want to know when it is time to go to heaven & even though he has told me he would let me know when it is time to go, he might be asleep and wouldn't wake up to tell me, but his pulse ox would beep so I would know.? Joshua agreed with me and said he will grab my hand and tell me, "Mommy, it is time to go now!"? Then he made his sisters & me laugh when he told us, "When I get to heaven, I am going to sing (imagine his fists being raised in front of his body & shaking wildly as he sings the Kool & the Gang song), 'Celebrate good times; come on!' because my head won't hurt anymore!? And then the people in heaven will ask why I am singing & I will tell them, 'Because my head doesn't hurt anymore!' and then all of the people will say, 'Let's sing with Joshie!' and they will sing, 'Celebrate good times; come on!' with me!"? He went on to add, "I am going to sing & dance and I will breakdance & spin on my head since I can't do that here because it would hurt my head super-bad & I would have to go to the hospital."? Megan, Emily & I told him that sounded like so much fun & we agreed that the people in heaven were going to be SO happy that his head doesn't hurt anymore & we knew they would love his singing and dancing because we sure do.? After a moment of thinking, Joshie giggled & announced, "Then I am going to lay on my belly and say, 'Oh, it hurts,' but then I will laugh & say, 'I'm just kidding!'? And the people will laugh and say, 'Oh, you're so hilarious, Joshua!"? Adam had joined us in the room & he told his brother, "People will know that things don't hurt in heaven," to which Joshua replied, "They might think it didn't work for me." (not hurting).? Then he told all of us, "Tell your friends not to say anything!"? because he doesn't want the people in heaven to know about the joke he is going to play on them when he arrives.? We all assured him that we would not tell the people in heaven and we laughed & agreed with Joshua that it sounded like a really funny prank.? :)? He smiled with satisfaction & said, "I will be meeting new people and I will joke with them."? He is very much looking forward to it (in case you couldn't tell).Every night for the past 3 nights, Adam & Faith have sought assurance from Joshua that he is going to keep breathing until their wedding.? Each night, he promises he will.? The first night, after they'd gotten their promise, Adam asked his brother, "You know you can't go to heaven the night that we get married, right?"? Joshua replied, "Yes, I can!? It's my choice!"? Adam told him, "Well, weddings go for 2 days, Joshua ~ there's the wedding ceremony the first day and then there's the party after that and then there's a special family time the next day.? So you have to stay for at least one day after the wedding, okay?"? Joshua gave it some thought before answering, "Okay, I will stay for 2 days after the wedding.? But then I want to go to heaven."? Adam gave his baby brother a hug & agreed that 2 days would be great.? Then Faith chimed in with, "But WAIT!? Joshie, I'm a Filipino and in the Philippines, our weddings last for a week, so you have to stay for 7 days after Adam & I get married!"? (That isn't true, but she & Adam were trying to get Joshua to agree to more time) He laughed and said emphatically, "You're not there anymore!? You're HERE!? So no!? Two days only!"?? Faith gave Joshie a sad face & asked, "Five days?"? Joshua was laughing hard as he countered, "Two!"? Adam asked with exaggerated hopefulness, "FOUR days?"? More laughter from Joshua as he again insisted, "No!? TWO!"? Faith once again tried.? "Three?" she asked with a sweet smile.? Joshua stopped laughing, sat quietly for a full minute, then answered, "Maybe three.? I think two, but maybe three.? Okay?"? Faith & Adam smiled, hugged Joshua & both told him, "Okay.? Three days."? Faith made us all laugh when, as she & Adam were leaving the room, she said to Joshua in a bright, cheerful voice, "Okay.? Seven days then?? Great!? Thank you!? Good night!"? Then she closed the door before he could yell out, "No!? Not seven!"? LOL ? After they had left the room & the lights were out, Joshua snuggled against me & said, "Mommy, it's really going to be 2 days, but I told them 3 so they would stop asking me."? I hugged him tightly and said, "I understand.? It's okay.? You have been so strong & brave to hang on this long.? You being at their wedding is going to be the best day ever for them.? It's okay if you want to go to heaven 2 days after that, Joshie.? I love you."? He reached backward to hug my neck & I kissed his cheek & he told me, "I love you, too.? Now I need to go to sleep."? And within a few minutes, he was out.You know, it's only in writing this out that I realize how crazy it sounds that we were sitting in the bedroom at 1am, listening to two adults bargaining with a 7 year old child about how many days that child would agree to live after their wedding.? I have NO IDEA if Joshua has any say in when he is going to die. I am writing out the conversations we are having with him because he is so serious about the topic that it is hard to believe he DOESN'T know something... it's easy to believe he and God have been chatting & God (or the angels) told him when he gets to come to heaven & that is what has him in such great spirits these days. I'll say this much ~ no adult in my family will be shocked if Wednesday night turns out to be our last night with Joshua.? We will be wholly & completely devastated, but we won't be surprised because he's been telling all of us what is coming (just like he promised me he would).? And honestly, as sad & heartbroken as we all are going to be on the day he dies, it is really difficult to deny that it is going to be a wonderful day for Joshua because the joy that he exudes when he talks about going to heaven & the fun that he is going to have there is almost palpable.? As much as I want to beg him to stay here, I can't get the words out of my mouth.? I never want to be without him, but something in my heart smiles to see him so happy.? He is not eager to leave us & he is making that clear with the things he is saying, but he is happy about where he is going, and isn't that how a parent wants it to be when their child is heading off somewhere without them ~ to have the child more excited than fearful about their upcoming adventure?? He told me last night, "I will send you rainbow butterflies to remind you that I love you and that I miss you and to tell you, 'You should try it, Mommy!'"? I asked, "Try what?" and he smiled as he answered, "Heaven!? You should try heaven!? You will have to come soon, too!" ? I leaned forward to kiss my little boy's cheek & answered, "Okay.? I will."? Conversations like these are a gift from the Lord to me because one of the things that has filled me with grief is seeing Joshua SO happy about getting to leave.? I felt rejected, as though all of the love that I have for him means nothing & Joshua was thinking, "Yeah, you've been great, but there's something better coming along now, so... see ya, lady!"? Logically, I have known that isn't the truth, but emotionally, it's been a struggle, so having Joshua telling me that he is going to miss me and that he can't wait for me to join him in heaven and that he will need to hold my hand when he goes has been an incredible gift to my heart.? It is further evidence, to me, that God is good in even the hardest of situations and that He cares about me just as much as he cares about Joshua.? He isn't taking Joshua because He wants to destroy me... He isn't taking Joshua away because I'm not good enough at being a mother... He isn't taking my child because He is cruel.? I still don't know why God is taking Joshua, but I now truly believe in my head & feel in my heart that He is trying to help me through it... that He is gently hugging me & saying, "Your little boy isn't leaving because he doesn't want to be with you anymore.... He's just excited to come spend time with me and he knows that you will be with him again soon, so that is why he's not sad about leaving."? I needed to know that... needed that reassurance... and now, because of the many conversations Joshua has been having with me (and other people & family members), I have it.? God is here, every moment, caring about every detail & meeting the needs of every person involved because He loves us all and it doesn't make Him happy to see us hurting.? I know He could just give us a miracle & heal Joshua & then we wouldn't have to hurt anymore, but it seems He has a different plan and even though I don't understand it (at all!!!), I still trust & believe that my God is going to bring beautiful things out of the pain & tears.? Really, He is the only One who can.? In the meantime, I am grateful for the gifts of love & reassurance that are coming from my little boy as he unknowingly helps prepare his family for the time when we will have to let him go.? He is an incredible little person... there aren't words adequate to express how tremendously he will be missed.121 people this Sign My Guestbook | Read Tributes Written April 27, 2013 12:13pm by Kate Parker Posting this on the run for those who like to pray for specific requests.? Here's an odd, but sincere, one ~? please pray for me to be able to carve out enough time to write a full journal entry today.? I want to share what is going on and conversations being had, but with wedding preparations & daily life, it's hard to get a large chunk of time to write.I'm heading out with David & Isaac to do a few errands and then I have to take all the girls for haircuts this afternoon, but I am praying I can sit down to write here after dinner.? Please pray for nothing to thwart that.? Thanks!92 people this Written April 25, 2013 1:25pm by Kate Parker Joshua is having a harder time as of late.? More head pain necessitating more bolus doses of fentanyl and less ability to filter out external stimuli, which results in more pain, as well.Four days until the wedding.? It was going to be on Friday, but a scheduling conflict with the venue forced a change in plans, so Monday is the day, instead.? The home health nurse & I had a long, somber discussion on Tuesday afternoon about what is going to happen and what we can anticipate seeing as Joshua's body continues showing signs of the damage being done inside his head as his brain stem's function worsens.? Things like his organ systems shutting down, his lack of interest in eating or drinking, his increased need for pain medication which will lead to an increase in sedation & the amount of sleeping he does & then the eventual cessation of his breathing ~ either from his brain stem completely ceasing to work or from the sedative effects of super-high doses of pain meds.? I asked about continuing IV fluids once he stops drinking on his own and learned that giving fluids when the body is shutting down actually works against a person because the kidneys can't filter out the fluid & then it seeps into the tissues & can fill up the lungs.? My goal is to keep Joshua comfortable, not to drown him by trying to keep him hydrated, so once my little boy is uninterested in drinking on his own, we won't push IV hydration anymore (he is still receiving TPN at this point, but I don't know how long insurance will approve coverage once the wedding is over ~ I haven't yet heard from the pediatrician about that specific topic).? I realize that may sound cruel, but it's not.? When a person is dying, they naturally stop eating & drinking & they do not experience any distress from that (at least, that is what I'm being told).Anyway... it was a stupendously awful conversation and while I appreciated learning more about what the end could potentially look like, it made me feel sick inside because if nothing surprising happens to slow this process (such as insurance approving a longer term of TPN use), we've probably got only a few weeks left with Joshua & let me tell you, NO amount of preparing for the eventual death of your child can make you actually ready for it to happen. He is telling us he wants to go to heaven two days after the wedding.? I have no idea if that is within his "power" to dictate, but it's what he's saying.? I know what I want (complete miraculous healing & a long life here with his family), but ultimately, my prayer is for God to do what is best for Joshua... whatever that is going to look like... and no matter how much it goes against everything my heart is crying for.? I CAN recognize that heaven is the best place for ALL of us and, as such, instead of wanting to keep Joshua here with us, I should be asking God to take us all THERE to be with Him.? I guess what it comes down to is that I don't want to be separated from my son, and while I'm relieved that his pain & suffering will end when Jesus calls him Home, I am hurting because my pain and the pain of my husband and children and friends who love Joshua is going to continue on.? I am being encouraged to live "in the moment" and to try to not look too far ahead.? I want to assure those who are concerned that I AM doing just that.? When I am doing wedding preparations with Adam & Faith, I am focused on that.? When I am playing a game with David, Sarah & Isaac or making dinner with Megan or watching a video with Emily, I am focused on that activity & enjoying my time with them.? When I am with Charley, talking about our respective days as we spend a few short moments alone, I am focused on him.? And when Joshua is awake, I am laughing & kissing & cuddling & teasing & fetching things & catering to his every whim.? But when he is laying asleep beside me in a darkened room, his rest aided by a hefty dose of fentanyl, and there is nothing else demanding my attention, I think about what is yet to come.? I choose to express a lot of those thoughts here because that's what a journal is for.? It doesn't mean I am consumed by the sadness every moment of the day or that I am sitting, wringing my hands in teary anticipation of the horror that is heading my way.? The fact is, this IS hard.? It IS brutally painful.? It IS awful.? God is so gracious to me, though, and blesses me with periods of time where I get to rest, to laugh, to hug & be hugged by people who care, and to remember that there are still lots of good things going on despite the really bad thing happening with Joshua.? NOTHING is going to make this better, but lots of things can help to make it easier to bear, and God is taking care of me (and the rest of my family members) through it all.? If I have failed to express that adequately, I'm sorry for that. I do want people to know that yes, this is really difficult and I am really sad and I hate that my little boy is dying, but God is with us every step of the way and He is giving me strength to get through each day and bursts of "happy" to go along with the "sad".? 103 people this Sign My Guestbook | Read Tributes Written April 22, 2013 2:22am by Kate Parker It is really challenging being genuinely happy about an event while simultaneously being genuinely sad & apprehensive about another event, especially when the two events are linked and affect every member of a family. Being told, "Try to focus on the happy and don't think about the sad," is not helpful because it's impossible to think about one without thoughts of the other creeping in. My family members & I are able to smile & laugh & enjoy the "highs" (wedding) but the sadness of the "lows" (Joshie) are an everyday event, too.? Every day, I have at least one child come to me with teary eyes, needing a snuggle in my lap and reassurance that even though things aren't going to be "okay," we are going to get through it and yes, God has a plan in what He is allowing to happen even though we don't understand any of it.? 95% of everyone's day is happy and NOT focused on the sadness hanging over our heads, but that 5% is still there and it doesn't matter how much we all try to ignore it... it can't be completely blocked out.? A conversation that took place between Joshua & myself just minutes ago as Adam & Faith sat a few feet away, listening:Me, laying my head on Joshua's leg ~ I love you.Joshua ~ I love you, too, but please get off my leg.Me ~ But I want to love on you!Joshua ~ You can love me in heaven.Me ~ What?Joshua ~ You can love me when we are in heaven.Me ~ But we aren't in heaven yet!Joshua ~ Well, you can love me there.Me ~ We're not going to heaven any time soon, though.Joshua ~ Yes, we are!Me ~ Well, I don't know when we are going.Joshua ~ I will tell you.Me ~ When will you tell me? The day before or like right when it's time to go? Do I get any warning?Joshua ~ I will tell you when it is time. I will say, "Come on, Mommy. It's time to go to heaven now."Me, swallowing hard ~ Okay, Baby. That sounds perfect. You can tell me when it's time to go and I'll love you in heaven forever.Joshua ~ Good. Then he leaned forward to hug my neck & gave me a kiss.Something else he told Faith & me tonight is that his skin isn't gray ~ it's purple because he drinks so much grape juice (that's all he drinks now because it's the only beverage he can still taste enough to enjoy). He laughed as he told us we could call him "Grapey". Happy... sad... happy... sad.... welcome to my world, where everyone tries to focus on the merry & lighthearted even when the somber & painful slaps us across the face.? Like I said, it's a hard place to be, but I know it could be a lot worse and I'm well aware that one day (maybe soon if Joshua gets his way), it will be. 83 people this Sign My Guestbook | Read Tributes Written April 18, 2013 3:30am by Kate Parker Joshua has been reunited with his Adam & Faith and, as you can see in this picture, all is good in his world again.? When Adam & Faith were coming off the plane, Joshua held a "We missed you!" sign in front of his face, completely convinced that they would not recognize him behind the sign.? They walked over to him & greeted Emily, at which point Joshua dropped the sign & yelled, "BOO!"? Everyone who heard him laughed.? Adam bent down & Joshie wrapped his arms around his brother's neck, hugging tight.? Seeing the two of them reunited was all it took to start both Faith & me crying.? It was such a sweet, emotional moment and we were overwhelmed by it (in a good way).The infusion nurse is coming over tomorrow to increase the rate of fentanyl that Joshua receives via continuous IV drip and to increase the bolus dose amount that he can get every hour, if needed.? She'll also de-access him, let me give him a bath and then re-access his port so we can restart his TPN, lipids & pain medication. ? She will also draw labs because Monday's labs showed Joshua's liver function was off & the pediatrician isn't comfortable waiting until next Monday (the scheduled lab day) to re-check those values. The home health nurse will be over in the afternoon to do her weekly assessment, as well, so we'll have a busy few hours. It'll be good to get Joshua more medication every hour & ensure he remains comfortable at all times.It's uber-late, so I'll sign off for now.? The wedding is next week & we've got lots of final preparations to make.? I'll share pictures of the "da ween dye" (he is actually the best man who *also* gets to hold the rings) after the special day.? Tonight, Adam led us in a time of prayer as we thanked God for bringing Faith & him safely home and for letting us keep Joshua here to be part of their wedding.? It's an answer to many prayers and we all are so happy that Joshua will be physically present and by his brother's side on the day Adam marries the love of his life.? It's a huge blessing & we all recognize that & thank God for the gift of extra time that He's given us with Joshua.101 people this Sign My Guestbook | Read Tributes Written April 17, 2013 3:06am by Kate Parker After an unexpected snafu that prevented them from flying this past weekend, Adam & Faith are now en route to Los Angeles, where they'll have a layover before flying the last leg of their journey home.? Joshua will be one of the kids who accompany me tomorrow night to pick up our weary travelers at the airport.? When I told Joshua that he would see his big brother tomorrow, his response was, "Good. Then we can do the wedding and then I can go to heaven." That led to me asking how he can possibly know he will go to heaven soon after the wedding and him answering that he will just die... that he will stop breathing and that will be it.? He also informed me that "it feels sort of weird when that happens," (stops breathing) & I told him that maybe we can just go to sleep one night and wake up in heaven so he doesn't have to experience that weird feeling.? He agreed that would be a good thing. He has been subdued lately, which I think is due to the past few days being tougher than usual for him with regards to headaches & apnea, but I am still hoping for some smiles and a happy boy when he is reunited with Adam & Faith.He has made his home infusion nurses teary-eyed lately with his announcing that soon, they won't have to poke him ever again because he is going to heaven, where he won't need to be poked anymore.? He's also been reciting a litany of things he will be able to do in heaven ~ things he has either never been able to do or has lost the ability to do.? Riding a bike tops the list, followed by running, jumping and playing at the park for a long time.? He is looking forward to not having a port or a g-tube or shunts or needing medicine or IV food.? He can't wait to walk again & to never have any pain. As much as we (my family) are going to miss Joshie, we want all of those things for him, too.? We don't want him to die, but we also don't want him to suffer.? A friend who has a son with Duchenne Muscular Dystrophy ~ a condition that is incurable ~ advised me to "follow my son".? In other words, let Joshua dictate the steps we take as his earthly journey comes to an end.? It struck me as wise counsel & I intend to follow it.? As long as Joshua wants to stay with us, I will do everything I can to make his days happy & comfortable, but when my little boy has had enough and tells me it is time to go to heaven, I will, with tears freely flowing & heart breaking, open my hands and give him back to God. He deserves that last gift from his Mommy and I only hope I can be half as brave in that moment as my Joshiebear has been his entire life. 107 people this Sign My Guestbook | Read Tributes Written April 11, 2013 2:42am by Kate Parker Joshua has been talking today of angels, God and how he can't wait to go to heaven so he won't be poked ever again.? I told him his big brother & Faith would be home soon (this weekend) and the response was, "Good!? Then we can do the wedding and then I can go to heaven!"He's so ready to go.? If only the rest of the family felt the same way.? We don't, though.? At all.? Oh sure, we recognize that heaven will be wonderful for Joshua since he will be whole & healthy & perfect & able to do all the things he can't do here, but the fact remains that we will be missing a large piece of our hearts with no idea when we will get to see him again & that is not something we are looking forward to.? As such, we won't ever be ready.? It isn't going to happen.? We're no longer even trying to pretend it's possible.? We're glad that God has prepared Joshua's heart so thoroughly, though, and that our little boy is not anxious or fearful about what lies ahead.? As awful as the destination we are being forced to walk toward is, we can appreciate what the Lord is doing for Joshua & our family on the journey.? On a happier note, Joshua wanted to make cookies tonight at 11:30pm, so Megan & I carried him & his pumps & bags downstairs and got him situated so that he could help.? He lasted about 30 minutes before asking to be taken back to his room, but there was joy in having him in the kitchen with us for that brief time, chattering & giggling as he touched the raw cookie dough and helped "smoosh" it down.? I'm so thankful for the bursts of happy that God blesses us with each day.? Those moments makes it more difficult to believe that our time with Joshie could be close to ending, but gives us happy memories to treasure & I thank the Lord for every one.93 people this Sign My Guestbook | Read Tributes Written April 9, 2013 9:14pm by Kate Parker In the past 24 hours, two friends on Facebook have shared articles that are so full of helpful & useful information that I want to share them here.? I hope you will take a few minutes to click each link. They're short articles, but truly, they're both worth reading.Confronting the Lie: God Won't Give You More Than You Can Handle Not To Say the Wrong Thing has been a good day for Joshua.? He woke up a little after 2pm and watched a movie (Rise of the Guardians) with Isaac.? His home health nurse came over and was here for a couple of hours, which was fun (really!).? Now Joshie is playing Super Mario Bros on the Wii while Emily works on a cross-stitch next to him and I am sitting on Megan's bed.? Megan took the other kids out for a bike ride & Bethany is sleeping, so the house is quiet, which is nice.? Low-key days like today are enjoyable & a welcome break.? :)?72 people this Written April 9, 2013 1:43am by Kate Parker The past two days have been pretty good for Joshua.? He has been happy in his room and the kids have had fun spending one-on-one time with their little brother.? They watch movies together, play with legos or bionicles, enjoy games on the Wii, and chat about things like Jesus, the fun things Joshua wants to do in heaven, what they think Joshua's room in heaven will look like, and when he thinks he will be going there.? He is so *happy* when he talks about heaven now and we can see him getting progressively more excited as the day of departure gets closer.? Everyone is hearing Joshua speak freely about heaven on a daily basis.? He doesn't always initiate the conversation, but he isn't reticent about answering most questions.? The only one he refuses to answer is, "When are you going to heaven?"? He has told us that he knows when he is going but follows up that he isn't supposed to tell us yet.? I don't know if God has gifted Joshua with a specific knowledge or not, but I do know my little guy is steadfast in his belief that he knows and his answer never wavers no matter who asks the question.? Another subject Joshua has a strong opinion about is being fed by TPN.? He has said repeatedly that he doesn't want to be fed by IV because he wants to go to heaven.? While we were in the hospital, he told his nurses, pediatrician and me that he didn't want food in his IV.? He would not let it go and I finally asked him if he knew what would happen if he did not get fed through his port.? He answered very matter-of-factly, "I'll just go to heaven!"? I agreed that yep, that is what would happen and he told me he was okay with that; that's where he wants to go.? I asked, "What about the wedding?? Don't you want to see Adam & Faith?"? His response was, "Well yeah, but they will know where I am."? He told this to the pediatrician and me and then made a similar comment to a nurse who asked him if he was excited about the upcoming wedding. ? I'll admit that I struggled with the decision to put Joshua on TPN.? I have tried to respect his wishes since I learned his condition would end his life way too young and to start TPN would go directly against what he was saying he wanted, but I definitely wasn't okay with NOT doing anything & I desperately did not want to have to call Adam and Faith in the Philippines & tell them that Joshua had died, so I wanted to do whatever it took to keep him alive so that Adam, especially, could see him again.? I spoke with Dr. G, the palliative care doctor, and she told me that in her experience, it was rare for a child as cognitively-young as Joshua is to be able to articulate a goal as clearly as he has been doing for the past year ~ that of being the ring guy for his brother's wedding.? She said that it reminded her of a 15 year old young man who had been dying of cancer & whose final wish was to attend his prom.? Everyone worked to do all they could to make that wish come true for that boy.? She said that being "da ween dye" was Joshua's wish, that she has heard about him articulating that desire very specifically for months, and that, as such, she believes we ~ his team ~ should do all we can to help him reach that goal before he dies.? As such, TPN was an appropriate treatment to use for now, regardless of what Joshua might think of it. That conversation helped me a lot, as it took away the guilt that I was pushing to prolong my child's life when he had made it clear he was ready to be done.? The truth is that Joshua is getting tired and he does seem very ready to go to heaven, but he also does want to be part of Adam & Faith's wedding first and no matter how wise he may be about spiritual issues, he is still just a little boy and sometimes needs his mom to make decisions that are in his best interest, even if it's not what he says he wants.? Most kids will protest having to take nasty-tasting medicine even though they truly do want to feel better.? I am approaching TPN the same way.? I believe Joshua sincerely doesn't want it, but in order to live, he needs to have it.? That is pretty much what I told him and he capitulated momentarily, then countered, "Okay, but only until after the wedding.? Then I don't want the IV food anymore because I want to go to heaven."? I didn't agree or disagree with that statement.? I simply said we would talk about it after the wedding.? I had already been told the TPN would be a temporary thing, but I didn't know how long it had been approved for use. I still don't know because I haven't specifically asked... I know it would be very difficult for me to say, "Okay, the wedding is over, so let's stop feeding him via this route," if TPN was still approved by insurance for use, so at this moment, today, I don't want to know when the end date is.? I'll wait until the big talk with Dr. S at the beginning of May to face it.Since I am laying it all out here, I'll confess that I am a total weenie and, as such, I am praying that God takes this decision out of my hands.? If Joshua is truly ready to go to heaven after the wedding, then I would prefer to have him stop breathing in his sleep one night because his brain stem stopped functioning than to have him taken off TPN and slowly die from his systems shutting down due to dehydration/lack of calories. I'm fairly confident that the death that would come after taking him off TPN would not be awful because I watched Joshua not eat anything and not drink more than a couple ounces per day for 4 days while in the hospital and he was perfectly happy & content.? He was getting normal saline in his IV, not dextrose or any other calories, and he was fine.? Dr. S explained to me that as a person gets closer to death, they stop eating and drinking as a natural part of the process and it is not painful or distressing to them, so if Joshua did progress that way, I would not have to worry that he was miserable.? If we have to go the "stop TPN" route, we will still feed him and let him drink to his comfort level and he will be kept pain-free with fentanyl.? No one is going to refuse him oral sustenance.? But my heart's desire is that we don't have to go that route.? It is my prayer that the only thing that would take my son's life is the brain stem dysfunction that we have been preparing for and not something "fixable" like dehydration or an infection.? I don't want to have to make the decision to do something that will ultimately lead to his death and I don't want the loss of TPN to be what triggers the final downhill spiral.? I realize it's not about me, but about keeping Joshua comfortable and happy for as long as possible, but like I said, I'm just laying it all out here and sharing some of the thoughts I'm wrestling with.? All along, I have tried to make decisions that are best for Joshua, and I will continue doing so.? That doesn't mean I don't contemplate how each choice will impact my life and my other children's lives, especially once my little boy is gone and I am left to remember every step I took with him and wonder if I could have done something different to get a better outcome.? The closer he gets to leaving for heaven, the more weight each decision carries (emotionally, if not literally).? There are no do-overs here, so I really need to get it right, but how can I manage that when there won't be a good outcome either way?? It is this question that leads me to pray for God to make the decision. That way, instead of forever questioning my imperfect self, I could trust the One who is incapable of making a mistake and know that whichever path we wind up taking is the best one for Joshua.? That would bring some peace to this no-win, hard situation.? 87 people this Sign My Guestbook | Read Tributes Written April 6, 2013 4:49pm by Kate Parker The past couple of days have been hard.? Bringing Joshua home stressed his little system a lot. His body displayed the stress of being moved (hospital to car to couch) with large purple circles appearing under his eyes & profuse sweating (picture beads of sweat above his lip & rolling down his face & soaking his hair & shirt) even though his skin was cool. He needed breakthrough medication (fentanyl) within 10 minutes of leaving the hospital and several more times that evening after we got home.The kids were SO happy to have Joshua home and were just perfect with how quietly they greeted him, being careful to not overwhelm him.? Unfortunately, as the hours wore on through the night, we realized that despite the family room being kept dimly lit and the kids' efforts to speak quietly, Joshua just couldn't handle the sensory input.? He requested pain medicine frequently and we couldn't give it to him each time because the fentanyl pump he's on (a PCA) gives a set amount each hour and then allows a breakthrough dose at set times.? Joshua came home with his basal rate set at 62.5mcg per hour and a breakthrough dose of 125mcg that could be given once every 2 hours.? We can push the "dose" button to try and deliver more medication as many times as Joshua requests it, but he won't get any fentanyl until that 2 hour mark is reached.? I emailed Dr. S (ped) to let her know what was happening & she emailed back that she would talk to the infusion nurse & instruct her to increase the basal rate of the PCA to 75mcg/hr and to allow breakthrough doses of 125mcg every hour.? The next day (yesterday), the infusion nurse came to my home at noon.? She deaccessed Joshua's port, which allowed Megan & me to give him a full-immersion bath and wash his hair (yea!? I love having him smell like himself again after 2 weeks in the hospital).? After he was clean & dry, the nurse reaccessed his port and drew labs.? Then she oversaw my mixing of the additives (like vitamins) that get put into the bag of TPN each day & the preparation of the TPN & setting up the pumps & then, finally, hooking up the fresh TPN to Joshua's central line.? Good news there?? I did it all correctly.? :)? After the TPN, lipids & fentanyl were all running again, the nurse did her assessment of Joshie (weight, blood pressure, temperature, etc) and I poked his toe to get a capillary blood glucose reading (I do that 3 times per day, using his toes since he doesn't have sensation in his feet & therefore the pokes don't hurt).? Finally, we were done, just as the home health nurse was arriving at the house!? The infusion nurse left & the home health nurse sat down to have me sign a bunch of paperwork and then to go over Joshua's history so that she would have an understanding of how he got to where he currently is.? She, too, had to do an assessment of Joshua, but most of her visit was spent talking privately with me.? Home health will transition to hospice once Joshua is removed from TPN.? What?? You're wondering why we would take him off TPN?? Oh, that would be because insurance is allowing the TPN as a temporary way to extend Joshua's life for the purpose of attending his brother's wedding.? It is extremely expensive ~ over $400 a day ~ and insurance companies don't like to pay $12,000+ per month to feed a child who is ready to go to heaven.? So... we have TPN on a "trial" basis and on May 1st (or thereabouts), Charley & I will be sitting down with Dr. S to discuss our options & make decisions.? One decision that has already been made, though, is to transition Joshua to hospice through the same home health company we are using right now (operated by the hospital, not the organization we tried ~ and had a miserable experience with ~ 1.5 years ago).? Dr. S recommended doing that & I agreed with her that it would be a good step to take once Joshie is not getting TPN anymore.As of yesterday, Joshua's weight was up another 2 pounds in the past 2 days. The pharmacist is working to cut calories even more and get this under control (he's gained 8 pounds in the past week). We haven't been able to get him to stand fully upright & he hasn't been able to walk at all since being discharged, even with assistance. He still prefers to lay down versus sitting up.? Last night, Megan & I (with some help from Emily) rearranged things to make a "quiet room" for Joshua upstairs in his bedroom. One of the tv's & the Wii are now in there so he can stay where it is quiet and we can let the kids speak with normal volume & play downstairs & open the curtains without causing distress for Joshie. We'll let the kids play with Joshua as he is able to tolerate it (probably just one or two kids up there at a time) and he will never be alone when he's awake. Dr. S called it "visiting hours" and that seems to be what Joshua needs at this point ~ a place where he can be shielded from too much sensory input because his brain can't filter it effectively anymore (and the end result is a lot of pain & needing extra fentanyl).My heart was really hurting last night.? I was glad we're home where Joshua belongs, but so sad at how things are declining (and how fast the changes are happening).? Today, Joshie woke in the afternoon and never asked to come downstairs.? He immediately wanted to play a Wii game with Emily & she was happy to comply.? Today, he is happy like he was in the hospital. I asked if his head hurt and he answered, "Nope! Nothing hurts and it's not going to hurt now that I am in my cozy, cozy room!"? That was confirmation for the adults in the house that the "quiet room" was the right thing to do. It's about making Joshua happy & comfortable even when what that takes to accomplish is painful for the rest of us (having to take turns being with him & having to keep him upstairs, separated from the main events of the household).? Today, my prayer has been this:? Thank you, God, for making a way for Joshua to smile again through having a "quiet room". Thank you for his brothers & sisters having a love & understanding of their baby brother that enables them to do hard things for his benefit. Thank you for an oldest daughter's unselfish heart that leads her to share her bedroom for the sake of her brother's comfort. Thank you for Your wisdom, Lord, in not bringing Adam & Faith home today when they are both contagious with strep throat & feeling awful & would have been miserable traveling. Thank you for protecting not only the medically-fragile kids in this house, but all of the people they would have exposed on the flights home. I know You will bring them home in Your perfect time & I thank you for that, Lord (though I do pray that will be soon). Thank you for this time with Joshua... for extra weeks of life through the use of TPN to sustain him. Thank you for making a way for that to be approved by insurance despite the arguments put forth. Thank you, God, for Your loving care that answers prayers, even the unspoken ones.God is good, even in the hard places.? And today, I have my little boy here with me to hug & kiss & spend time with.? I am thankful for every moment we have together.108 people this Sign My Guestbook | Read Tributes Written April 4, 2013 2:05pm by Kate Parker We are going home today.? Joshua's lab results, while still not great, have been deemed stable enough to allow further tweaking of his TPN formulation to be done while we are at home.? That is a huge relief!? Last night, I asked him if he is excited to go home.? He answered, "Sort of.? I sort of want to stay here."? When asked why, he told Emily & me, "It's quiet here."? While you probably laugh at that, thinking that in a house with 8 kids, the noise level is high and things are chaotic, that isn't actually accurate.? I mean, yes, my home is noisier than that of a family with just 4 kids, but it's not like everyone is yelling all the time, and people routinely comment on how organized and relaxed our home is (I guess people assume lots of kids = constant chaos & are then surprised to find that's not the case when they spend time with us).? The reason Joshua prefers the hospital atmosphere is that there's not a lot of stimulation, so he doesn't get sensory overload.? As his brain stem has struggled more & more, his ability to filter out noise & competing sensory input has gotten progressively worse.? As such, Joshua prefers quiet, slow-moving, not-a-lot-going-on environments.? A hospital room (with the door kept closed) is pretty ideal for him now.? Unfortunately, his family isn't around & he does miss everyone & he does not want to die in a hospital room, so staying in the hospital isn't an option.? We will go back to keeping things as calm & quiet as possible when Joshie is awake and downstairs.? If he prefers to stay in his room, we'll move things to accommodate that.? Whatever he needs, we'll work it out.? What matters is that he's comfortable and at home with us.Someone from the home health company will be coming to the hospital in about an hour to train me on how to use their pumps & how to set up the tubing for everything for Joshua's TPN & lipids.? I will be fixing TPN each day as part of the new routine.? Since Joshua has been on TPN before, I am familiar with the process involved, but I need to learn how the company we'll be working with does things and how their pumps work and how they want me to be setting up the tubing and attachments and whatnot.? Joshua was only on 1 pump before; now he'll be using 3, so even though I have an idea how to do this, there will be some differences & new stuff to learn.? The training session will teach me what I need to know.After training is over and Joshua wakes up, I'll sign his discharge paperwork and we'll head home (after a quick stop at the pharmacy to pick up another kiddo's medication).? Megan is having a talk with the kids there about the need to not overwhelm Joshua with their excitement, so I anticipate a wonderful homecoming.? I am SO looking forward to being back home with everyone and I am hopeful that the next few weeks will be good ones for my family.92 people this Written April 3, 2013 12:33pm by Kate Parker Joshua's labs are whacked out today. High phosphorus, low white cells and platelets, low protein (STILL ~ it is still at the same level as when we came in and he hadn't been eating then... TPN should be taking care of that), etc. I'm waiting to hear from Dr. S & the pharmacist. The nurse said there is no way he's getting out today and she'd be surprised if it happens tomorrow. :( 55 people this Sign My Guestbook | Read Tributes Written April 3, 2013 12:05am by Kate Parker This update has to be short because the internet at the hospital has been out and is now only sporadically connecting.? Joshua is doing okay and aside from a mishap with his TPN formula (that was rectified today) and some extended periods of apnea, things are all right.? I am anticipating his being discharged from the hospital on Thursday as long as his labs look all right.I will update again when I have a more-solid internet connection.? Thank you for your continued prayers for Joshua.68 people this Sign My Guestbook | Read Tributes Written March 31, 2013 4:19pm by Kate Parker While Joshua was asleep this morning, I "hid" plastic eggs (with candy inside) around his hospital room. When he woke up, I gave him a laser pointer so he could shine the red light on each egg as he "found" it and then Emily fetched the egg & gave it to him.? He would investigate the contents of each egg with glee and then resume the search for more.? It was delightful listening to his commentary & seeing the joy on his face as he played the game. Dr. S came by and hung out with us for a bit, playing with Joshua and enjoying how well he is doing. Joshie has been passing out candy to all of the nurses (he had a special little gift for Dr. S, too) and telling them, "Happy Easter!"? He's been popping bubbles as I blow them & having fun with glow sticks, too. I love seeing him happy and despite the less-than-ideal surroundings & our preference to be with our entire family to celebrate Easter, Emily, Joshua & I are having a good day.93 people this Written March 31, 2013 12:38am by Kate Parker Joshua had a REALLY good day today. He sat up multiple times for 30+ minutes each time & he did not need breakthrough pain medication. He did have to lay down when his head started bothering him, but laying down was enough to make him comfortable again. He has perked up and is looking so much better. TPN agrees with him at this point in time, which is such a HUGE relief! A week ago, I was not questioning the doctors' saying we are looking at weeks versus months now (for Joshua to live). I agreed that he appeared to be very close to death. Now, however, I am feeling like he is more stable and, as such, it is harder to imagine him dying very soon. Time will tell, of course, but for now, I am thankful and happy to have my smiling, giggly little boy back.94 people this Sign My Guestbook | Read Tributes Written March 30, 2013 12:21am by Kate Parker Today was calm & content.? Joshua did not require any breakthrough pain medication and he was in good spirits all day.? He is still not sitting up for more than a few minutes at a time, but it's okay; he's happy and that's all that matters in the grand scheme of things.Charley came & brought Isaac for a long visit this afternoon and Joshua was so happy to spend time with his best friend.? Isaac laid in bed with his brother & they played games on the iPad together.? It was super-sweet and made me smile to see the two of them having fun.? Charley told Joshua that when he comes home, he & the other little kids can plant jelly beans and grow candy.? Obviously, my 9 and 11 year olds know how plants grow, but they will go along with the game for their brother's enjoyment.? Joshua was enchanted by the idea and had fun telling his dad what kinds of candy he wants to grow so that Charley would know what colors of jelly bean seeds to get.?? He'll plant the jelly beans and then later that night, when he's asleep, Charley will switch out the jelly beans and place plastic eggs with candy inside where the jelly beans were & plant a sucker on top so Joshua knows where to dig (ala uprooting a potato).? It should be fun! I learned today that after Joshua is discharged, we will be working with a home health & home infusion company affiliated with the hospital to provide his TPN each week & to take care of his PCA pump.? Everything is being set up and from the sound of it, everyone is on-board with doing what they can to meet Joshua's needs in the best possible manner, which is great.? We'll have 24 hour access to nurses and they will come to our home (I don't know all the details yet, such as how often we'll have a nurse visit) to take care of things like filling the PCA with fentanyl cartridges.? I am very relieved to have this piece of the puzzle falling into place.? The nurses won't be coming over for hours at a time to help with general care of Joshua.? They will come to do specific tasks (like dressing changes) and after finishing them, will leave again.? They won't be there to allow me to take a nap or to give Joshua a bath or give his meds or other things like that.? That is a different type of nursing care and is not what the home health and home infusion companies provide.? I'm fine with it because we don't need that kind of nursing, but wanted to clarify for anyone reading who might wonder.At this point, Joshua is stable and doing well enough to go home, but he has 3 more days of advancing his TPN before he'll be at 100% (they start out giving him 20% of his calories and fluids and then advance it another 20% each day until it reaches 100% of his nutrition being given intravenously) and then, once that is where it needs to be, Dr. S said we'll switch Joshua to a PCA for his fentanyl (right now he's getting a continuous IV drip) and then it will take a day or two to get the dosages for his basal & rescue rates tweaked (he will have an amount he gets every hour and a button he can push to get a pre-measured dose of extra medication several times per hour, if needed).? THEN, once that is all figured out, Dr. S can write the final orders for everything and give them to the discharge planner, who will make sure all of the equipment we'll need is delivered to our home, which can take another day or two.? I was told that it will probably be later next week when Joshua finally gets the go-ahead to leave the hospital, which means we'll be getting out of here around the same time Adam & Faith fly home, so that will be good timing.? While I'd like to get out of here sooner, I agree with the team that it's more important to make absolutely sure that everything is set up & fully organized, with all the glitches we can think of worked out BEFORE we take Joshua home so that, hopefully, the transition between hospital and home will be seamless.? 69 people this Sign My Guestbook | Read Tributes Written March 28, 2013 9:34pm by Kate Parker Today was much better.? Last night, after having one of the night nurses tell me that Joshua didn't need any pain medication because "a child playing on an iPad is obviously doing okay & is content" and "we don't like to overmedicate any child," (which made me seriously want to throttle her), I sent Dr. S an email detailing everything that had happened and asking her to please do something to fix the problem with the breakthrough dosing and frequency.? Three minutes later ~ LITERALLY ~ a nurse was peeking his head in our room to say Dr. S had just called & wanted him to tell me she had gotten my email and would be responding, but in the meantime, he was to increase the basal rate of Joshua's fentanyl drip by 25% and from now on, Joshua can get breakthrough doses on request and regardless of the nurses' assessment.? Ha!? I could have kissed Dr. S!? Her email arrived in my inbox 10 minutes later.? She apologized for what had happened and said she wished the nurses had told her about Joshua's pain when she had spoken with them repeatedly throughout the day.? I quickly shot back an email response telling her that I had specifically requested two nurses call her and that one of them had told me she (Dr. S) had refused to change the frequency of Joshua's breakthrough medication doses.? Dr. S didn't respond to me via email again, but I am fairly sure she had words for the nurses based on the conversation she & I had when she came to see Joshua this morning.? I have the cell & home numbers of the nursing clinical coordinator and will chat with her about this situation, too.? If nothing else, the pediatric nurses (some of them, at least) need to be educated about the differences in manifestation and reaction to pain in a typical kid and one with chronic pain.? They also need to be reminded that parents know their kids better than nurses do and it behooves them to listen to the parents.? Oh, and perhaps a little reminder that lying to a parent about what a doctor supposedly said is REALLY stupid, especially when that parent isn't afraid to email the doctor (or call her) to get her child what he needs & the truth of what was or was not said will be revealed.? Yeah, I was steamed.? But as a result of the wonderful Dr. S's changes, Joshua's pain was well-controlled today and he had a good day, which makes yesterday's fiascos easier to forgive. The definition of a "good day" is different now. A good day for Joshua is one where his head doesn't hurt excessively, where he enjoys playing some games on his iPad & watching a few episodes of SpongeBob and Phineas & Ferb, where he smiles and maybe even giggles.? It's one where he chatters and kicks his legs up in the air as he lays on his back.? It's strikingly different than even just a few weeks ago.? I was happy that today was good, though.? I'll take it and thank God for it.? Joshie did have a few disappointing things pop up, though.? Any time he drank anything ~ and he only drinks an ounce or two at a time now ~ he immediately said his belly hurt & requested that I drain it out through his g-tube.? He also seems to be losing his sense of taste.? He will put a bite of something in his mouth, dejectedly tell me that he can't taste it, and ask if I can fix it.? Sadness overload for this mom.? Despite those setbacks, though, it really was a good day.? TPN was started late last night. It is a complicated (to me) set-up! He has 3 lines coming from 3 pumps that all feed into 1 central line, with an extra "pigtail" port for administration of IV medications. One of my sweet friends offered to to make some line wraps (a fabric tube with elastic at both ends) to keep all of the cords from tangling and getting wrapped around things (like wheelchair wheels) or tugged on by siblings or puppy paws (thank you, Mel!).? I know that I'll get used to the new set-up, but honestly, because this is unlike anything I've dealt with before, it seems pretty intimidating right now.? Thankfully, I've got several days to get more familiar with things before he gets discharged and someone from the home health company will come here before we leave to make sure I know how to set everything up on my own.? I'm also fortunate to have a great friend whose son is TPN-dependent and she has been a wealth of information & help for me today, hooking me up with the names of products that will make dressing changes easier & teaching me (from 3000 miles away, via phone) how to secure the lines so they won't hurt Joshua if they get tugged on and how to transport/manage 3 pumps & bags of fluid when I have to do things like put Joshua in his car seat and then transfer to his wheelchair.? I am so very thankful for God's provision of friends who have "been there, done that" experience they are willing to share with me in order to make this transition to a "new normal" easier.? 81 people this Written March 27, 2013 6:14pm by Kate Parker As you can see, the donut that Aunt Carolyn brought Joshua is huge!? It is wider than his face and almost as long.? If you look in the "photos" section here, I've added a second picture since I can attach only 1 picture per journal entry. Joshua was thrilled to have his wish for a donut bigger than his head granted.? Thank you, Carolyn!? He ate a small bit of it and thoroughly enjoyed the treat (the rest is put away for when he wants more later).Joshua has been awake for almost 8 hours and is just now dozing off for a nap.? He has gotten 3 breakthrough doses of pain medication today & has asked twice for more medicine but been told it's too soon for more.? I'll be chatting with the pediatrician tonight about increasing the basal dose on his pump because I'm not okay with Joshua having to "deal" with pain for hours when someone thinks he can get meds only every 4 hours At this stage of things, him hurting when there is plenty of medication that we could give him to knock the pain out is unacceptable to me.? Whenever he's been in PICU, he was able to have fentanyl every hour, if needed, so this whole "he has to wait 4 hours" is ridiculous.? I'm confident it's something that will be straightened out once I can contact Joshua's doctor.? As part of the process for formulating his TPN, Joshua was weighed today.? On Friday, when he was admitted, he weighed 27.4 kg, or 60.28 pounds.? Today, he weighs 21.7 kg, or 47.74 pounds.? That is a 12.54 pound weight loss in 5 days, which gives a person a fairly clear understanding of how little Joshua eats by mouth (since he hasn't gotten fed more than a few ounces of formula in the past 5 days).? I'm glad we're starting TPN tonight.? I'm hoping that once he begins getting calories in a way that doesn't cause distress for his belly, Joshua will maybe have more energy and perk up and surprise everyone.After reading a comment left here, I asked the nurse if fentanyl & TPN can be safely run simultaneously in the same line since Joshua has just a single lumen central venous catheter and was informed that the pharmacist checked into that question already & found that if the TPN is formulated in a specific way, then it it compatible with fentanyl.? As such, running both TPN and fentanyl at the same time in his central line will be fine. The social worker came by and told me it sounds like the home health care company will be able to manage the PCA pump for Joshua, so I am cautiously optimistic (waiting to get confirmation that it's a done deal).? I asked, "So we might be able to get out of here by the end of the week?" and she answered that she thought Dr. S was talking more like the beginning of next week.? I'm happy that we're moving in the direction toward getting Joshua home and am thinking that having a few extra days to make sure his fentanyl dosage is adequate for pain control even when he's moving around or sitting up is probably going to work in our favor.? 85 people this Sign My Guestbook | Read Tributes Written March 27, 2013 11:52am by Kate Parker Joshua woke at 8:40am, happy & smiling.? "Good morning," he said with a smile, as though it was not insanely unusual for him to be conscious at that hour.? Dr. S came in at 9:20 and was shocked (happily so) to hear Joshua singing along to a commercial.? When asked how he was doing, the answer was, "Nothing hurts!? I feel GREAT!"? He hasn't wanted to sit up yet today, but Dr. S & I are happy with how good he's feeling while he lays down.A friend brought Joshua a HUGE donut, saying that she has been thinking about it ever since he said he wanted a donut as big as his head.? He didn't want to eat it yet, but when he does, I am soooo getting a picture (which I will share)!He has played some of our silly games for the first time in a long time, such as the one where we rub noses as we move our heads back and forth while saying 'nosy nosy nosy" and giggling.? He has hugged me and told me I "pell dood" (smell good) and asked why.? When I answered that I put on the perfume that I know he likes, he smiled & said, "Dood!"? ?Loving that the day has started this way.? Hoping & praying it continues.Dr. S said the plan is to start TPN at 5pm if the pharmacist has it ready.? If not, we'll start tomorrow.? Today should bring word about the PCA pump & home health care (and whether it's a go or not), too.? I'll update after I know something.? 83 people this Sign My Guestbook | Read Tributes Written March 26, 2013 10:55pm by Kate Parker Today has been pretty low-key. I was blessed to have a long talk (and cry) with one of my friends while both Emily & Joshua slept.? Then another friend stopped by just to give me a hug, which was an answer to a prayer of my heart because I had told God this morning that I really needed a hug & someone to share my sadness.? It was beautiful to me that God cares about even the tiniest details.? After spending time with my two friends, I felt much, *much* better and able to cope with the day ahead.Joshua slept in & had a short burst of energy when he woke up.? He was full of giggles as I repeatedly kissed his feet and teased him about them being stinky and the sound of his laughter filled my heart with joy.? Then Charley brought the kids to visit and that was another ray of sunshine in my day.? It was good for everyone to spend time together after 4 days apart and we were able to get Joshua into his wheelchair and outside for a short trip to the hospital garden where he & the other kids fed the fish in one of the ponds, which everyone enjoyed.? Afterward, Joshua played on his iPad for a little while and then he went to sleep around 5pm.? Dr. S was busy making calls to the pharmacist & nutritionist to get TPN set up for Joshua.? He'll have labs drawn tomorrow morning (from his port ~ painless for him & they'll draw the blood while he sleeps) to help them calculate the formula Joshua will get for his calories & fluids through his central line.? She came by to talk this morning & again this evening to ensure we were on the same page regarding every choice being made (we are) and to let me know that if the home health care company will accept Joshua as a client and if insurance will cover a few weeks of TPN, then we should be able to take him home in 3-4 days.? One of the hospital social workers who was working with the discharge planner to get things set up came by to talk after Dr. S suggested to her that it might be helpful.? I had not thought it would offer any benefit to sit down with the social worker, so I was surprised by how good it felt to be able to "unload" to a nonjudgmental, impartial stranger who was there to help me.? As we hugged after our talk, I was surprised by how much lighter I felt.? She told me I need to make time for the meltdowns.? I told her I had had one just this morning while I talked on the phone with a friend and she smiled and said, "Good!"? She's going to come back tomorrow morning to talk some more.This evening, another sweet friend brought Emily & me dinner from a Mexican restaurant in town.? Chicken enchiladas were a wonderful treat and a welcome break from hospital fare.? Overall, it was a day of rest for Joshua & me as people worked behind the scenes to get things set up so that my little guy can go home.? I am thankful for the mercies God showered me with today because I needed the support more than I realized.? He reminded me of His promise to surround me with a cloud of witnesses.? It's a promise I am most grateful for.Joshua has just woken up after his 5.5 hour nap, so I will wrap this up for the night.? Thank you to everyone who is leaving comments and caring so much about Joshua & me (and the rest of my family).? Your words bolster my spirits & help me to feel much less alone.89 people this Written March 25, 2013 11:24pm by Kate Parker Today dealt a tough blow.? Joshua's stomach pain & head pain increased as the hours of feeding him via his g-tube went by.? After multiple doses of breakthrough fentanyl were needed & Joshua was still complaining of his head hurting badly, the doctor stopped his feeds, increased his IV fluids & we all just kind of agreed that things are not improving.I received a call from the palliative care doctor & nurse at Emanuel and though it was a productive discussion, it was emotionally hard.? Tomorrow, they will be talking with Dr. S about putting Joshua on a short trial of TPN, but Dr. G was clear that even if Joshua is on TPN, he still may not live 3 more weeks.? She is also going to talk to Dr. S about putting Joshua back on hospice so that we can get him on a fentanyl PCA pump at home.? His gut is not absorbing medications efficiently anymore, which means Joshua now needs IV pain meds to keep him from hurting.? As things progress, we are really going to need IV meds in order to stay on top of his pain and keep him comfortable, especially if we want to be able to keep him at home (which we do since Joshua has made it clear that he wants to die at home, not in the hospital).? I found it ironic that I had this conversation with the palliative care team today, March 25th, which is the day I learned about Joshua's chromosome abnormality that would greatly shorten his life (in 2011).? Funny how those things happen, huh?Joshua is sleeping now.? As he dozed off, I told him quietly that I love him & he sleepily responded, "I love you, too."? I am praying that when he wakes up tomorrow, he will be feeling much better since he's not getting fed by g-tube anymore.? I'm hoping that we can get things figured out & set up so that I can take Joshie home soon.? If the doctors are correct and we don't have a lot of time left, I want to get my little guy out of here and home where he belongs, surrounded by the family who adores him.104 people this Sign My Guestbook | Read Tributes Written March 25, 2013 12:34pm by Kate Parker Joshua woke up a bit after 4pm yesterday.? He was able to sit up for a bit, but then needed to lay back down due to head pain.? Within an hour of being awake, he was requesting extra pain medication because his head hurt and he stayed laying down the rest of the day.? He did not throw up, but by 5 hours after waking, he was moaning and saying his belly hurt and then he went to sleep, which we think was an escape mechanism.This morning, we started quarter-strength feeds ~ 3 parts pedialyte + 1 part formula ~ and after an hour, Joshua's once again saying his head hurts badly & he's getting breakthrough fentanyl (his breakthrough dose is twice his hourly dose ~ 100mcg).? His nurse called the pediatrician (not Dr. S, as she does not work on Mondays) to discuss what is happening and the ped made some changes.? Now, instead of getting 70ml/hr of formula/pedialyte through his g-tube, he's getting 35ml/hr through his g-tube and 35ml/hr of IV saline.? The ped is trying to ascertain if Joshua can tolerate *any* feed through his gut or if he is going to need to get his calories/fluids via IV only.The good news is that Joshua remains happy & content while laying down.? His head doesn't hurt badly when he's in that position, so he keeps himself pretty flat.? It is really weird that the one day Joshua could sit up, pain-free & without needing any breakthrough medication, was the day we did not feed him anything through his gut.? I believe there is a correlation and it's autonomic in nature.? No one is arguing that; they just need to make a strong case if they are going to successfully petition insurance to pay for TPN for a child with an end-stage condition who is not anticipated to live much longer.? Insurance doesn't care that the child has a goal he is trying to reach.? If we can't get Joshua tolerating enough fluids to keep him adequately hydrated and TPN can't be ordered, it will leave us in an unhappy place that I don't want to talk about right now.? Joshie said he was hungry, so I gave him a quarter-sized piece of chicken strip.? He nibbled half of it and proclaimed that he was really full and then told me that even though he was thirsty, he didn't want to drink anything because his belly already hurt a little and he knew if he drank anything, his stomach would hurt a lot. *sigh*? I'm deeply sad for my sweet little boy.? I knew about the "big things" that could take his life, but no one ever mentioned all of the "little things" that could happen as Joshua's condition progressed.? Perhaps no one knew.? Perhaps no one thought about what deterioration of the brain stem would look like.? I'll admit that it's pretty tough to be connecting the dots AFTER the symptoms have already shown up.? It would be a bit easier (I think) if we had some idea of what else Joshua might have to experience before he dies. This whole not-having-a-road-map situation is the pits.He's telling me his head hurts again, so I need to go get the nurse to call the doctor to authorize yet another dose of fentanyl.? I am hoping the doctor tells us to stop the feeds entirely.? I want Joshua's days to be happy ones, not like what he's had for 6 of the past 7 days.72 people this Sign My Guestbook | Read Tributes Written March 24, 2013 5:19pm by Kate Parker Nothing to report yet today. Joshua is still asleep. He's been getting a verrrrry slow continuous feed of pedialyte since this morning & is tolerating it (no waking up to vomit). Emily & I are watching an NCIS marathon. It's a good day of "respite", as Dr. S termed it. I'll update again later if there's anything noteworthy to share.? If I don't write again today, know that we had a restful day and I'll update again tomorrow. Written March 23, 2013 7:23pm by Kate Parker Dr. S came to the hospital so we could have a long talk about Joshua & where things are going. I learned that when a chronically-ill person is getting closer to dying, they will eat and drink a lot less & basically slowly dehydrate themselves as other body systems begin working less effectively. It is not painful and they do not suffer. It is not like a Terry Schiavo situation where a person who is fully capable of digesting food/liquid suddenly gets sustenance taken away. It is a natural process. From all appearances, this is happening with Joshua. He isn't eating more than a couple tablespoons of food each day (if that) and he isn't drinking by mouth, nor is he getting fed via g-tube, and he's perfectly content. We are seeing increasing signs of systems struggling: he is having more trouble swallowing & saliva accumulates in his mouth, prompting us to remind him to swallow or spit it out (he often opts for spitting). His speech is getting more difficult to understand. He has a very difficult time urinating. His temperature & heart rate fluctuate wildly. His respiration rate is low when he's awake & extremely low when he's sleeping. Sometimes he forgets to breathe altogether for a brief time. He gets nauseated at various times during the day. All of this is related to progressing autonomic nervous system dysfunction (dysautonomia), which is directly related to his brain stem deterioration.We will be taking things one day at a time while he is in the hospital & our treatment plan for Joshua will evolve as we see how he does in the next few days. Tomorrow, we will start him on a continuous feed of pedialyte and see how he handles it. If he does not have extreme nausea, vomiting & /or diarrhea, we will try giving him 50/50 formula/pedialyte on Monday at a very slow rate and evaluate how he handles that. If he does all right, then we will spend Tuesday trying full-strength formula and seeing if we can get him to tolerate the rate we need him to handle if he is going to keep himself hydrated (68 ml per hour). If he can't handle that, we will start him on TPN (IV nutrition & fluids) in order to help him reach his goal of being the ring guy in Adam & Faith's wedding (23 days from today). Despite our efforts to support his GI tract & provide adequate calories & fluid, we can do absolutely nothing to stop the ongoing progression of dysautonomia and if things continue at the rate they are currently moving, Joshua may not live a lot longer. Dr. S DID say that there is no way to know for sure, of course, since we're in uncharted waters and Joshie is definitely doing things his own way, but with what we are seeing and new symptoms developing almost every day, she is not feeling very encouraged.She agreed with my thoughts about the monitors and after making sure we could legally stop using the heart respiration rate monitors while he's on an IV of fentanyl, a nurse came in to remove the patches & turn off those screens, so now he's only on a pulse ox for monitoring (with the parameter set low enough that it will only alarm if things are truly worrisome by Joshua's standards) and we are both enjoying the quiet of not hearing alarms blaring all day long.? Emotionally, I'm feeling pretty numb right now.? It's been almost 2 years to the day since I learned Joshua had a chromosome abnormality that was incompatible with a normal lifespan, but as crazy as it may sound, while I knew he would eventually die, a part of me didn't think it would actually happen.? After all, it's been 2 years and he's still here, right?? A part of me thought that maybe he'd surprise the doctors by living for years to come.? Most of me isn't shocked... just stunned.? It's one thing to theoretically know that eventually, this awful thing is going to happen.? It's something quite different to have the theory turning into actuality.? The emotions that accompany *that* (for me) are kind of all over the place.? For tonight, I'm going to thank God that I have this time with Joshua in the hospital where I don't have to attend to other children or make meals or do laundry or run errands.? I'm going to be grateful for this undivided time and I'm going to enjoy being with my little boy, just like always.? I'll try to make the most of each day, just like Joshie does, and not look too far into the future.? 88 people this Sign My Guestbook | Read Tributes Written March 23, 2013 10:33am by Kate Parker Soooo... Joshua's respiration rate alarm drops if he goes below 10 breaths per minute. Did you know that Joshua breathes less than 10 times per minute ALL. THE. TIME (I did)? Granted, I appreciated the alarm when he completely stopped breathing at 4am, but that was a much different, "heysomeonegetyourbuttinhererightnowthiskidisn'tbreathing" alarm and NO ONE was going to sleep through that! A firm jostle encouraged Joshie to inhale again and all was fine, minus the adrenaline spike. Anyway, between the respiration alarm, his heart rate alarm, his O2 alarm and the mechanical failure of one of his pumps in the middle of the night (that one is a high-pitched, solid buzz that sounds just like a flat-line sound in a tv show, btw. Again, great way to get a mother's adrenaline flowing when being woken to it), sleep was not very forthcoming. I gave up at 8am and just got up. Emily is still conked out. The alarms don't disturb her at all, which doesn't surprise me since she's my kid who slept through a smoke alarm going off 2 feet from her head. She's on the opposite side of the room as Joshua versus sharing a bed with him (which, incidentally, also does not lend itself to good-quality sleep, but how could I refuse when he asked me to sleep beside him?). Yeah, I'm being whiny, but I'm tired. Today I will ask whichever pediatrician is on call if the parameters for his heart rate and respiration rate can be lowered significantly more than what they're currently at (60 for heart rate, 10 for respiration rate). Dr. S agreed to set the alarm for O2 at 85% yesterday, so I am hopeful that I can get them to change the settings for the other two. I doubt they'll agree to the rates I'm hoping for (40 for heart & 5 for respiration rate), but honestly, since Joshua is a DNR, it's not like they would DO anything, anyway, and I would prefer to get some sleep versus having almost-constant reminders that *something* abnormal is going on.He is sleeping peacefully, sucking on his tongue, completely undisturbed by the alarms, which is a good thing.? I gave him his 8am meds (the nurse handed me the syringes & I pushed them into his g-tube) and he didn't flinch or wake up from immediate nausea, so that's a good sign.? I'll update again later today after Joshie is awake and I've spoken with his doctor.53 people this Sign My Guestbook | Read Tributes Written March 23, 2013 2:46am by Kate Parker After 21 hours, Joshua finally produced some urine. His labs look beautiful ~ no sign of illness whatsoever.? He's had no diarrhea since we stopped feeding him via g-tube.? The only time he complains of nausea is after getting g-tube meds.? His headache is not as severe and he can sit up for about 5-10 minutes before needing to lay down once more. He's sat up three time since arriving ~ each time to pee ~ and the rest of the time has been spent lying down. He took a 4 hour nap this afternoon/early evening. In addition to his other pain meds, he's getting a continuous drip of IV fentanyl, which is definitely helping him to be more comfortable. He has played on his iPad this evening & chattered to himself a lot as he did, which was sweet to listen to. All of his symptoms/behavior indicate his brain stem is being more problematic, but for tonight, I am happy that he is smiley & feeling better. It's a little concerning to me that his happiness & feeling better comes from NOT putting formula & water through his g-tube, but I'm sure everything will get figured out in the next few days, so I'm not going to worry about it tonight.67 people this Written March 22, 2013 4:48pm by Kate Parker We're at the hospital. Joshua has his port accessed & is getting a large bolus of saline to begin rehydrating him (he hasn't peed since 10:30pm last night). He is not acting sick and Dr. S doesn't think he's ill, either, but we're doing labs & will check a stool sample for rotovirus & c-diff as a "just in case".? Both of us would be utterly shocked if anything came back positive.? Diarrhea, nausea, vomiting, vision disturbances & flushing are all symptoms associated with an autonomic system that is not functioning properly (dysautonomia).? Since the autonomic system is controlled by the brain stem, it is in-keeping with Joshua's condition that we would see these symptoms as his brain stem progressively deteriorates.? It's very unfortunate, as Dr. S phrased it, but sadly, not surprising.? The GI tract's peristaltic action (what moves food/fluid from mouth to anus) is also controlled by the autonomic nervous system, so Joshua's new inability to tolerate feeds at the rate he was at just last week is also a symptom we can attribute to dysautonomia. The newest symptom that he's having is flushing of half his face.? The right side gets red while the left side stays pale.? It's interesting-looking, but thankfully not anything to worry about. It's just one more thing pointing to what is happening inside his little body.As long as he lays flat, he is cheerful, and right now, he is happily watching SpongeBob on Nickelodeon. His nausea is gone now that we are not feeding him through his g-tube and he is not sitting, even in a semi-reclined position.? I am thankful that he *is* happy and content in this position.? This would be much more difficult if he was miserable no matter how he was positioned.He'll be getting a continual drip of IV fentanyl to control his pain once pharmacy gets over being unnerved by the dosing prescribed by Dr. S and brings it to the floor.? It happens each time Joshua is admitted now, but I am hopeful that since we did the same routine just a few weeks ago, the process might go faster this time.? I'm not concerned; I brought all of Joshua's meds with me & Dr. S told me that if it takes pharmacy awhile to get the fentanyl going, I can administer oxycodone as needed.Megan is at home taking care of the other kids & I brought Emily with me at Joshua's request. It works out well since she can stay with her brother while I step out of the room to talk with doctors.? Joshie doesn't like being alone, so I'm happy Emily came along.? She provides comic relief, which is a much-appreciated skill.? Charley has today & tomorrow off work, so he'll come to the hospital tomorrow to see his little boy.I've explained to Joshua that he won't be here permanently and at the suggestion of a friend, I brought the paper chain that is marking down the days until Adam & Faith come home so that he can continue tearing off one ring per night and have something tangible to look at as a reminder of what he's fighting for.? I think that will help.77 people this Sign My Guestbook | Read Tributes Written March 22, 2013 10:37am by Kate Parker Dr. S called. We're admitting Joshua today. A few days of IV fluids & gut rest to see if we can turn this around or if his gut is permanently hit due to progressing autonomic dysfunction, in which case we'll move to putting him on TPN. Praying that it's just a weird viral thing and that giving his gut rest from needing to digest pedialyte/formula will stop his nausea and diarrhea and help him to start feeling better. Please pray for Joshua to not "give up" in the hospital and for absolutely-clear results that give us definitive direction for his care.? I'll update as things go along.72 people this Sign My Guestbook | Read Tributes Written March 22, 2013 1:09am by Kate Parker Things aren't really going in the direction we need them to. After 20 hours of sleeping, Joshua woke (at 4pm) and was able to walk to the family room by himself, where he immediately laid down on the couch & stayed for the evening. He tolerated 55 ml/hr of pedialyte+formula (half & half) fairly well, though he complained of "feeling yucky" several times & requested that I stop his feed completely so he would not throw up.? I would comply, then re-start the pump at a slower rate and gradually increase it back to 55 ml/hr.? I could not get him to tolerate a faster rate, which means he was at least 13 ml/hr too slow to keep up with his minimum fluid requirement. I realize that may not sound like much & really, in one hour, it's not a lot, but over the course of 24 hours, it adds up to just under 10.5 ounces, which is almost 20% of Joshua's daily fluid need, so it's significant. He continues to lose fluid via diarrhea, too, which is another source of quick dehydration that is concerning. He was able to drink about 4 ounces with no vomiting, so that was good. He sat up for about 5 minutes before his head hurt badly & then he needed to lay down again. Overall, he is more quiet than usual, but is still happy.? Today, he enjoyed directing Sarah on a Wii game ~ she played for him but did what he asked of her, which worked out well.I have to take him in for a port flush tomorrow, so I emailed his pediatrician today to ask if we could do labs to determine if Joshua has an illness (we'd see a viral shift on the lab results) or if the symptoms are solely caused by progressive dysautonomia.? If he is not sick with some mild virus, then it would seem his gut is being overtaxed now & we might need to put him back on TPN and only use his GI system for digesting medication.? Dr. S wrote back and said she will call me around 8am tomorrow to talk about the day's plan and then we can meet for a long talk on Saturday to discuss where we are going to go from here.? At this point, I am hoping we can switch him to TPN because it would remove the concern about fluid balance & caloric intake.? Knowing that Joshua would be getting what he needed to stay hydrated & fed via his central line regardless of how his autonomic dysfunction progresses would be reassuring to me.? I don't want him to die of dehydration or starvation and TPN would prevent that.? I don't know if Dr. S will want to admit Joshua to the hospital tomorrow, but I won't be surprised if she does.? She told me that Joshua isn't a kiddo we can take a "wait & see" approach with, so the fact that he is not tolerating a continuous feed at the minimum rate necessary to keep him hydrated and he is still battling nausea despite our increasing the frequency of giving anti-emetic medication and his head pain is not well-controlled despite increasing the dosage of methadone & breakthrough doses of oxycodone means Dr. S may recommend admitting Joshie for a "tune up" in the hospital so we can tank him up on IV fluids & meds & give his gut a complete rest before attempting to restart g-tube feeds once more.? As much as I dislike needing to put him in the hospital at this stage of his life, I would be okay with doing it (so would Joshua ~ I talked to him about the possibility of going to the hospital to get fluids & medicine to help make him feel better).? I feel like I need some outside help to get things turned around and going in a better direction.? I realize a hospitalization may not succeed in achieving that goal, but I would be amenable to trying if that is what Dr. S thinks we should do. 64 people this Written March 20, 2013 4:27pm by Kate Parker Today is better in some ways, yet not in others.? For those who have left comments saying that they hope that knowing so many are praying & caring brings me some comfort, I want you to know that yes, it absolutely does.? Thank you for sharing in the ups & downs of Joshua's life & for being a source of support & encouragement to me.? It IS helpful and even when there's nothing that anyone can say that is going to make this situation not hurt anymore, just knowing that others are sharing my sadness helps because it tells me I am not alone.? It makes me smile through my tears to know that so many people care about Joshua.? Thank you.? ((( virtual hugs to you all )))The increased methadone is helping Joshua to be comfortable as long as he is laying down.? He has had an hour here & there where his head isn't hurting at all, but more often, he says his head hurts "easy", which he translates into feeling good.? In other words, as long as he lays flat, his head pain is mild enough that it doesn't bother him. He is able to watch a movie or a sibling playing a game on the Wii and he appears content & in no distress. He hasn't yet attempted to play on his iPad or on the Wii, himself, and he still needs things to be more quiet than usual, so the other kids are being very thoughtful & accommodating that to help keep their brother comfortable.? This pain control is a vast improvement over the past few days and I am very relieved that the increased methadone is helping while not over-sedating my boy.On the flip side, however, is that Joshua still cannot sit up or even slightly reclined without severe head pain & nausea.? He experiences nausea when we give his meds even though we have slowed the rate at which we push the medication in to a snail's pace ~ 3 days ago, we could push 20ml of medication into his tube in about 4 seconds.? Just a steady pressure on the plunger of the syringe & that was it.? Now I give 1-2ml, wait 5 seconds, give another 1-2ml, wait another 5 seconds, and continue in this pattern until the syringe is empty.? 20ml takes a minute or more to push in.? Even at that slow rate, Joshua says he feels like he might throw up.? It is discouraging to see how quickly things have changed, but it's very consistent with how Joshua's been his entire life.? When he's good, he's really good, and when things take a turn, he tanks quickly.? I am still hopeful that we'll see more improvement as the increased methadone dosing takes full effect (that happens after 48 hours).? I am praying Joshua's ability to sit upright without pain will be restored.Little man just threw up.? I've adjusted his pedialyte to just 1.5 ounces per hour and will keep it that low for a bit to help his belly settle (for comparison purposes, up until yesterday, he was getting 3 ounces of water per hour for 10 hours at night & 6 ounces per hour of formula for 4 hours during the day, and he drank 4-16 ounces of fluid by mouth).? We need him to tolerate 2.25 ounces per hour for 24 hours in order to maintain his minimum fluid requirement so that he does not get dehydrated because as soon as he gets even slightly dry, he goes into vomit universe (part of his autonomic dysfunction), so I am a bit concerned about his needing me to lower the rate from the 2.25 ounces per hour he's been getting since seeing the doctor yesterday.? If you are praying for Joshua, please pray that we can maintain his fluid balance and keep him out of the hospital.85 people this Sign My Guestbook | Read Tributes Written March 20, 2013 1:27am by Kate Parker Today was a scary, sad day. The thought that so many are praying for 28 more days for Joshua is both comforting & devastating to me. Think about it ~ we are begging God to let Joshua live for 4 more weeks.? Four weeks? He is barely 7 years old!? He should have DECADES ahead of him, not merely weeks (or even months). The possibility that we could have so little time remaining is a knife in my heart. My precious little boy hugs my neck & blows me kisses & smiles that beautiful smile of his that makes his eyes dance & shine and I wonder HOW can God think I will be able to survive losing him?? Yes, I still believe He is working out a plan that is for good, but interestingly, my head can know & believe something & even be comforted by it, but my feelings are off in another direction entirely.? I don't want my family's time with Joshua to end.? Not in 4 weeks.? Not in 4 years.? I realize what I want is not going to happen, but tonight, the longing for a different ending than what is coming is overpowering.79 people this Sign My Guestbook | Read Tributes Written March 19, 2013 9:35pm by Kate Parker Okay. Phone call with Adam is done and he was able to talk to Joshua, too, which was good for both of them. Dr. W (neurosurgeon) and her new partner, Dr. B, both carefully evaluated Joshua's CT scan & compared it with previous scans. Ultimately, they decided that while the results are not "normal," they are normal for Joshua. They are 100% convinced this is not a shunt-related problem. Instead, Dr. W believes this is condition progression.? The PA & I spoke about how Joshua had presented with the same symptoms in October, 2011 ~ sudden inability to sit up without screaming head pain & vomiting ~ and how, had Dr. W not done surgery, he would not have had much time left to live.? The concern is that we are in this place again, only this time, there is no option for surgery. We need 4 weeks so he can be the best man at Adam & Faith's wedding. I was told that they are sorry they can't fix this.Dr. S (pediatrician) is questioning if Joshua might also have a tummy bug, but since none of the other kids are sick, that is probably not what is going on. As long as Joshua is laying down, he doesn't feel nauseous, but when his head is more upright, he feels the need to vomit. In a couple days, when Dr. S is convinced this isn't a viral illness coupled with condition progression, we'll discuss what anti-emetic we can add to Joshua's medication regimen to potentially lessen his nausea & maybe enable him to begin sitting upright again. Right now, he gets zofran every 8 hours. We'll probably move to giving him that every 6 hours and then add a second medication, too.The new palliative care doctor (Dr. G) increased Joshua's methadone doses by 20%. It will take 48 hours for the full effect to be seen and hopefully, it will be enough to get Joshua out of pain while not over-sedating him.Thank you SO MUCH for your prayers! It definitely helps.? Today has been frightening & stressful & while I did not want Joshua's shunt to be messed up, I also really did not want to hear that this looks like where we were in October, 2011 and it is kind of devastating to have to face it even though I knew this time would eventually come.? A large part of my stress/sadness today comes from knowing Joshua & Adam are 8000 miles apart.? If Adam were here, I would still be scared, but I wouldn't be feeling like I have to do everything humanly possible to keep Joshua here.? And that's how I do feel.? I promised Adam I would do everything in my power to keep Joshua "okay" until he and Faith get home.? I know there's not much I can actually DO other than what I'm already doing every day, but still... I'm the mom.? These are my boys and I want to make things okay for both of them.? I can't stop Joshua from dying, but dang, I am begging God to not take him before Adam gets home.? Joshua dying while Adam is gone would be horrible and the thought of having to call Adam in the Philippines and tell him his brother died makes me feel sick inside.? It is my fervent prayer that *that* scenario will not come to pass.? There's more rolling around in my head, but I think if I start typing, I will talk in circles and I don't want to do that right now, so I'll end this for now and once again say "thank you" for caring about Joshua & the rest of my family.? Your support is invaluable to me.70 people this Written March 19, 2013 8:56pm by Kate Parker CT scan is normal for Joshua. Lots more going on, but need to update Adam first (via phone). Will be back soon with more details, but wanted to let you all know that it's not a shunt malfunction. 40 people this Sign My Guestbook | Read Tributes Written March 19, 2013 6:30pm by Kate Parker At hospital doing CT scan. Will go back to Dr. S's to wait for further direction/plan. Sent from CaringBridge Mobile44 people this Sign My Guestbook | Read Tributes Written March 19, 2013 3:25pm by Kate Parker Joshua woke around 10am with his head hurting.? It got steadily worse despite all attempts to bring the pain under control & culminated with him vomiting.? I would think this was "just" him needing an increase in pain medication except that this time, his pain is very position-related.? When he lays flat, his head hurts "easy to medium" (his description ~ his pain scale is 'easy, medium, hard & super bad'), but when he sits up or tries to stand, it gets super bad immediately.? That concerns me and makes me wonder if his VP shunt is getting occluded. The ped is on the phone at this moment with the doctor in Portland and I am awaiting a call to tell me what the plan is.? If Adam were home, I would be handling this crisis much better because I could say, "Okay, we knew this was coming someday," and I'd deal with it.? But he's still out of the country.? He & Faith will be home in 18 days and their wedding is in 4 weeks.? Joshua still wants to be 'da ween die' and is insisting that he is going to try to hang on until Adam & Faith come home.? Because that is his goal, I am going to do all I can to help him reach it.? Right now, he is laying in a darkened room and he says his tummy doesn't hurt and his head only hurts "easy".? He said God is making his head not hurt so much, so thank you for the prayers because they are helping.? I know the oxycodone helps, too, but honestly, even after getting a huge amount, he was still hurting tremendously & he cried out to God and pleaded, "Please God, make my head not hurt," and within minutes, he was saying his head didn't hurt except a little bit because God made it not hurt.? I'm not going to doubt the presence & power of God, especially when Joshua is adamant about what is helping.Please pray that this is NOT his shunt and that we will get his pain under control again by increasing his methadone.? And please pray that God will grant Joshua's wish to be in his brother's wedding. After that, I won't ask God to extend Joshua's life again & I will do my best to accept that his time on earth is coming to an end, but I am begging Him to give us this.? For Joshua to be okay until Adam & Faith get home & to allow and enable him to be the best man/ring guy at their wedding.69 people this Written March 19, 2013 10:38am by Kate Parker I sent an email to Dr. S last night, asking if she would please contact Melissa (Dr. T's replacement palliative care doctor at Emanuel) to ask about changing Joshua's methadone dose. I emailed Dr. T last week (via his photography website, which I know is SO professional, but it was the only way I knew to get in touch with him), asking if he was going to provide Dr. S & me with his contact information so we can keep in touch regarding Joshua's care. You know, since he assured me repeatedly via email & in phone calls & in person when I saw him (during our discussions about Bethany) that he would always remain available to Dr. S & me for Joshua's care even though he was changing jobs and going to a different hospital? His response was that for now, he thinks it would be better if we contact Melissa & Kathleen since his new job doesn't allow him the independence that he had at Emanuel and blah, blah, blah (other excuses/justifications ~ it is probably completely legit, but the feeling it left me with was the same... that of being abandoned by the doctor who was the head of my son's medical team). So... please pray that not only can Dr. S contact Melissa, but that Melissa (who has never met Joshua) will make very wise choices for my little boy's care. 48 people this Sign My Guestbook | Read Tributes Written March 19, 2013 1:09am by Kate Parker It was a really hard day.? Joshua's head pain never did go away despite LOTS of oxycodone and he eventually went to sleep.? He had one desat down to 81% (while awake & laying down) and after he fell asleep, his oxygen level dipped to 83% frequently, but eventually he stabilized again and then his oxygen stayed above 90%.? It's now 11pm and he has just woken up, but is laying down because he says his head is hurting.? Megan is pulling up another 400mg dose of oxycodone and I anticipate that Joshie will go back to sleep soon.?? I am hoping & praying that he will feel much better tomorrow.? I don't really understand what is happening, physiologically, to cause his head to hurt so much (it's especially bad when he stands up), but if it continues, I will contact the palliative care doctor and see about increasing Joshua's dose of methadone.Thank you to everyone who has been & will continue thinking about & praying for Joshua.? I sincerely appreciate it.1am update:? By midnight, Joshua was crying as he laid on the couch, holding his head and asking if we could go to bed because his head hurt so badly.? He got his scheduled meds and then Megan & I brought him upstairs and settled him in for the night.? I just sent an email to Dr. S to inform her of what is going on & to request that she call Portland for guidance regarding how to increase his methadone.? We have to do *something*.? 63 people this Sign My Guestbook | Read Tributes Written March 18, 2013 12:47pm by Kate Parker Joshua woke because his head is hurting very badly. We've given him the maximum amount of breakthrough oxycodone that we can & he's had his scheduled oxycodone & methadone & other medications, but it isn't bringing him relief. He is laying on the couch, resting. He is very tired (he doesn't usually wake up until 4pm or later), but in too much pain to sleep. Please pray for his head to stop hurting so much.Written March 12, 2013 2:55am by Kate Parker This day was full of blessings & glimpses of the love that God has for His children.? Not only did He give me a special gift with Bethany (see her page for details), He doubled my joy by giving Joshua a super-happy day.Joshie had energy to go outside to play a light saber battle with Isaac.? He picked flowers & leaves and set them in a pile that he called "my collection".? He ate an entire peanut butter & jelly sandwich (minus the crust) and asked to drink milk from a "big boy cup" (no lid).? He had no breakthrough pain today, which was FANTASTIC!? He brought me a flower and a "very special leaf" that he said he knew I'd love.? Throughout the day, he would come over to wherever I was just to give me a hug or a kiss and tell me how much he loves me. He told me, out of the blue, that he thinks we should adopt another baby girl and "give her my name."? I asked what he meant by that, saying with a laugh, "I can't name a little girl 'Joshua' ~ that's a boy name and it's YOUR name!"? He smiled at me and clarified, "No, not Joshua.? My other name!"? I asked, "Gabriel?" and he nodded & asked, "What is the girl name like my name?"? I told him, "Gabrielle," then added, "Or Gabriella."? Joshua nodded again & announced decisively that we should adopt a baby girl and name her Gabriella.? He pronounced it "Dab-ee-ewwa," which was pretty dang adorable.? I grinned and asked him why we should name her Gabriella, to which he answered, "Because it's cute!? Don't you agree?"? I didn't bother bursting my little guy's bubble by pointing out that I have no plans to adopt again.? I just smiled and agreed that Gabriella was a very cute name, which pleased him.After the past few tough days, having my smiley, playful Joshua back again was such a relief and a joy. Hours of listening to his cheery voice and giggles & feeling his little arms around my neck & his little kisses filled me with a happiness that defies explanation.? Tonight, I thank God for the gift of this day, for the blessings in the little things that mean so very, very much.? ?92 people this Sign My Guestbook | Read Tributes Written March 11, 2013 3:07am by Kate Parker The past few days have had some tough moments for Joshua.? He's had two days of sleeping just under 23 hours out of 24, which is harder on the family than him since we miss his presence when he is sleeping the day away. Tonight, he woke at 6pm and was asleep again by 7:30pm.? He had tripped and fallen a short time after waking up and while he was not injured, the jarring as he landed ricocheted up to his head and caused intense pain.? Multiple doses of oxycodone didn't rid him of the headache, so Joshua escaped the pain by going to sleep.? I thought that he was out for the night, but shortly after midnight, he woke up with a smile and wanted to eat peanut butter toast.? He is a tough little guy, for sure!He is still tired at all times and he's been needing help blowing off CO2 more frequently each day.? We count down the days until Adam comes home and Joshie reminds us all that he is going to heaven after the wedding. On March 7th, when Joshua woke & came downstairs to feed his fish, I had to gently explain that Captain Gills had died. Molly, one of the cats, had knocked the fish bowl over & mauled the betta, but I did not give Joshua that last detail. He had a few crying bouts and he emphatically rejected his siblings' suggestion of a new fish, saying, "You can't replace him! I'll just wait to see him in heaven." Megan, Joshua & I prayed together and asked God to please put Captain Gills in a special tank in Joshua's room so that when Joshie goes to heaven, he can see his fishy friend again.? *sigh*? He's had some recurring dreams that are causing him anxiety ~ he dreams that someone breaks into our house & tries to kidnap him.? Each time, he half-wakes up and asks me if I will get Adam if someone tries to grab him.? I always assure him that I will, promise that I won't let anyone hurt him and then he settles back down to sleep.? I'm no psychologist, but it seems obvious that Joshua is missing his big brother. They have a special bond.? Always have.? It's apparent to anyone who sees them together.? As such, I'm not surprised that Joshua is anxious about Adam being gone.? It's also why I'm not surprised that he is determined to live long enough to be the ring guy & best man for his brother's wedding.? I feel sad for him having bad dreams, though.? Overall, Joshua is hanging in and doing all right.? It's just been a rough few days.? I'm hopeful that tomorrow will be a happy day for him, though.? My little guy deserves it!68 people this Sign My Guestbook | Read Tributes Written March 5, 2013 3:03pm by Kate Parker Today is my birthday.? I am now 43 years old.? I remember when that seemed old.? You know, back when I was about 10!? LOL? Joshua has been a happy little sweetheart the past few days. He carries his new Perry the Platypus pillow pet with him wherever he goes and chats with it as though it's a person.? It's actually pretty dang adorable listening to him ask Perry a question and then adopt a high, squeaky voice as Perry "answers".? He sits and plays Legos with David & Isaac with Perry keeping watch beside him.? It's incredibly sweet to watch my three little boys playing together and I am grateful for the good days Joshie is having.He's been having a little bit more head pain, but we give him extra pain medicine and that's been sufficient to get him back to a place of comfort.? Thankfully, his breakthrough pain is not occurring frequently, nor is he desatting an excessive amount these days.I'm praying that this next month is one of stability for Joshua since Adam left for the Philippines today and will be gone for 4 weeks.? It would be truly horrifying to have something happen to Joshua and then have to tell Adam about it via Skype or phone, so I am praying it doesn't happen. For those who ordered magnets, I am sending them out today. Thank you so much for being a part of my little fundraiser ~ it helps with the medication co-pays for both Joshua & Bethany, which is a huge blessing. If anyone else is interested in a magnet, email me at parkerkidsmagnet@.? ?64 people this Written March 3, 2013 2:51am by Kate Parker Today was a wonderful day. Megan, Adam & I decorated for Joshua's birthday this morning while he was sleeping. I wrapped his presents and put them in a stack on the dining room table for him. I wrote little notes on each gift (excerpts from our special book, phrases Joshua & I say to each other, etc) and had rivers of tears streaming from my eyes by the time I was done. The very real possibility that this would be the last time I wrapped birthday gifts for my little boy hit hard. At the time, I hoped that I had gotten my crying for the day over with and would have only smiles once Joshie woke for his "All Perry Party" (from Phineas & Ferb) birthday celebration.? I'm happy to report that that is exactly what happened.Joshua slept until 5pm. Once he came downstairs, he was barraged with birthday greetings from his siblings and needed some snuggle time with me to finish waking fully (which made me happy ~ I love cuggling with my boy). Then he was ready & excited to open presents! About halfway through his gifts, he was obviously tiring, but he didn't want to take a break. As a result, after the gifts were opened, he was exhausted and wanted to cuggle with me in the rocking chair.? The other kids had been playing with Perry the Platypus masks that were part of a "Pin the Tail on Perry" game and they donned the masks once again to amuse Joshua as he rested.? He wound up laughing at his siblings' antics, which pleased everyone.When he was refreshed, Joshua wanted to break his pinata.? Adam placed the hook for the pinata on a swivel that he slid onto a broom handle and then he held it up for the kids to pummel.? Joshua would take a few swings, then announce that he needed to rest, which would give another child the opportunity to bash the pinata.? It took almost 6 minutes of laughing fun before Perry the Platypus broke into pieces, dumping candy on the living room floor. Joshie laid on the floor and laughed, "It's raining candy on me!"? It was super cute!? All of the other little kids scooped up the treats and placed them in a big bowl while Joshua pushed himself into a sitting position so he could unwrap and eat a peanut butter cup.? Birthday dinner in our house is always whatever the birthday person wants.? Joshua chose Burger King, so Adam, David, the birthday boy & I drove to pick up food for everyone. When we got home, Joshua ate one chicken nugget & a few french fries, then requested some oxycodone for a headache and laid on the couch to rest. After about an hour, he felt better, so we played "Pin the Tail on Perry", which was pretty hilarious.? Emily, David, Sarah & Isaac were all blindfolded for their turns, but Joshua didn't want to wear the mask, so Emily covered his eyes with her hands.? He took four turns and on the last one, he suggested that I should "just cover one eye."? So I did (of course).? Not surprisingly, he placed Perry's tail almost perfectly on that last try!? Everyone busted up laughing and Joshua did a little dance, chanting, "Go Da-do-wah!? Go Da-do-wah!? I da bet!"? (translated: "Go Joshua! Go Joshua! I'm the best!").? It was an awesome moment!? Then it was time for cake & ice cream.? Joshua had wanted a cupcake the size of his head with chocolate frosting & chocolate sprinkles, so I obliged with a huge cupcake made from two cake mixes (one chocolate, one yellow).? I surprised him, however, by scooping out some of the insides of the cakes & stuffing mini bags of m&m's and foil-wrapped chocolate bunnies inside, thus making his giant cupcake a pinata.? The look on his face when I cut into the cake and the candy fell out was priceless ~ a mixture of delighted shock & awe ~ and will be a? memory I will treasure when I think back on his 7th birthday celebration.? When we sang "Happy Birthday" to him, Joshua beamed throughout the song & then blew out his candles.? It took multiple attempts to extinguish the flames the first time.... and then they re-lit themselves!? It was so much fun to watch him blow out the candles over and over.? He wound up getting help from Adam & me after he got tired & couldn't really blow anymore, which was no big deal.? Joshua was happy and giggling about the candles that wouldn't stay out.? He loved the trick, which was awesome and made everyone else smile.I put together an album to share:? ? Thank you for all of the birthday wishes for Joshua.? It brought a big smile to my face to come here today & see so many comments & know that so many people care about my little boy.? I don't know how to tell you how much it means to me to know Joshie's life matters to more than just my family. Thank you for coming here, for following Joshua's story, for investing your time & emotions & for "talking" to me through comments & emails.? You help me to get through the tough times and you make the happy times even sweeter through sharing in my joy.? 86 people this Sign My Guestbook | Read Tributes Written March 2, 2013 2:32am by Kate Parker Happy 7th Birthday to my Joshiebear!? What an incredible milestone for him to have reached ~ I am so happy he's still here and I get to hug & kiss & cuddle him & listen to him laugh & see him smile. I know the odds are very low that he'll be here to see his 8th birthday, so I am going to enjoy every moment of this day. I thank God for the gift of my little boy. He is a treasure and I am SO fortunate to be his mom.? I'll update tonight or tomorrow with details & pictures of his special, fun day.? 91 people this Sign My Guestbook | Read Tributes Written February 28, 2013 1:40am by Kate Parker I took Joshua to get his hair cut today.? His head is too sensitive to allow me to do it anymore and he specifically asked for our friend to do it.? I had to wake him to leave because David had an appointment with the plastic surgeon (2nd follow-up from his skin graft) & I wanted to accomplish two things with one trip out (Adam & Sarah got haircuts, too).? Joshie asked for his hair to be "pikey wike Adam's," so that's what he got ~ buzzed on the sides and longer on top so it can be spiked up with gel.? He was quite pleased with the end result and omigosh, he's adorable.? He also looks even more like his biggest brother, which makes me smile.? I love that I will always be able to look at pictures of Adam and have an idea of what Joshua would have looked like as an older kid/adult since they are so similar in appearance.The outing wore him out, of course, and he was asleep before we got home.? After a 5 hour nap, he woke and played some games on his iPad.? He's working hard to breathe tonight.? About every 4th breath comes with a loud inhalation as he forcefully brings air into his lungs.? He isn't bothered by the extra work it's taking to breathe.? I can't say the same.Preparing for his birthday has left me feeling emotionally fragile.? Yes, it's fantastic that he will celebrate #7.? I am beyond happy that he's still here to sing "Happy Birthday" to.? So what's the problem?? I don't know how to put it into words other than to say it's incredibly difficult & bittersweet to buy gifts and the makings for a cake & decorations for a child's 7th birthday when you know the odds are extremely high it'll be the last time you get to do those simple things.? I know that I was expressing similar sentiments last year ~ that we were doubtful we'd get to celebrate another birthday with Joshua alive ~ and here we are again, both *getting* the privilege of celebrating with him here and *having* to walk through the emotions once more.? It's not a matter of choosing to not focus on the "what ifs", either.? I can't say, "Well, he's here now and who knows, maybe he'll be here next year, too!"? It's not that simple.? Unfortunately, I really don't know how to explain how I am feeling other than "a mess".? I'm joyful, thankful, happy as can be that I get to put up Perry the Platypus decorations on Saturday.? I can't wait to watch Joshua open his gifts because he is going to absolutely LOVE what we bought him ~ legos, bionicles, a Perry the Platypus pillow pet, a dragon mini pillow pet and an alligator cuddleuppet.? I will smile as we sing "Happy Birthday" to him and watch him blow out his re-lighting candles over & over.? But all of the happy will be tinged with sadness for me because I can't escape the thoughts that this will probably be the last time I get to do this with him.? I won't let the sad overwhelm the happy, but I can't pretend that I won't feel it when it's already happening. I dislike feeling this way.? I try to not get swamped by sad feelings, but between Joshua and Bethany and daily life, it's getting increasingly difficult to not feel overwhelmed at times.? The closer Joshua gets to leaving us, the more panicked I feel.? I realize logic would make a person think I would be a lot calmer since I've had time to get prepared, but you know what?? It doesn't get easier.? I think that having such a long period of anticipatory grief makes it easy for a person to get lulled into convincing themselves that maybe their child will be able to live years longer than the doctors thought.? Heck, Joshua's doctors didn't think he'd live to see 6 years old and now, here he is, about to turn 7!? So why couldn't he live to see 8 or 9 or 10, right?? Believe me, I think that, too.? But then I am forced to face the fact that he continues to slide downhill and we're seeing more and more signs that he's struggling.? And then there are the conversations that he initiates, telling us how he can't wait to go to heaven and how he wants to die after he's the ring guy at his brother's wedding.? Those things make it tough to believe he'll see another year of life and, as such, I am acutely aware of events that meet the "most likely the last time we'll get to do this" criteria.? It is tough.? Most days, I don't dwell on what's coming down the pike.? Approaching milestones such as birthdays or holidays, however, slam me right against a wall and say, "LOOK AT THIS AND ACKNOWLEDGE WHAT IT MEANS!"? Admitting to myself that yeah, this is probably the last time I get to buy streamers and balloons and presents for Joshua's birthday had me teary-eyed as I shopped for this very exciting, very happy occasion.? And it's the combination of feeling genuine happiness mixed with strong sadness that has me feeling wrecked.? Despite that, I freely admit I'd rather feel this mixture of emotions than face the alternative, which I know I'll be experiencing sooner than I could ever be ready for.Two nights ago as we were going to sleep, Joshua's voice broke the silence in the darkness as he announced with a giggle, "I can't WAIT to meet your daddy!"? I immediately asked, "What?? MY daddy?"? Joshua affirmed, "Yeah.? Your daddy.? I can't wait to meet him because he makes REALLY good hamburgers and steak and I get to have some!"? Ooooooookkkkaaaayyyyyy... that made me pause.? My dad was an amazing BBQ'er.? Every time the family got together, my father would BBQ and burgers & steaks were his specialty.? Joshua doesn't know that, though.? My dad died in 1993, thirteen years before Joshua was born.? The fact that he was a fantastic cook who specialized in BBQ'ing is not something that's ever come up in conversation.? So HOW did my son know this tidbit?? I asked him that question & he giggled before answering, "I just know!"? I pushed, asking him, "Did your angels tell you that," and Joshua said, "Nope!"? When I asked, "So who told you," he very seriously replied, "I can't tell you.? It's a secret." So who knows? It made me smile to think of my dad cooking a hamburger for Joshua, though, and I was comforted to get another reminder that where my child is going after he dies is a real, tangible, physical place.? 64 people this Written February 25, 2013 12:14am by Kate Parker This will be kind of a mixed update tonight. After doing some research today and talking with a friend who I knew had sold bracelets as a fundraiser for her son, I learned that it is ridiculously expensive to mail silicone bracelets because even though they are very lightweight, they are too bulky to go through the post office machines, so they have to be hand-canceled and therefore cost more to ship.? In order to make bracelets worth doing, I'd have to sell them for around $7 apiece, which is too expensive to do.? My friend, Kate Estes, told me about the magnets they opted to sell for Noah instead of bracelets, and after talking it over with Charley, this is the direction we are opting to take.I created a magnet that incorporates pictures of both Joshua and Bethany.? It says "Remember Joshua and Bethany Parker" and has their caringbridge addresses underneath.? You can view it here:? ?? My family & I want you to remember Joshua's smile, his laugh, his joy of living, his strength, his courage.? We want you to remember what has made you want to follow his story and when he has died, we simply want you to remember him.? That he lived, that he was an incredible little boy.? We want you to remember Bethany's smile and her story.? How she survived 3 years in a Ukrainian orphanage and joined our family through the gift of adoption.? We want you to remember her spirit and the strength of her will to live despite the odds stacked against her.? After she dies, we want you to remember that she lived.? That she was a special little girl. If you want to order a magnet, please send an email to parkerkidsmagnet@ and tell me how many magnets you would like and your mailing address. I will respond by email with the paypal address to send payment (this will confirm that I received your order). The cost for magnets is $5 each for 1-2 or $4 each for 3 or more (ie: $12 for 3, $16 for 4, $20 for 5, etc).I have ordered magnets and they will arrive in one week, so orders placed now will have a short delay before the magnets are shipped to you. However, if there is a strong response to this fundraiser, I will order more magnets so that there won't be a wait for orders to be mailed out.? The profit from selling magnets will be used for Joshua and Bethany's ongoing medical expenses ~ specifically, their prescription co-pays, which amount to several hundred dollars per month.I thank you in advance for considering helping my family by purchasing a magnet.? :)Switching gears, let me update you on Joshiebear.? He is tired.? It is apparent to even the younger kids in my family that their brother is wearing out.? Joshua mentions multiple times per day that he's really tired.? A few nights ago, Megan suggested that maybe he should go to bed early and sleep until he's not tired anymore.? Joshua's response pierced both his sister & my hearts:? "If I sleep until I am not tired anymore, I won't ever wake up."? I quietly told him, "Joshie, if you need to go to heaven now, it's okay.? You can go."? He was quiet for a minute before answering, saying, "No, not yet.? I want to do things still."? He continues to have a good quality of life ~ he's not hurting, he's happy, he enjoys the things he is able to do ~ but he is living less.? That's how my friend phrased what she sees happening with her child and it describes perfectly what we are seeing with Joshua.? He does less & less as time goes on.? He is more tired & he needs to rest more often even though his activities are all sedentary ones.? We hear him loudly draw in deep breaths throughout the day and we regularly light matches for him to blow out to help him get rid of excess carbon dioxide since regular breathing isn't sufficient to do that anymore.? His back is so stiff from scar tissue that's built up that cuddling is difficult for him to do.? He can't sit comfortably in my lap anymore.? When he wants to snuggle, he lays between my outstretched legs, resting his head on my thigh while covered with one of his special blankets, and I bend over him to gently hug him and I stroke his hair.? It is painful to see increasing limits placed on what he can manage and deterioration that takes away his abilities.? I know I have said that a lot this past year, but it never ceases to be true.Emily and I are going to make a paper chain to count down the days until Adam & Faith's wedding.? They are planning a mid-April date and we want to give Joshua something tangible to help him visualize how many days there are before he gets to be 'da ween dye' since he has made it clear that is what he is staying here for.? Honestly, there are days when I wonder if he will make it to the wedding, but there are just as many days that I feel confident that he could be here for many more months.? At the end of every day, I realize that only God knows what He has ordained for Joshua. I don't let myself spend more than a few fleeting moments here & there focusing on it, but there really is no way that I know of to prevent thoughts of Joshua's death from entering my mind.? We (my family & our pediatrician) know the end is coming and all appearances make us believe it will happen in 2013.? And we know there is no chance of a last-minute surgery to grant us more time (like what we got in November, 2011), so as Joshua gets increasingly weary of fighting, the knot in my stomach grows larger.? I will never stop assuring him that it's okay to go to heaven so he can be pain-free and happy forever, but between you & me, the sadness in my heart is increasing as my time with Joshua grows shorter and no matter how many tears I shed, there seems to be an endless supply ready to take their place.67 people this Sign My Guestbook | Read Tributes Written February 20, 2013 1:48pm by Kate Parker Joshua is happy that we adopted.? He thinks we should adopt another baby (not in our plans, but I am not telling him that! LOL).? He enjoys watching coming-home videos of children who have been adopted and he smiles and giggles as he says how cute they are and how happy their mommy is to have them home.? In honor of Joshua's upcoming 7th birthday, I want to ask you to consider helping my friend, Leah, raise the last bit of money she needs to complete the adoption of her 3rd son from Serbia.? She and her husband, Dean, travel in April to bring little "B" home and they are hosting a really great fundraiser on their blog right now.? Would you go look and then, if you can give a little something, please do (you can win some great things if you donate)?? You can call it a birthday present for Joshua.? I would love to be able to tell him that people care so much about him that they wanted to help Leah get HER little boy home.? I think it would please Joshua to think he played any part in helping an orphan get adopted.? The link is here: ? If you donate, you can tell Leah it's in honor of Joshua.? I know she'd be as touched by that as much as I would be.Also, a couple of months ago, a kindhearted lady who has been following Joshua's journey emailed me and asked if I would mind if she had some silicone bracelets made and sold them to help us raise some money toward Joshua's ongoing medical expenses.? I had never thought about doing something like that, but I told Julie that I would not have a problem with her spearheading that project on behalf of Joshua.? She left a comment in the guestbook a couple of days ago and I want to make sure it gets seen for anyone who might be interested (thank you, Julie!):To all who follow Joshua's story as he continues to write it:I approached Kate a few weeks ago with an idea I had. She okay'd it, so with her blessing, I'ma run it past the rest of you. Forgive me if it's a bit rough - I'm a very capable orator, but my written word is never as smooth.I want to fo something for Joshua and all the Parkers. To make his story known, share his joy of life, make sure he is remembered outside his family as well as within it...and make life even just a little easier for all of the kids (and their parents.)To this end, I was considering ordering a set of those rubber bracelets that have words engraved on them. Before Kate takes time from her crazy-busy routine and maybe talks with Joshua about what would be written on them, I would like to get a rough estimate on how many - if anyone - would be interested in buying such a thing. The more I can order at once, the cheaper they will be, of course. Counting the cost to mail them, and even to give a bit to the Parkers, I'd say that they'll be "about" $5 each.So...as the saying goes...raise your hand if you would be interested in honoring the Parker family...honoring Joshua...in this way. That is, put a "yes,please" or similar on your next note. I'll count the number up, and if there's enough interest, I'll talk with Kate again, and get the ball rolling.Julie RittI can't really think of what should be written on the bracelets.? I am open to suggestions, though, so if you have an idea, please leave a comment in the guestbook.? My family has thought of things like, "Joshua, our little hero" (that's what some close friends call him), or "Thinking of Joshua" or even just his name "Joshua Parker".? We don't want "Praying for Joshua," because not everyone prays and we don't want anyone excluded who might otherwise want to show support for our little guy.? So... if you have any thoughts, ideas, suggestions, please let me know! 56 people this Sign My Guestbook | Read Tributes Written February 19, 2013 10:51pm by Kate Parker Joshua is stable.? Around our house, the consensus is that he and Bethany are taking turns being needy and right now, it's his sister's turn.? Truth be told, I'm okay with that.? Life is much more manageable when I don't have both Joshua & Bethany in crisis mode simultaneously.In just 10 days (and a few hours), on March 2nd, my little boy will reach a very special milestone. He's going to celebrate his 7th birthday!? I could cry with gratitude that God has extended Joshie's life so much further than anyone ever anticipated was possible.? I vividly remember one year ago, when Dr. S, our pediatrician, hugged me at the little party she had for Joshua at her office and whispered victoriously in my ear, "No one thought he could make it to 6!"? She and I are both happily amazed that Joshua has survived another year.? If it weren't for the fact that he tells us (almost daily) things like, "After I'm the ring guy in Adam & Faith's wedding, I'm going to die," I would dare to hope he could live to see his 8th birthday.? With where's he's at now, though, and the struggles he has with breathing, I don't really believe it's going to happen.? Today, though, instead of being sad about that, I am focusing on how fantastic it is that I get to go shopping for birthday presents this week and how happy I am that I get to decorate the main rooms of the house with orange, blue & red (Joshua's favorite colors, in that order) and how my family will get to gather around the bravest, sweetest, newly-minted 7 year old we know and sing, "Happy Birthday" as we listen to him laugh.I truly thought we'd be marking Joshua's first birthday in heaven this year.? That we aren't... that we will be celebrating March 2nd with him still here with us... is astounding to me.? I am overwhelmed with thankfulness to God for answering our prayers for more time.? I still wish he'd answer our prayers for a complete healing that would allow Joshie to stay here with us forever.Written February 11, 2013 10:37pm by Kate Parker Remember how I wrote last week that Joshua had had a restless night and had spent about an hour staring at a corner of the ceiling in his hospital room, but wouldn't tell me what was going on?? Today, when he woke up at 4pm, he wasn't ready to go downstairs right away, so Megan & I laid on our beds and Joshua cuddled up against me.? Then, without any prompting from us, he began talking about what had happened that night.He told us that when he was in the hospital, the angels came to his room and they said his room was ready, but he told them, "I don't think so!" (not in a snotty tone, but rather, a matter-of-fact one).? Megan & I exchanged a shocked look because I had told her about what a weird experience it had been to watch Joshua staring intently at the corner of the room, up at the ceiling level, and that I had *known* something was bothering him, but he wouldn't tell me what it was, and how, at one point, he had said, "I don't THINK so!" and when I had asked what he was talking about, he glanced my way & answered, "Nothing," then rolled on his side & announced in a somewhat-grumpy voice, "I'm going to sleep now."? So to hear him say, today, that those words had been uttered in response to God's angels announcing that his room in heaven is ready for him shocked Megan and me into speechlessness.? It also made me think back to the brief flashes of light I had seen four different times in the upper corner of that room & how I had tried to figure out what was causing it (it was not rhythmical or in any kind of pattern), but never did find a source, and I wondered if perhaps that had been a sign of the celestial beings who were conversing with my son.? Joshua didn't notice his sister or my stunned silence and went on, explaining that the angels know he wants to be the ring guy for Adam & Faith's wedding and he isn't going to heaven until after he's the ring guy, so he's glad his room is done, but he isn't going yet. His voice conveyed impatience, as though he couldn't believe these angels had actually come to him and expected that he might want to go to heaven NOW when they KNOW he's got something he still has to do HERE!? He told Megan & me, "I have told them I have to be the ring guy first.? They know that."? Megan replied, "Well, okay then!? How silly of those angels to think you'd be leaving sooner, I guess!"? Joshua nodded, happy that SOMEONE understood what was so obvious to him.I asked, "So you'll go to heaven after the wedding?"? "Yep!? I'm so excited to go! Heaven is the best place ever," was his response."How do you know that?" I asked."I just do," he confidently replied.? Megan added, "One more thing the angels have told him," and Joshua agreed with her.Megan asked if the angels will come back to take him to heaven and Joshua nodded, then informed his sister that the angels will come and say, "C'mon, Joshie, it's time to go," and he will answer, "Okay, but be sure to bring my stuffed animals!"? That made Megan & me laugh and then we joked with Joshua, asking which stuffies he would be taking with him.? He's pretty certain he has to take his two Om Noms (character from Cut the Rope), Swampy (Beanie Baby alligator), the dog that was given to him by his beloved pediatrician (that stuffed animal holds his oxygen every night) and Dino (WebKinz dinosaur).? He'd like to take them all, but understood that maybe the angels couldn't carry so much. Megan suggested letting me keep one of his Om Noms, but Joshua laughed off that idea, saying that no, the Om Noms have to stay together, but it's okay because I'll be coming to heaven right behind him, so I won't miss them.Joshua told us he can't wait to go to heaven so he can pull out his g-tube forever ("and it won't hurt to pull it out!") and then he can "go on a hungry rampage and eat all the food in heaven!"? We laughed at that and I joked, "But what about Megan?? By the time she gets to heaven, you'll have eaten everything!? Aren't you going to save any food for her?"? Joshie roared with laughter as he answered, "No!? She'll have to starve!"? Megan laughed as she sarcastically thanked her brother for caring so much.? He laughed as he replied, "You welcome!"? It was a good way to lighten the mood in the room and laughing with Joshua really is one of our favorite things to do.At the conclusion of our conversation, Joshua leaned against me, wrapping his little arms around my waist as he proclaimed, "I love you forever and ever, Mommy.? I love you SOOOOOOOO much!"? I assured him I felt exactly the same way about him.? Megan came over from her bed so she could hug her baby brother and we all sat together on Joshua & my bed, lost in our individual thoughts.? After a short time, I suggested that since we know he's not going to heaven until after the wedding, we should try to have lots of fun every day.? Joshua agreed with that idea and promptly decided he was going to play "the castle game" with Isaac.? Megan & I got him dressed & ready for his day (which was beginning at almost 5pm) and off he went, happy as could be.Do I think Joshua actually talked with angels in that hospital room?? Yes.Do I think God is giving Joshua control of when he wants to die?? No, because the Bible says our days are known before one of them comes to be (Psalm 139:16); however, it does seem that, for whatever reason, God is allowing Joshua to feel as though he is in control, and that is a huge gift to our family because we KNOW that Joshua is not afraid or worried about dying and that brings tremendous relief and comfort to us all.? Do I believe Joshua will make it to be "da wing die" at Adam & Faith's wedding (where he'll also be Adam's best man)?? Yes, I do.? It would shock me beyond anything I could explain if he died beforehand.? Do I think Joshua will die the night of Adam & Faith's wedding, after having fulfilled his goal of serving in the wedding?? Honestly, I don't know.? I sure hope not!? I have already prayed that if God is going to let Joshua attend the wedding, would He please grant us some time afterward before taking Joshua Home so that Adam & Faith don't go from the highest high (getting married) to the lowest low (losing Joshua) in a very small span of time?? Adam & I prayed about that together, in fact.? We know that God's timing is perfect and we will trust Him no matter what, but yeah, we're hoping that Joshua doesn't go to the wedding and then decide he's met all of his earthly goals and is ready to leave that night.? That would be pretty awful.As always, I am thanking God for this conversation that Joshua shared with me (and Megan) today.? As hard as some of the things he says are to hear, I am happy that we will always be able to remember the things Joshua told us about heaven before he ever left to go.? And you know, I think I will always look back & laugh at the memory of Joshua telling God's angels, "I don't THINK so!"? That's my boy, doing things his own way, in his own time.? I couldn't love him more if I tried.85 people this Sign My Guestbook | Read Tributes Written February 10, 2013 8:20pm by Kate Parker Joshua is still doing all right, but he's not completely well yet.? He has an occasional cough, though he tries to not cough since it makes his head hurt.? He's *very* tired all the time that he's awake, which I am attributing to the flu.? I am hopeful that once he's fully recovered from the virus, his energy will return.He's been having some scary moments where both his breathing & heart rate drop precipitously.? I'm relieved that he recovers each time, but it's still sad to see it happening at all.? No matter how slowly he moves toward heaven, the fact is that he's still heading inexorably in that direction & reminders that he's not stable are unnerving.59 people this Sign My Guestbook | Read Tributes Written February 8, 2013 12:15pm by Kate Parker Joshua is awake & acting like he is feeling A LOT better today. His nose is not stuffy, he's not coughing and he ate half of a scrambled egg. He says he feels "not sick anymore."? His head isn't hurting at all right now.If it weren't for the fact that he tested positive for influenza, I would be sitting here saying that he must not have actually had the flu because today is only day 3 and flu lasts longer than that, and for the past 2 days, he was SO ill that his pediatrician was warning me that he could very realistically die from this, so how can he be almost completely fine now? Miracle healing? I don't know. All I can do is report what is happening and what I'm seeing, and I'm sitting here listening to Joshua ask his sister to make him an omelet & giggling as he watches his brother play a game on the Wii. His coloring is back to his normal, he's not sniffling or coughing or gagging, and he's talking & laughing just like normal. I know God answers all prayers and this time, it seems He said "yes" to the ones everyone has been sending up for Joshua's healing. It's humbling and amazing and a big, honkin' relief! Almost all of the other kids are all on the upswing now, too. Only Bethany is still miserable. She developed a rash in an interesting patten that makes me suspect shingles. I'll update later on her CB page after I find out what's up with my girly.Thank you SO MUCH for praying for Joshie!!! ?? 68 people Written February 7, 2013 7:16pm by Kate Parker We're getting ready to go home.? Joshua has slept all but about 30 minutes today & had an episode where he stopped breathing, but by the time the nurse ran in, he had started back up again, so it was okay (minus our mutual adrenaline rush from the screaming alarm).? That had happened a few times yesterday, too, and now I am wondering if he has little episodes like this on a regular basis, but we just didn't know it since we don't have him hooked up to all of the monitors they use here when he's at home.? It's pretty much just evidence of what is happening with his brain stem, so it's not unexpected, exactly... more that it was surprising to realize that it's happening, as it makes us think that perhaps Joshua isn't as stable as we've been thinking he was.Anyway, thank you so much for all of the prayer support and good thoughts and well wishes.? I will continue to update on how Joshie is doing as he fights this flu bug from home.? I am thankful that I get to take him home where he can be comfortable and surrounded by everyone who loves him best.? It will be good for him and I will be relieved to be able to take care of my other kids, too, rather than having to ask my sick big kids to do it.76 people this Sign My Guestbook | Read Tributes Written February 7, 2013 2:18pm by Kate Parker The ped came in this morning, looked at Joshua & agreed that he needs to get out of here. What she said was, "He needs to get home, where you can all be together and he can draw strength from his family." She agreed with me that he needs to want to fight in order to get through this. We turned off his fentanyl drip at 11:30am and started a feed of Pedialyte.? If he tolerates 2 ounces per hour for 6 hours and all of his medications that are given via g-tube, then Dr. H will discharge Joshie early this evening.She's also going to start Bethany on Tamiflu to try to help her stay out of the hospital. Joshua started it yesterday and will continue getting it. I know there are some arguments against it, but for my medically-fragile kids, we are erring on the side of caution. They need all the help they can get in fighting this virus.Joshie is getting more gunky, but his oxygen is staying above 90% (minus the occasional desat) and his heart rate is not excessively elevated today like it was yesterday, so those are good things. Dr. S, who had to go out of town, called to chat with me about how my little guy is doing. She said she was really happy to hear that Dr. H is going to get Joshua home to be with his family and that we'll touch base each day to assess how things are going. She was encouraged that he was stable overnight, but warned that we still need to take this one day at a time and not get overconfident because as the illness progresses through its typical pattern, things could change quickly. As such, she wants the adults in the family to remain vigilant in watching how Joshua is doing. I assured her that I understood and that we will not let down our guard completely until Joshua is healthy again.?I am feeling SO thankful for Dr. H & Dr. S right now. I told Joshua that we're going to go home today and he nodded, then grabbed my neck and pulled me toward him for a hug. Then he settled down & went to sleep & has been sleeping soundly ever since. That confirmed for me that taking Joshie home & managing this illness outside of the hospital is the right decision for him, no matter how things turn out.55 people this Sign My Guestbook | Read Tributes Written February 7, 2013 10:33am by Kate Parker Joshua had a restless night without much sleep.? He spent almost an hour staring at the ceiling, but refused to tell me what he was looking at (I suspect his angels were visiting, as crazy as that may sound).? His breathing is liquidy-sounding.? You know how you'll hear someone breathe and you wish you could cough for them to clear the gunk you can hear as they inhale & exhale?? That's what he sounds like.? He doesn't seem to have any drive to cough, though.? If the nurses or I ask him to, he will comply with a weak cough, but he isn't spontaneously hacking anything up.? That is a bit concerning, but I'm hoping that as things progress, he'll get that urge to cough when he needs to.? He is very sad ~ gets teary from time to time ~ because he wants to go home.? He does not want to be here and I want to get him out as soon as possible because he just does not "fight" while here and we need him to want to get better if that's going to happen.? The doctor will be in to see Joshua in a few minutes and I am going to ask if we can start Pedialyte and if he tolerates it for 6 hours, will she let us go home.? I don't think I can stress just how dejected he is... his will to live is gone when he's inpatient and that freaks me out.? I want to get him home and give him every chance to fight this virus and recover.? He has a birthday in 3 weeks and a wedding where he'll be the best man & ring bearer in about 2 months... I KNOW he wants to celebrate those special days, so I am going to try to make it happen (I know, God is in control, but since He isn't showing me the future, I'm just going to believe it can happen and keep pushing for it). Written February 6, 2013 11:36pm by Kate Parker Joshua has had two episodes of his respiration rate going to zero. It appears to be a brain stem problem, not medication-related. Dr. S came to have a serious talk with me, saying she doesn't know which way this is going to go, but this virus could be a terminal event for Joshua. Because Joshua has made it very clear prior to this hospitalization that he wants to be at home when he dies, Dr. S's goal is to get Joshua home as soon as he is able to tolerate fluids in the volume he needs to maintain baseline hydration, but she made sure I understand that even if he is able to go home, that will not mean he's out of the woods and she will touch base with me every day as we support Joshua through this illness. No one knows for sure why his brain stem seems to be reacting so negatively to him being sick, but the working hypothesis tonight is that the added effort his body is going through to fight this bug is probably taxing all of his systems.I am pretty much in denial at this point, refusing to believe that after everything Joshua has gone through, he could lose his last fight to the stupid flu or complications from it. 59 people this Sign My Guestbook | Read Tributes Written February 6, 2013 5:49pm by Kate Parker Joshua's been admitted to the hospital due to influenza & dehydration.? Before anyone screams about how he should have gotten a flu shot, let me shut you down by saying that Bethany ALSO has influenza and she DID get the flu shot.? Our doctors are saying this is a strain not covered by the vaccine, so it's a moot point and I don't want to hear a lecture from anyone, please.? Thanks.He's currently sleeping & is getting rehydrated via IV. My stress level is currently a 9 out of 10 since not only is Joshua extremely ill, Emily, Sarah, Isaac & Bethany are also down with this virus, and Adam was diagnosed today with pneumonia (secondary infection from the flu).? David's hand isn't hurting him as much 2 days post-op and so far, he's not sick, but I'm not feeling confident he'll remain standing.? Charley & I are okay at this time and praying that we stay that way.? Megan is better, but still not at 100%.Please pray for Joshua to get through this without incident. Please pray for Bethany to not need hospitalization.? Please pray for my other children to get through this without secondary infections developing.? Please pray for Charley and me to not get sick.? And please pray for peace in the midst of this storm.? 78 people this Sign My Guestbook | Read Tributes Written February 5, 2013 9:26pm by Kate Parker Joshua is holding his own.? He sleeps a lot, but is generally pretty content when he's awake.? The "blowing trick" isn't really working that well, but it keeps him calm because it gives him something to do and that seems to be what he needs.? He knows it isn't helping, but he'll still ask me to blow with him at varying times throughout the day and I am glad he has the "trick' to make him feel more in control. Life here has been a bit crazy as of late. We've had illness affecting multiple kids that started by simultaneously taking out the oldest two (that hasn't happened since Megan & Adam were toddlers), one of my twins had surgery yesterday to place a skin graft after an accident involving broken glass, there have been lots of various appointments for kids & pets, a repair guy came to fix the fridge (still under warranty ~ yea), and the never-ending laundry, dishes & other chores that are perpetually on my "to do" list have limited my time online.? It's not like I have a lot to report, though.? Joshua is hanging on, we've managed to keep him healthy thus far amidst his sick siblings, and he's about the same as he's been.? Still desatting throughout the day & night, still needing some breakthrough pain medication each day, still spending most of his awake hours playing games with a sibling on his iPad, still making random comments about dying & heaven that take my breath away, still giving us all dozens of reasons to smile every day.? As time goes on, his world gets smaller & smaller, but it's okay because we're still in that world with him and we're happy to be here.? It is not at all ideal, but it definitely beats the alternative.56 people this Written February 1, 2013 12:02am by Kate Parker Last night, Joshua asked me to record a message to give his pediatrician and her nurse when I take Bethany in for her appointment tomorrow.? I did that and then Joshua began desatting, which is not at all unusual, but I decided to catch a snippet of it on video.? I don't know why; I just turned the camera toward his pulse ox & hit the "record" button. The commentary that I caught on tape was something I want to share, as it's a good example of the kind of things that come out of Joshua's mouth on a frequent basis these days.? It's one thing to write about this kind of thing; it's another to let you hear it for yourself. tells us regularly now that he's going to stop breathing and then he'll die, or that he's going to die and Bethany is going to die and then they will be able to play together in heaven.? While I am sincerely thankful that he is okay with knowing he's going to die (versus being terrified), it is still a shock to hear him chat so casually about it.? I think what really helped him to not be bothered about the idea of going to heaven was hearing that Bethie would be there, too.? Joshua is happy his baby sister will be with him. As awful as it's going to be for me to be without both of them, I do find comfort in knowing they will be together and will have each other so they won't be alone while they wait for the rest of the family to join them.59 people this Sign My Guestbook | Read Tributes Written January 27, 2013 8:57pm by Kate Parker Joshua slept 20 hours, then woke up happy and asking for a donut "as big as my head". How could we resist? Adam took his little brother to the store & brought home a dozen donuts (not the size of anyone's head, but still yummy).? Joshua has had a good day today.? The "blowing trick" (that's what he's named it) seems to help when he's feeling like he has to yawn excessively, which I'm thankful for.? I don't know if it's actually doing anything or if the improvement is purely psychological, but it doesn't matter to me.? Joshua is happier and that's what counts around here these days!? :)82 people this Sign My Guestbook | Read Tributes Written January 27, 2013 1:48am by Kate Parker The past two nights, in addition to having bouts of apnea that resulted in Joshua's oxygen levels dropping significantly, he has struggled with feeling as though he couldn't breathe and/or that he needed to yawn repeatedly (but couldn't, as he lost the ability to yawn many months ago).? It has caused intense distress and the first night it happened, he had a crying meltdown because he was so scared.? The first night, we (Megan, Adam & I) thought the emotional outburst was due to fatigue more than anything else.? Last night, though, Joshua stayed up past 2am repeatedly sitting himself up because he wanted to yawn but couldn't. He'd be laying down, then suddenly sit up and fight to yawn.? Over & over, this pattern repeated itself.? Finally, I piled pillows behind him so he could be inclined at a 45 degree angle and I adjusted his oxygen to blow more directly into his face.? That seemed to help a bit, enough that he was able to fall asleep.? Before nodding off, though, he told me he needed to see Dr. S and he wanted me to make an appointment for him to see her tomorrow.? I was surprised since he so rarely asks to see a doctor and I asked him, "You want to go see Dr. S?"? He confirmed that he did, telling me, "She can help me feel better."Uh oh.? I did not know what to do with that since I am well aware that there isn't a physician on earth who can fix Joshua's brain stem.? Still, I assured him that I would get an appointment for him to see his beloved pediatrician.? Then I grabbed my laptop & sent Dr. S an email (yep, at 2am) telling her what was going on and how Joshua wanted to see her.? I told her that I knew she couldn't fix this, but I hoped maybe she could give him some peace of mind by suggesting things like continuing to sleep partially inclined and using more oxygen or anything else that she could think of to toss out as a placebo. I also told her I didn't know if she was working today (Saturday) or not, but if she wasn't, would she please give whichever doctor was working in the clinic the scoop so they could help out.? I hit "send," turned my laptop off & went to sleep.This morning, Dr. S replied that no, she wasn't working today, but she would be in town and could meet us at 4:30 if that would be convenient for my schedule.? Yes, she drove into town on a day she did not work to sit down with my little boy and reassure him and do everything she could to bring him some peace of mind.? There aren't words adequate enough to describe how much this act of kindness meant to me today.? I've always known that Dr. S cares deeply about Joshua.? Today was one more confirmation of that.? Dr. S was wonderful with Joshua. She called ahead to her office and told them to send Joshua to the empty side of the clinic so there was no chance he'd get exposed to anything and then she called again to let us know she was on her way and to double-check that Joshua was in the "clean" area. She was so sweet with Joshie... they talked and he held his arms out for a hug (which melted her) and she quietly explained to me that the reason he feels like he needs to yawn all the time is because he experiences hypercapnia ~ too much carbon dioxide in his bloodstream because his brain stem is not triggering him to breathe more rapidly and deeply in response to CO2 building up, and Joshua isn't breathing off the CO2 like he should.? That is why he feels like he wants to yawn all the time ~ yawning is a response to increased CO2 in the blood. Unfortunately, he lacks the ability to yawn anymore, which is why we've got a dilemma. She taught Joshua how to blow repeatedly as an alternative to yawning (short inhalation followed by strong exhalation, repeated quickly 6 times in a row ~ she chose 6 repetitions since he's 6 years old, which Joshie liked). The blowing helps to get some of the excess CO2 out, which then makes Joshua feel a little better. She agreed that keeping him inclined when sleeping is fine if it makes him feel better and she wants us to try using either a cannula or a non-rebreather mask (she gave me one for him) so that Joshua gets more oxygen with each breath since his respiration rate is so slow, especially when he's sleeping (typically just 8-10 breaths per minute). We chatted for 45 minutes, during which time Dr. S was just so dang lovely with Joshua that I had to hold back tears a few times. He adores her and she was SO kind to come in just to spend time with my little boy so she could reassure him and help him to not be so panicked about this new development with his breathing. Toward the end of the appointment/visit, Joshua was fading & zoning out and Dr. S commented on how this trip had really worn him out. I told her, "Oh yeah. He'll sleep from the time we put him in the car until tomorrow. He gets wiped out from any outing." She understood, telling me it was probably too much stimulation for his brain to manage now.? When I got home, I looked up what hypercapnia is since I had no real understanding of why it was significant when Dr. S mentioned it during our talk. Because Joshua was right there, she just sort of glossed over the term, reminded me of how there are multiple "triggers" that make a person breathe & then kept going, but I sensed that the term was important. Once I read about hypercapnia, I came to understand what is going on."Hypercapnia normally triggers a reflex which increases breathing and access to oxygen, such as arousal and turning the head during sleep. A failure of this reflex can be fatal."? (quote from Wikipedia)When you've got too much CO2 in your blood, the respiratory center in your brain stem typically increases the rate & depth with which you breathe in order to increase oxygen intake & decrease carbon dioxide in the bloodstream. Joshua's brain stem, however, is not working perfectly, so he doesn't breathe any faster or deeper when his CO2 level gets too high. He does, however, get very sweaty, confused/zones out, says he can't see very well, acts like he doesn't hear us very well & has shortness of breath ~ all of which are symptoms of CO2 toxicity.? Once he begins satting better, everything chills out, an indication that his brain stem is once again "behaving" and sending out the correct signals to the muscles that make him inhale & exhale.? Then he's fine until the next episode occurs.So... yeah... now I understand WHAT is happening. I also think I understand WHY it is suddenly happening now. The respiratory control center is located in the brain stem, specifically, in a portion called the medulla oblongata, which is attached to the spinal cord. Joshua's spinal cord is severely stuck (tethered) in scar tissue, so it can't move freely and when he grows, his spinal cord, which isn't floating freely inside his spinal column like it should, gets stretched. This stretching creates downward tension on his brain stem. Joshua recently had a growth spurt, so the onset of the breathing problem we are seeing makes perfect sense to me. The respiratory center of his brain is getting stretched and what we are seeing as a result is the loss of the reflex that should compensate for a higher-than-normal level of carbon dioxide. Yes, it makes me feel sick to realize what is going on and to know there is nothing I can do to stop this from happening or fix it. I do wonder if it is possible that his brain stem could "get used to" the new degree of being stretched and he could stabilize again for awhile. I have no idea if that is realistic or not, but it's something to hope for tonight when I am feeling sad.I really hate getting hit when I never saw the blow coming. It hurts so much more when it is unexpected.? It is so difficult to learn there is progression/further deterioration in Joshua's condition. I realize that, logically, we know it's going to happen, so it shouldn't be a big shock when things go further downhill. But emotionally, it is REALLY hard to come to grips with. One step further down the road is one step closer to him leaving us to go to heaven. I'm not ready for that. I'll NEVER be ready for that because even though it will be wonderful for him & I am happy that he's completely relaxed about the idea of going, it will be horrible for me & the rest of my family to not have Joshie here with us anymore. As such, I don't like the reminders that it's getting closer.64 people this Joshua Parker's Journal Written January 25, 2013 4:17pm by Kate Parker Joshiebear is still doing okay.? He's been having some runs of desatting during the night (lots down in the mid-70% range last night), but when he's awake, he's feeling good, not hurting, and bringing joy to our lives simply by being here.He told Megan, Adam and me in a matter-of-fact voice, "Beppy is going to die."? I nodded in agreement, saying calmly & matching my tone to his, "Yes, she is."? He asked if she was going to go to heaven before him and I told him that yes, I thought there was a good chance she would do that.? He didn't like that because, as he said, "I want to meet God and Jesus first!"? I told him that God gets to choose who comes to meet Him first, so it's not up to me.? After a few minutes of contemplating this news, Joshie decided it would be okay if Bethany goes to heaven first, but he's certain he should get to go second and the rest of us have to wait until after that.? Then he started listing all the great things he and Beppy will get to do in heaven together:? swing at the park, ride bikes, run around, climb trees, dig for buried treasure, play hide & seek and other games. Honestly, Joshua is completely jazzed that Bethany is coming to heaven with him.? I guess that means we've done a good job of making sure he isn't scared about going to heaven because to listen to him talk, you'd think he was heading to Disneyworld and now that he knows his baby sister is coming, too, and may even get to go ahead of him, he is SO excited.? I know heaven will be incredible and super-awesome-fun for him & Bethie... I DO know that... and I AM relieved that he's not apprehensive or scared to go.? It's just sometimes painful for me (and Megan and Adam) because we know how badly we are going to miss him when he's not here anymore.Joshua has also told us that even though the angels said his room is almost ready, he is not going to heaven until after he's been "da ween die" (the ring guy) for Adam & Faith's wedding.? That will take place at the beginning of April, so Joshie asks us how many days until the wedding because he is going to heaven after he's "da ween die".? I am fervently praying that if God is going to allow Joshua to be part of the wedding (which would be a huge answer to our family's prayers), He will also allow Joshua to live for some time afterward.? It would be pretty awful to have Joshua die the day Adam & Faith got married.? I want to say I know God would not allow that to happen, but I know things like that DO happen in life, so I'm specifically asking God for a different outcome.? Between you and me, I don't know if Joshua can actually "will" himself to live for a specific event (though I've heard stories of people who did just that), but I think that if it's possible, he's determined enough to make it happen, which will make Adam & Faith ultra-happy.66 people this Sign My Guestbook | Read Tributes Written January 20, 2013 9:54pm by Kate Parker God is good, all the time, and He is gracious to me during dark times.? Evidence of this comes in the form of Joshua's head pain being minimal.? He has hours with zero pain, but when his head does begin to hurt, it is mild and he is only slightly bothered by it.? A small dose of oxycodone ~ well, small for Joshua, LOL.? His "small" dose would kill me, quite literally ~ eases the pain and he is able to continue whatever activity he wants to do.Thank you, Lord, for this mercy!I can't really update on what Joshua's been doing the past couple of days because I have been at the hospital with Bethany, but from what I heard, he woke up earlier than usual yesterday, saying he was awake because he "had a mission."? Adam bought Joshie an updated version of a game and Joshua's mission was to beat the game.? When I heard about this, I could easily imagine his sweet little face concentrating hard as he tried to win the game.? He's so cute... seriously adorable. I missed being with him and not being part of the sweet things he did the past two days. I'm so thankful he did well in my absence, though, as that allowed me to focus fully on Bethie, which I needed to be able to do. God knows my needs and meets them and although I wish circumstances were different, I can still recognize the gift for what it is.? As hard as it is having two kids at the end-stage of their medical conditions, it actually *could* be worse if Joshua were unstable right now.? I am thankful that he's not and am trusting that God is going to keep him that way until Bethany is safely with Him. 76 people this Sign My Guestbook | Read Tributes Written January 19, 2013 1:22am by Kate Parker Joshua had his first bout of head pain that necessitated a breakthrough dose of oxycodone today.? It wasn't severe pain, though, so... sigh... I don't know.? Just trying to not feel too sad or distressed or read too much into it.? After the day we've had with Bethany, it isn't going to take much to push me over the edge.He was very happy that Megan got her puppy today, though, and has kissed Loki and told him, "I wuv you, Woki," multiple times, which is pretty dang adorable.? The puppy seems to sense that he needs to be gentle with Joshua, as he sits quietly in Joshie's lap without squirming at all, content to be hugged and loved on.I know... short update.? I apologize for that.? Go read Bethany's journal entry (visit/bethanyparker) to understand why I don't have words to write more than this on Joshua's page tonight.? I almost didn't write anything, but wanted to document the head pain since it's been two weeks without it. I guess it was unrealistic to hope it could last forever, but silly me, I still hoped.Written January 16, 2013 10:06pm by Kate Parker Joshie is still here, still as stable as he gets and has decided he needs to bring multiple stuffed animals with him when he comes downstairs from his room to the family room each day.? He then distributes the stuffed animals to people and sections of the room, where they keep watch on everyone.? I am currently holding an Om Nom (from "Cut the Rope") and Joshua periodically checks to make sure Om Nom is still resting comfortably on my lap.? It's pretty darn cute and we all enjoy playing the game.Megan (my oldest) is getting a German Shepherd puppy this weekend and Joshua is VERY much looking forward to holding and petting the puppy.? He loves baby animals and keeps saying, "Oh, how CUTE!" when he is shown a picture of the puppy.? I think it will be sweet to watch him with the dog.? It's something happy to look forward to, which makes me smile.Joshua has been sleeping later these past few days, which has made Charley pretty sad because he has had to leave for work before Joshua wakes up (he leaves at 4pm) and Joshua is asleep before Daddy gets home (at 4-5am).? As a result, they aren't getting to spend any time together or even see each other for days at a time.? I am going to take Joshua to Charley's work later tonight (it's only 2 miles from our house) for a short visit.? Joshua is feeling pretty good and has said he wants to take Daddy some of the licorice that Adam bought, so that will be our big outing for the week.? Yes, going out tonight will wipe him out for the rest of the week, but it will be worth it so Charley can see his little boy for a quick visit.Anyway, that's about it for today.? I have two little boys waiting patiently for me to buzz their hair so they can shower and then go to bed, so I'll end here.? Thank you for your prayers for Joshua.? My family is truly grateful for the support of so many and we are happy that God is answering prayer and allowing us this time with Joshua being pain-free and *happy*.? It's a huge gift that we will always be thankful to have had.73 people this Sign My Guestbook | Read Tributes Written January 13, 2013 12:28am by Kate Parker I know readers want an update on Joshua, but I don't know what to write.? He's the same: tired, quiet, still smiling & enjoying little things like playing games on his iPad.? He still says his head doesn't hurt at all except occasionally, when he falls down and the jolt of hitting his knees on the ground seems to radiate up to his head and causes a lot of pain; at those times, he needs some extra oxycodone.? The things he was miraculously able to do on January 5th are things he is not doing anymore.? I guess that was just a really special day that the Lord blessed us with.? I'm so glad my friend was here for 4 days prior to that day so she can vouch that I'm not crazy for saying he could suddenly do things he hadn't been able to do for months.? :)?? Anyhow, he's back to what was "normal" for him prior to that awesome day with the exception of continued pain-free status.? That remains pretty amazing and none of his doctors has any explanation for how it's possible that Joshua isn't hurting.? I do, but it doesn't jive with medical science (God rarely does! LOL).Our days with Joshua are pretty much "Groundhog Day" around here.? He gets up around the same time every day (3-5pm), engages in the same activities each day, gets the same meds at the same time each day and goes to bed at about the same time every night (midnight).? There are occasional differences in the routine, but for the most part, that's how he spends his days.? Each night, we ask him if he is going to heaven tonight and thus far, he has told us, "No."? I'm not really sure what I'll think if the night comes where he answers, "Yes," but I'm not wasting time worrying about it.? Some nights, he has a LOT of apnea episodes and the alarms go off frequently.? Other nights, he has no episodes.? There's no rhyme or reason that I can figure out.? As such, I'm no longer trying to make sense of it or see if I can "get a feel" for what it might mean.? Yes, I am learning to just let go and not try to analyze everything to the nth degree ~ at least with Joshua.? I figure, what is the use?? Nothing he does makes any sense at all anymore!I'm sorry this isn't a great update, but like I said, I don't really know what to write.? I just didn't want to leave those of you who are reading about Joshua wondering if there was something important going on that I hadn't shared.? Nope; there's not.? If something urgent happens, I will post or I will have my oldest daughter post something for me.? For now, though, things are as stable as they get around here, which makes for a nice reprieve for however long it lasts.67 people this Sign My Guestbook | Read Tributes Written January 8, 2013 11:12pm by Kate Parker I really don't know what is going on.? We were in a fairly stable place until after Christmas, when Joshua started going downhill.? Then he started talking about conversations with angels and how he was going to be going to heaven soon because his room would be ready.? Then he had a decent day, followed by an amazing, GREAT day ~ the picture on the Welcome page was taken the evening of that marvelous day and you can SEE how good he was feeling ~ followed by a return to the quiet, not-very-active, not-wanting-to-eat-or-drink-much little boy that we had seen post-Christmas.? The only difference between the Joshua we saw after Christmas (and before his GREAT day) & the Joshua we have now is that his head pain is still gone.? He occasionally will say his head hurts, but by the time we draw up a breakthrough dose of oxycodone, he says, "Nope, it isn't hurting anymore," so we don't end up giving him the extra medication (he is still getting all the regular doses of his meds).? I can't explain it.? As far as I know, there is no medical explanation for why a child whose pain has been chronic & severe for several years suddenly is pain-free despite no change in his medication schedule.? I attribute it to God & His mercy and am thankful for this reprieve for Joshua and the rest of my family.? It really has been wonderful to have him not in awful pain all day long every day.Megan and I were talking about what is going on with Joshua ~ I told her I needed to update caringbridge but I had no idea what to write other than, "I am so confused!"? She gave me an analogy that I agreed fit what we are currently living out with Joshua, which is this:? We are standing at the top of a mountain, thinking, "Hey, this was worth the climb! It's beautiful, it's peaceful, it's actually not too bad a place to be."? We aren't looking at the steep sides of the mountain or thinking about the dangers that surround us. But then a kiddo goes over the edge and falls down the mountain, and suddenly, it's not such a great place to be.? Megan told me, "Mom, I think we are getting the best of Joshua before he leaves."? We're on that mountaintop, catching our breath from the long climb and feeling that we're getting a small break from everything.? But we can't help but feel that at any moment, Joshua could start falling down the side of the mountain and that will be it.I don't know how much longer he will live and I really am *not* trying to dramatize anything as I share his story.? All I can do is report what we are hearing & seeing & experiencing with Joshie.? I know it's confusing.? Believe me, my family and I are VERY confused and not knowing what is going on with our little boy is actually stressful. Despite his head pain being gone, he does not appear to be getting better.? Not in the slightest. He continues to be more tired, less interested in participating in activity, less able to process information and more quiet over the past couple of days. But the sense that he is very close to dying, which we all definitely felt was the case last week, is not really present, either.? As such, my family members & I are trying to go back to just living one day at a time, enjoying the hours that Joshua is awake & interactive, and waiting to see what God is working out.? The child who is writing his own book seems to have decided to add another chapter rather than the words, "The End."? Admittedly, I am totally okay with that.Written January 7, 2013 12:13am by Kate Parker I spent some time cuddling Joshua as he slept today... curled up behind him, kissing him, holding him. He woke up a bit after 3pm. He quietly played a fishing game with Sarah (sister, not Auntie) and then played legos with Isaac and then played on the iPad with Emily.? He ate some ice cream. Today has not been like yesterday.? Yesterday, Joshua was busy, active, talkative & laughing a lot.? Today, he is much more quiet and reserved, but still happy. I am trying to stop myself from slipping into denial, but honestly, I don't know how to avoid it. Despite writing about it for so long, I really cannot believe God is actually going to take Joshua from me. I mean, I can *logically* believe it, but emotionally? Totally not happening.On Facebook, I had someone ask me if Joshua had taken a turn for the worse.? I wrote back, "I don't know how to answer your question. Things are different now. Since Christmas, he has been going downhill. Then, these past 2 days, he has "bounced back". Joshua is telling all of us that he will be going to heaven really soon. We have no reason to disbelieve him and based on how he is behaving and what we are all seeing (as a family and with a friend here who is watching all of this unfold), none of us would be surprised if he died today or tomorrow or a week from now. He's not laying in bed struggling to breathe... there's nothing obvious that says, "Yep, this is it." So it's hard to know how to answer."My friend, Sarah, who has been here since December 31st (and, sadly, will be going home tomorrow) wrote, " I would add they are reporting what they are experiencing and witnessing...no one has any answers.... unfortunately...but the family is profoundly sad at times....only Papa knows the day and the hour....it is difficult to be in this position, like waiting for a birth almost. Only one you don't want to experience..."I thought that was a wonderful analogy.? Really perfect. We see signs that things are getting close to the time Joshua will go be with Jesus, but just like with impending labor, where it can be difficult to know if the pangs you're feeling are going to lead to the baby arriving tonight or in two weeks, that is what we are experiencing.? All signs point to the end being very soon, but we have no real idea when it is actually going to happen. Things Joshua has said/done over the past few days:Told us, "Two angels will come tell me, 'Joshua, your room is ready!' Then they will grab my arms and take me to where heaven is."? David, Isaac & Joshua were discussing why Joshua gets to go to heaven first.? David said he wants to go first and Joshua laughed and told him he can't.? Isaac piped up, "Then I'll just sneak in the back door!" Joshua told him, seriously, "There's only one door into heaven.? There is no back door to heaven, and the door has to open for you to go in."He informed everyone in the truck (on the way home from getting Slurpees at 7-11) that two angels were outside each window of the truck, watching him.Told us angels are outside rather than inside because they watch us when we are out doing things.He hasn't gone to heaven yet because the door hasn't opened.? I think he is talking about a spiritual door versus a literal one.? Like God has to give permission and then the angels can come in to escort a child to rmed us that you have to tell the angels your name.? "Like if your name is Parker... wait... what is your real name?"? "It's Kate."? Picking up where he left off... "Okay... then you have to tell the angel, 'Hi. My name is Kate.'" He said you have to tell them your name so they know who you are.Told us, "Angels can't be killed. They are invincible." Told us, "My room will have a picture of me hugging Mommy so I can remember hugging her because I love her so much."Yesterday, January 5th, Joshua did the following things that he hasn't done (or been able to do) for ages:~ Came downstairs REALLY happy and was hugging everyone. Then he played poker with the kids.? His head wasn't hurting at all.~ Ate dinner with the family, sitting at the table.? He ate a roll & a bite of cheeseburger & drank 4 ounces of root beer from an open cup.~ Walked with the heels of his feet hitting the floor for over 50% of his steps.? His back is so tethered that he hasn't been able to do that for a long time, so why he suddenly can is interesting, to say the least.~ Wanted me to carry him and wrapped his legs around my waist, holding on by squeezing his legs together.? ~ Wanted to go to Wal*Mart (got ice cream, legos, danimals).~ Wanted to go get a Slurpee.? Drank the entire thing.~ Ate an ice cream bar, 2 small pieces of pumpkin cake, a danimals (strawberry).~ Ran to get toys.? His version of running, but it was still running.~ Happily took pictures with everyone.? Smiled for every single one.~ Played legos for hours.~ Did not hock & spit except a few times all day.~ Was a lot more animated and chatty and active than usual. Had a lot more energy.~ Wanted to cuddle with me for longer than usual. Hugged me over & over & kissed me repeatedly.? Said, "I like kissing you.? I never want to stop kissing you."? Rocked while wrapping his arms around my neck.? Held me with his body facing mine and legs wrapped around my waist (hasn't been able to do that for a LONG time).I know there were a few other things (my friend, Sarah, and I were talking this morning and we remembered a few that I hadn't written down), but I can't remember them right now as I write this (of course!? Sleep deprivation in action!).? Anyway, the point is that we've been watching Joshua decline ~ obviously and significantly ~ since the day after Christmas, so to have everything that happened yesterday occur was really.... unnerving, actually.? Maybe it should have brought me peace, but it didn't.? All 5 adults in the house were perplexed and constantly raising an eyebrow at yet another thing Joshua was doing or saying during the day.? Yes, we enjoyed the time with him ~ it was absolutely beautiful to have the Joshua of long ago back for a visit ~ but it was unnerving because we've all read enough to know that dying people often rally for a good period right before they die.? It was difficult to see Joshua rallying (even while simultaneously loving how active & happy he was being) & listen to his chatter throughout the day about angels and how he's going to heaven really soon and not feel nervous.Today, he is much more like he's been for the past week in terms of quiet mannerisms, reserved nature, lower activity level & not really interested in eating or drinking, but he's still not in pain. It is a wonderful thing to ask, "Joshie, how is your head?" and hear him reply, "It doesn't hurt AT ALL!? It hasn't been hurting all day, Mom!"? Talk about a gift from the Lord! ?80 people this Sign My Guestbook | Read Tributes Written January 6, 2013 1:08pm by Kate Parker Thank you for praying for us.? Please continue to cover my family, as Joshua has been talking A LOT about leaving.? He is peaceful, he is smiling endlessly, he is HAPPY in a way we haven't seen in probably over a year, and he is doing things he has not been physically capable of doing and/or has desired to do in months.? We made a list last night of everything he'd been doing that day that he has not been able to do and got to 17.? He is seeing angels and hearing them talk A LOT and he is freely talking about going to heaven and how two angels are going to come to him and say, "Joshua!? Your room is ready!" and then they will grab his arms and take him to where heaven is.? As an afterthought, he tells us, "Then the angels will come back for you."? He told Aunt Sarah that an angel would come for her, too.? :)? Yesterday, when I asked him if he knew when he was going to heaven, he thoughtfully replied, "Tomorrow.? Probably."? Sarah & I kind of just looked at each other with that one.? Last night, Joshua told Megan that he had asked God to tell the angels to tell HIM when it was time to go.? He still assures us he will tell us when it's time.? I am praying (begging) that we will be given the opportunity to hear him tell us he loves us one more time when the moment for him to leave comes.75 people this Sign My Guestbook | Read Tributes Written January 5, 2013 10:32am by Kate Parker Megan, Adam, Emily, Sarah (my friend), Joshua & I went to bed at the same time last night.? After all of the "good nights" and hugs and kisses were complete, I was snuggled under the covers, cuddled up against Joshua with my arm around him, just about drifting off to sleep, when a deep belly laugh startled me.? Before I could say or do anything, Emily's voice came out of the darkness, asking, "Joshua, what are you laughing about?"? "It doesn't matter," he replied cheerily."Um, this time, it really DOES matter, Joshie," Emily countered."I don't remember," came the answer in a "Sorry, not gonna tell you!" kind of sing-song voice.? I spoke up, asking, "Joshie, what were you laughing about?"? "I was just talking," he told me.? "To the angels?"? I asked since I knew he hadn't been talking to any family member.? "Yes," he answered.Emily, who doesn't typically sleep in the same room as Joshua, asked with some excitement, "Are the angels here, Joshie?"? When her brother told her they were, Emily asked, "What are they saying to you?'? Joshua hesitated for a long moment and I had an insight, so I gently and quietly asked, "Joshua, is it time to go to heaven now?"? His little hand reached up to hold my arm, which was wrapped around his waist, and he answered with certainty, "Not yet.? The angels say it's not ready yet."? I asked him, "What isn't ready?? Your room in heaven?"?? "Yes," came the steady reply.? "It's not ready.? The angels say it's almost ready, though."I couldn't speak.? I hugged Joshua tightly, kissed his head, then got out of bed to go to the bedroom next door where Sarah was still awake so I could tell her of this conversation.? Joshua was now talking with great enthusiasm to Emily and I wanted my friend to listen because honestly, I can relate the conversational details to the best of my ability, but witnessing it is a whole different experience.? Sarah & I stood in the doorway of the bedroom next to Joshua's room and quietly listened, not saying a word, as Joshua explained what his room was going to look like and how great heaven is going to be.? During the course of the conversation, he told Emily that when the angels told him his room is almost ready, that is what made him laugh (the laughter that we had heard).? He told her that he will go to heaven soon, after his room is ready.He is so excited.It's like he has a ticket to Disneyland and he's counting down the days before he finally gets to go.? This little boy, who is so quiet and reserved for most of his awake hours now, was animated & chatty & giggly & SO full of happiness as he excitedly told Emily what the angels were sharing with him about heaven.? And Emily was amazing ~ sharing her baby brother's excitement, agreeing with him that oh yeah, it's going to be awesome and saying things like, "I am so jealous that you get to go first!? I want to go, too," which made Joshua laugh and then answer, "You can't go yet!? The angels say your room isn't ready, too!"? Emily asked what her room was going to look like and he laughed as he told her, "It's a surprise!"Joshua got quiet after that for a brief moment and Emily asked, "Are the angels still here?"? He answered, with dejection in his voice, "Noooo, they're gone now."? Then he brightened a bit and said, "They say they're working on my room.? I think that is why they have to go."? When I crawled back under the covers, Joshua told me that the angels were working to finish his room, saying, "ALL of them are working!"? I hugged Joshua and told him I thought it was great that the angels were finishing his room for him. Then I snuggled against him once again, kissed his cheek (and received a kiss), told him I love him and will love him forever, listened to his sweet, tired voice tell me, "I love you forever, too.? Mommy mommy mommy... I love you," and then I closed my eyes, knowing the time of being able to hold Joshua as he sleeps is getting shorter.? I feel joy for the healing that is coming for him, but the depth of that happiness is equally matched by the sorrow I feel for the pain that is coming for the rest of us once Joshie is gone.................On a different, but related, note, for the past 2 days, Joshua has had periods of time where he has felt no pain whatsoever.? The first day, Megan told me she believed Joshua was being supernaturally protected.? Yesterday, Joshua was cuggling in my lap & he looked up and said with complete wonderment, "My head isn't hurting at all!"? I smiled, told him that was wonderful, then asked if he thought maybe God was making his head not hurt.? He nodded and said, "Yes, He is."? I told Joshie I thought maybe God was making his head not hurt so he could see what it was going to be like when he gets to heaven and never hurts ever again.? Joshua smiled a HUGE smile, nodded and said, "I know He is!"? The pain-free periods are not long-lived (a couple of hours), but the fact that they're happening at all is truly miraculous and there is no medical explanation for it.? I am convinced God is giving Joshua the respite from pain as a gift to my entire family.? Joshua gets a taste of what heaven will be like as far as him not having to hurt anymore and the rest of us get some glorious hours with a Joshua who is HAPPY because he isn't in pain.? It's as amazing and wonderful as you could imagine.? It will also be a memory that helps bring us comfort once Joshua is gone... knowing that he isn't hurting versus hoping that he isn't.? And yeah, the thought has passed through my head that if God can make Joshua pain-free here (on Earth) for a few hours, He could easily make him pain-free here forever, but I know that His ways are not my ways and whatever plan He is working out doesn't have to make sense to me, even though I'd really like for it to. I don't know why Joshua can't stay... I don't know why God won't simply heal him... but I still believe that even though it's going to be completely awful for those of us who love Joshua, God's plan for him is better than my own, and I don't have to like what is happening to trust Him.Written January 3, 2013 11:14am by Kate Parker Sharing what I just wrote on my Facebook wall because I don't have the time to write up a proper journal entry but would still appreciate prayers (the Sarah I reference is not my 11 year old daughter, but a very special friend who is visiting from Oklahoma):The beautiful & awful continue to collide... Joshua started having seizure-like activity yesterday in his sleep. Then, when he woke up, he was "woozy" (his word) & asked to be carried & was off-balance when he tried to stand. His head was hurting everywhere (versus just on top like always), especially the back of it (hello, chiari). He needed several breakthrough doses of oxycodone, which is significant since A) he hasn't been needing any and B) he was only awake for 7 hours & got scheduled doses in that time. Then, after Sarah, Megan & I got back from watching Les Mis, Joshua began desatting into the low 80's/high 70's and encouraging him to breathe did not work to get his oxygen level back up. Each time he went down, we had to wait for it to come back up on its own. Hello, central apnea that is 100% brain-stem-dysfunction-related. In order to get any sleep last night, I finally put his parameters way down so his pulse ox would stop alarming. At one point, his heart rate was 26 (prior to going to sleep; Adam was trying to play with him to get it up again ~ you know, by making Joshua laugh & be more active in the bed ~ but it wasn't responding). I knew we all knew this time would come... the time where we would begin seeing the signs that his brain stem is getting squished again... apparently, that time is here. I have no idea how quickly this will progress to where we know this is leading. I know God is here and He isn't going to drop any of us and that is very comforting. It doesn't make this hurt any less, though. 63 people this Sign My Guestbook | Read Tributes Written December 30, 2012 1:01am by Kate Parker After changing his medication doses back to what they were & giving him a couple of days to readjust, Joshua is once again feeling as good as he gets.? He slept until a little bit before 6pm, had a bath, and has been cheerful and, though quiet and more reserved than usual, he has not needed extra pain medication at all today.? It's a most-welcome blessing.Thank you for the lovely, supportive comments and for sharing my disbelief that someone would snark at me about either Bethany or Joshua. You soothed my hurt & with as raw as I am feeling right now because of the seriousness of my little girl's condition, I am deeply grateful to everyone who came alongside and hugged me with their words and assured me that the majority of you DO understand what it is I am trying to express when I share my heart through my journal entries. Thank you for that.? Caringbridge does not allow blocking of people, unfortunately, but that's okay.? God uses all things and He won't allow this situation to be wasted.? I'm not going to concern myself with how He will use it; it's enough for me to know that He will, in His time.? And, as I said, I am so thankful for the outpouring of comfort tonight.? I needed it.? Thank you for caring the way you do.Joshie asked me last night if Beppy was going to die.? I told him that she is very sick and yes, she could die.? He let out a little sad noise & said, "Oh, I don't want her to die!"? I told him, "I know.? I don't want her to die, either."? He said, "No," in a 'you're not understanding, ' voice, then went on to explain, telling me, "I want to go first.? I want to meet God and the other God who isn't God but is God's Son."? I asked, "You mean Jesus," and he nodded in affirmation.? That surprised me because we have never tried to explain the Trinity to Joshua, so how did he know that God is God and Jesus is part of God while being a separate entity?? I believe the angels explained it to him and it brings me a sweet peace to KNOW where my little boy will be going after he dies.Anyway, Joshua told me that he wanted to go to heaven first and then Beppy could come second (he says "two" instead of "second" because he can't use ordinal numbers very well anymore) and then I could come third ("three").? I gently teased, saying, "Hey, I thought I got to come to heaven second after you!? That's what you said before!"? He smiled, hugged my neck and said, "I know, but I love Beppy and I think we go to heaven together!"? All I could muster as a reply was, "Wow!"? Joshua smiled, nodded and asked, "Don't you think that will be great?"? I took a deep breath before answering, "Yes, Joshie, I think it will be great that you and Bethie can play together in heaven.? That will be fun for you both."? He agreed, saying, "Yeah!"? I asked him, "What will you play?"? He thought for a moment, then told me, "We will play a pirate game.? We will hunt for cwedure (treasure)."? I told Joshua how much fun I thought he and Bethany would have playing that game.? Then he told me, "I think we will swing, too.? And then I will tell Bethany, 'Hurry up, Slowpoke!'"? (he started giggling as he said that).? I giggled, too, then asked, "Why will you call her that?"? He answered, "Because she's tiny, so she will run slower than me.? So I will tell her to hurry up, Slowpoke, because we have to go meet Mommy!"? At that moment, I was reminded of the email I received several months ago from someone I do not know who told me about a dream she had where Joshua was in heaven, playing on a playground, and he'd been with a little girl with blond pigtails and he ran off because he said that Mama would be here soon.? Joshua then said, "In heaven, Beppy and I will both not have ports.? And we won't have g-tubes.? And we won't have wheelchairs.? And we'll both run.? And when Beppy goes, "Uh!" I will know what she is saying because she will be able to talk!"? I agreed with him, telling him, "You're right; you two are going to have so much fun playing together."? He nodded and said, "I know.? I get to go first and then Beppy can come with me."? It is only by the grace of God that I don't fall to pieces when Joshua talks to me like this.? I can't recount these conversations with anyone without crying, but at the time Joshua and I are talking, God gives me the ability to converse with my son as easily as if we were talking about where to go out to eat for dinner.? It's a gift from the Lord that I am SO thankful for.A couple nights ago, Megan and I were chatting about Bethany and Joshua and Megan mentioned that we probably should look into buying an urn for Bethany since we are probably going to need it.? We sat together, looking at the website where we purchased Joshie's urn, and Joshua came over to see what we were doing.? I told him we were looking at pretty boxes and he recognized his, saying, "That is the one I like!"? I agreed that it is beautiful and he said, "We have that, right?"? I assured him we did.? He asked if he could see it, so I sent Emily to get it off the shelf in Charley & my bedroom.? Joshua looked it over carefully, admiring the pretty fall scene that wraps around the oak box, then turned his attention to the "boxes" on my computer screen.? He pointed to one and said, "I like that one.? It has butterflies.? Beppy likes pink."? No one had told him the box would be for Bethany and I honestly don't think he knew what we were looking for (he hadn't overheard Megan and my conversation; I am 100% certain of that).? I told him, "Yeah, I like that one, too."? Joshua began to walk away, then turned back and asked, "What goes in those boxes, anyway?"? I paused for a moment, thinking of how to answer him, then said simply, "Really special things go in the box."? He tilted his head as he asked me, "Will you put something special in my box?"? All I could get out was, "The most special thing I can think of, Baby."? On the evening of December 26th, he asked Megan & me when his birthday is.? I told him, "March 2nd."? He asked how many days that was and I told him, "66." He wanted to know, "Is that a long time?"? Megan answered, "Yeah, Buddy, for you, it is."? He asked if his birthday could come sooner.? He wasn't asking if he could have a party or presents, but if I could make March 2nd come faster than 66 days.? I sadly told him that no, I couldn't do that.? He sighed dejectedly, then said, "Okay."? I cuddled next to him and quietly said, "Joshie, we will celebrate your birthday and it won't matter where you are.? If you're in heaven, we will celebrate your birthday and if you are here, we will celebrate it. March 2nd will always be your birthday, Baby."? He rolled over to his back from his side and hugged me.? That is the reassurance he wanted.That is what my days are filled with now.? Beautiful mingling with awful.? Sweetness mixed with pain.? Worry alternating with peace.? I have spent today crying on & off and desperately, determinedly searching for God in the events that are unfolding.? I don't claim to have ANY idea what His plan is.? It *seems* as though life could end soon for both Joshua and Bethany, but I am not going to say that I think they are both going to die soon simply because I don't know, and it would seem pretty melodramatic to make that kind of announcement and have both of them go on to live for months.? What I AM aware of is that both Joshua & Bethany have become much more-fragile and Joshua, especially, is tired in a way he hasn't been before. 64 people this Sign My Guestbook | Read Tributes Written December 29, 2012 8:49pm by Kate Parker Written 33 minutes agoyou saidI'll be completeely honest that if Bethany is going to die (yes that's a real possibility) I really hope & pray God will let Joshua stay a while longer....Well that just breaks my heart?? How and why would you feel that wayWhat if it's the other way around?? Sorry but that's just not right.Bonnie HainesTHIS is proof that no matter what I say, SOMEONE is going to completely misunderstand my heart and what I meant. Let me re-explain this:? the thought of Bethany dying devastates me.? The thought of Joshua dying devastates me.? The thought of losing BOTH children is horrific beyond anything I can put into words.? I seriously cannot fathom how anyone would not understand why I would say if Bethany is going to die from what she is going through right this second, I really hope that God would give us a bit more time with Joshua so that I don't have to deal with funeral arrangements for 2 children simultaneously.? That is ALL I meant!? I don't want to lose EITHER of them!!!? If Joshua dies tonight, I pray God would give us a bit more time with Bethany.? Again, for the exact same reason!!!? It's not a matter of preference.? I love them both.I am seriously sick of the comments implying or outright saying that I favor Joshua over Bethany and if you are sitting there, dissecting every sentence I write as you try to find something that supports YOUR belief ('cuz it's your problem, not my reality), then please don't comment.? Extend me some mercy and grace.? Try to understand that if I don't say something perfectly (in your opinion), I am under a tremendous amount of strain and I am doing the very best I can to manage 2 very-ill children and their 6 siblings.? I am not taking the negative comments to heart, but I would like to be able to come to my children's caringbridge pages and not have to encounter tactless or rude or nasty or insulting or hurtful comments.? I really don't think that should be considered an unrealistic expectation!? :)? 59 people this Written December 29, 2012 3:52am by Kate Parker I won't be taking Joshua to Portland this next week to see Dr. T.? Two reasons.? First, he is now getting nauseated & vomiting when he takes a car ride for more than a couple of miles and, as such, we don't think it would be safe to try to get him to Portland via car, as he would vomit repeatedly and that would land him in the ER, at minimum, to get IV fluids.? He had his port flushed today & vomited on the way home.? It took him a couple of hours to get past the nausea (even with Zofran) and since all of his meds go into him via g-tube, we just can't risk putting him in a situation where copious vomiting is an almost-guaranteed result.The second reason I won't be taking Joshua to Portland is because Bethany is in the hospital again (locally) with congestive heart failure & a small GI bleed & a possible infection.? Again.? Joshua is fading.? He is tired and lethargic most of every day.? It's hard to explain and honestly, it is a few minutes before 2am, so I can't take the time right now to write it all out, but I wanted to mention it so I will remember to explain more fully in a day or two when I have the time and presence of mind to write an actual post versus a short update.? The way Megan described it is that it's like Joshua was hanging on for Christmas and now that it's over, he's letting go.? We're not trying to make him hang on, either, but I'll be completely honest in saying that if Bethany is going to die soon (yes, that's a very real possibility), I really hope & pray God will let Joshua stay for awhile longer because I don't know if I could deal with losing two of my kids in a very short span of time.? I am still trying to wrap my mind around how we can even be at this place where it would even be a possibility!41 people this Sign My Guestbook | Read Tributes Written December 28, 2012 1:36am by Kate Parker I'm confused.? Dr. T wanted to get Joshua to where he was not needing any breakthrough doses of oxycodone.? He wanted him getting just his Q4 (every four hours) dose plus his methadone & fentanyl patches.? We'd finally gotten there, and then Dr. T wanted to try cutting down on the amount of oxycodone we were giving Joshua Q4.? To do that, he increased the methadone doses that Joshua gets Q8 and decreased the Q4 oxy doses.? That did not work well AT ALL and Joshua started requesting breakthrough medication left & right.? After a few days of that, I decided to go back to what HAD been working, so I lowered the methadone back to what it had been & increased the oxycodone to what it had been, thinking that we'd go back to the pain control we'd had, which had been working well (ie: no breakthrough doses of oxycodone).? That isn't what has happened, though, and I don't understand why.Joshua is back to requesting breakthrough oxycodone 2-3 times per day.? That doesn't sound like a lot, but when you think about how he gets oxycodone every 4 hours around the clock and how he's typically awake for 8-12 hours per day, then you can better understand how him wanting breakthrough medication even 2-3 times is actually quite a bit.I head up to Portland next week with both Joshua & Bethany, so I'll be able to sit down with Dr. T & hopefully get this all figured out.? We can manage until then, but honestly, it is SO confusing to me what this little boy's body is doing!? I try to approach things logically & Joshiebear is seriously defying logic sometimes, which makes this whole pain control thing a lot more challenging than it should be.34 people this Sign My Guestbook | Read Tributes Written December 26, 2012 1:46am by Kate Parker The change-up of Joshua's medication (increasing methadone while decreasing oxycodone) has been a big ol' FAIL. We are going back to what was working since he wasn't needing breakthrough doses of oxy & even though his head still hurt, it wasn't bad enough that he was complaining throughout the day. With the latest change in medication dosages, his "head hurts badly all the time" (what he tells us) and he's needed breakthrough oxy. Sooooo... nope! We're switching back, effective immediately.? I hope his palliative care doctor is okay with that.? I can't imagine why he wouldn't be.Charley & Adam worked today, so we're having our Christmas celebration tomorrow.? Joshua is *very* excited to open presents again.? He thinks that having 2 Christmases is a pretty fantastic way to do things.? Emily, David, Sarah & Isaac are in full agreement!? LOL? I admit, it's been a lot of fun.? I'm off to give midnight meds & then head to bed, myself.? Thankfully, my kids don't wake me up at the crack of dawn, so I'll get up after giving Joshua his 8am meds to make monkey bread, bacon & eggs for the family and then we'll play board games and hang out until Joshua wakes up for the day.? Then it will be time for unwrapping the gifts and I anticipate the level of excitement will be high.? I can't wait!? I don't care so much about getting presents, myself.? What I love the most is watching the expression on my kids' faces when they unwrap something that I know they've really wanted.? It makes me happy to see them happy, which means tomorrow will be a wonderful day!? Yes, there's a twinge of sadness that tries to creep in as the thought that this could very well be Joshua's last Christmas swirls through my head, but I remind myself that we thought that last year, too, and he's still here, so why not believe he could still be with us in December, 2013?? Okay, yeah, I know it's not the most-logical thought, but it keeps me from getting mired down in melancholia, so I'm going with it.? :)41 people this Written December 24, 2012 3:46pm by Kate Parker Here we are once more.? Christmas Eve.? And Joshua is still here, enjoying life to the fullest that he is able.? Absolutely amazing.? A year ago, I said it would most likely be our last Christmas with him. Everyone involved in Joshie's care thought he would die in the beginning of 2012. While I honestly cannot imagine that he'll be able to live another year, I've learned not to make assumptions.? My little man is writing his own book & doing things his way.? I have no idea how much longer he can go on, but oh, how happy my heart is today that God gave us another year to smile with, laugh with, hug, hold, kiss, cuggle & enjoy Joshua.? I didn't ask for anything this Christmas because I already got the gift I wanted most.We increased his methadone again and, as such, we're seeing the typical resulting increase in sleepiness.? We decreased his oxycodone dose, so we're hoping that after a few days of getting accustomed to the new dosage of methadone, Joshua will be less tired.? I took Joshua in to see his pediatrician? because of the weird "hocking" noise he makes. I was hoping he had an infection or strep ~~ you know, something easy & fixable. No such luck. After examining him & chatting with me about what we see going on, Dr. S sadly told me that she thinks this is chiari-related. As soon as she said that, it made sense. I mean, duh, I've watched chiari symptoms for years. Why didn't I think about it? Probably because I know we can't do anything for it. So, we're keeping track of what Joshua eats & when the hocking is worse so that we can start trying to limit his eating of things that make the symptoms worse. He is much more brave about the situation than I am. I explained to him that if a food makes him feel like he's choking, he probably shouldn't eat it anymore, and he started listing foods that he said he can't eat. There are a few that cause him trouble, but he's not ready to give them up for good yet and I'm not ready to push it at this point. It looks like we're heading down the path toward Joshua not being able to eat much by mouth anymore & that makes my heart hurt.? God has given Joshua such grace, though.? He accepts every new limitation and makes the best of it, which is inspiring to me.? I really am so thankful that Joshua is still alive.? The new picture I put up was him being silly.? He asked me to take a picture & when I grabbed my camera, he stuck the candy cane sideways in his mouth & tried to smile around it.? The picture is not edited at all except for cropping it.? His coloring is pale with a grayish-purple tint.? At times, he has very dark circles around his eyes and when he's not oxygenating well, the skin around his mouth and nose get darker gray, too.? It is shocking to look back 6, 12 or 18 months ago and see how much healthier he appeared even though he really wasn't.? Megan, Adam & I have talked together & wondered how much worse things will get. What's interesting is that whenever we see people who know us, we get told that Joshua looks really good.? People who don't know us act concerned by Joshua's appearance;? in fact, there were two well-meaning strangers in Wal*Mart who were worried that he wasn't breathing since he was so gray (he was really tired).? I suspect that our friends don't know what to say & they don't want to hurt our feelings, so they try to ignore the obvious & just say Joshua looks good.? I have a couple friends who are always completely honest with me & it is a huge relief to have them validate what my family sees every day.? They are the friends who will cry with me over the changes we're seeing.? The ones who will quietly tell me in very sad voices, "Oh Kate, he looks awful now!"? Maybe that sounds mean of them, but you know, it's not like we think he looks healthy.? We know he doesn't.? Having others acknowledge that truth is refreshing.? When someone says, "He looks great," all I want to respond is, "Yes, gray is really his color, isn't it?"? Maybe they don't expect to see Joshua walking or talking or sitting at the computer playing a game or out of the house in his wheelchair and that's why they think he looks great. I don't know.? I think they want to make me feel better, but don't know what to say to make that happen.? I wish I could whisper in their ear that the truth, spoken with love, is always the best path to take.? I think it's fantastic that Joshua is still capable of doing things that bring him enjoyment.? I am thrilled that he still has a quality of life that makes all the work we put into keeping him comfortable totally worth it.? I am filled with gratitude that God has given us so much more time than anyone thought possible when Dr. W did the last surgeries a year ago.? It's okay to acknowledge the truth of what we see, though, and admit that yes, Joshua is not looking as healthy, that he's wearing out, that it's sad that he's losing so much as he moves closer to the time he will leave us and go to be with Jesus.? One of the many things I have learned on this journey is that it is entirely possible to feel two contradictory emotions simultaneously.? I can honestly say that I am tired of living in limbo, waiting for this awful event to occur & wishing it would just happen to get it over with while also never wanting Joshua to die.? Totally contradictory, but totally honest.? And yes, I know the day will come when Joshua dies and I am brokenhearted and I will write that I would do anything to have him back and someone will leave a snarky comment telling me how I had written that I couldn't wait for him to die even though that is not at all what I am actually saying. There's always someone who is a jerk like that, someone for whom reading comprehension is a big challenge, but they always manage to work a keyboard to spew their toxicity, unfortunately.I know this entry is all over the place.? That's fitting, since I feel like I'm all over the place these days.? There is much I would like to write, but right now, I don't feel I can because too many strangers would misunderstand and then ream me with hurtful comments.? I know there are a lot more of you reading this journal who are caring, compassionate people and even if you didn't fully understand where I was coming from with something I wrote, you wouldn't be mean to me about it (I greatly appreciate that, by the way), so maybe I will dare to share more at a later date.? Right now, though, I am still stinging from a nasty comment left on Bethany's page (Megan & I both responded, but after 10 hours & sleeping on it overnight & talking it over with a friend, I decided to delete the comment & our responses).? To be completely honest, I am feeling like I never want to write one more word about either Joshua or Bethany in a public forum because it hurts too much to be kicked when I'm already down, so that is why I am writing a journal entry here right now.? I know I don't have a lot to say, but I also know I need to write something so that I don't give in to the temptation to disappear.? I'm sure there are people who would celebrate if I were to fall off the face of the earth since they think I am such an awful, selfish mother who hates my adopted daughter and completely favors my biological son, but you know, I don't really want to give them the satisfaction of letting that happen.? I'm a brat that way, I ing home & getting back into the new routines that always result from a hospital stay & a couple new diagnoses takes me a few days.? Adding a major holiday in that mix seems to extend the time it takes me to readjust.? I'll bounce back and return in better form.? In the meantime, MERRY CHRISTMAS!!! 39 people this Sign My Guestbook | Read Tributes Written December 19, 2012 7:41pm by Kate Parker This time of being separated from Joshua as I am 250 miles away in the hospital with his baby sister has been tough.? The first few days were actually, surprisingly, not bad, but then, last night, Joshie asked me when I was coming home & I had to gently tell him I didn't know, but hopefully it would be soon.? He told me he wants me to be home with him.? That he misses me.? That he loves me. And my chest ached as I told him I love him forever.I hung up the phone and sobbed.I miss my son.? I miss all of my kids, but I miss Joshua the most because I know time with him is slipping away, so I want to be with him as much as I can.? Each day that I'm away from him, the ache to go home and scoop him up gets stronger.I laid on the hospital couch/bed and had a realization of how bad it is going to be when I am missing Joshua and longing to hug him, to hold him, to kiss his cheeks and smell his hair, but I can't because he won't be here anymore.? That insight was horrifying.I cried myself to sleep last night. This totally sucks.? 41 people this Sign My Guestbook | Read Tributes Written December 14, 2012 10:37pm by Kate Parker While things with Bethany have not yet improved (see update I just put up), I have one bit of good news ~ Joshua has not needed any breakthrough oxycodone today after the latest increase in his methadone doses and, according to Megan, he's had a good day today.? YEA and THANK YOU, GOD!!!Just thought that in the midst of the stressful stuff with Bethie, I needed to give a shout-out for the good stuff, too.? :)54 people this Written December 14, 2012 6:12pm by Kate Parker I try to not mix Joshua & Bethany's medical stuff by keeping her information on her page and his info here.? HOWEVER, Bethany needs prayer.? I brought her in for a routine medication infusion and she wound up in PICU and we still don't know what is going on.Please read the short update I put on her page: please pray!22 people this Sign My Guestbook | Read Tributes Written December 13, 2012 10:52pm by Kate Parker Yesterday, I spent the day in Portland with Bethany & Adam for an appointment with Bethany's rheumatologist.? After the appointment, I was able to sit down with Dr. T, Joshua's palliative care doctor, and two friends who work as a Child Life Specialist & a Chaplain at the hospital, for a long chat.? Dr. T couldn't stay for the entire visit, but while he was there, we talked about Joshua, his medications, how he's doing & where we see things going from here.? Dr. T increased Joshua's daytime doses of methadone by 25%.? The goal is to get to where Joshie does not require any breakthrough doses of oxycodone during his awake hours.? With each increase of methadone, we are getting closer to reaching that goal.? We also make him sleep more.Talking with my two friends was a huge gift.? I try to connect with both Lynn & Merv whenever I'm in Portland, but with their busy schedules, our visits have to be short & sometimes we can't work out a time to meet up.? Yesterday, though, they were both miraculously able to carve a little over an hour out of their day to spend with me.? Honestly, that time was an answer to an unspoken prayer of my heart.? Do you realize what a conversation with a child life specialist and a chaplain who have walked beside me through almost every surgery, every hospitalization, every truly scary time with Joshua means?? It means I can say ANYTHING and they totally "get it". They both have a depth of understanding regarding terminal illness & death that most people just don't possess (understandably). They also know me very well, so they understand how I process medical information & a lot of the emotions that go along with parenting Joshua (and Bethany). Things I don't even attempt to write for fear of being misunderstood or thought horrible for feeling or thinking what I do are things I can openly talk about with Lynn & Merv.? They have a way of making me feel normal... of validating my feelings regardless of how clumsily I express them. I'm not saying that there are not others who read here & comment who do that for me, too, so please don't get your feelings hurt... I'm simply saying that being able to talk & share my heart with two friends who have been with Joshua & me through thick & thin over the past few years was exactly what I needed yesterday.? They let me cry a little, they laughed with me, they said all the right words & none of the wrong ones and they hugged me a lot.? It was truly perfect.? It reminded me that God cares.? That He sees it all, He knows what I need, and He is able to do exceedingly more than I could think to ask for (Ephesians 3:20). Joshua is all right.? His breathing is a bit more labored now and he says he is tired all the time, but he continues to push through the fatigue to participate in activities he enjoys.? Those activities are getting more narrow ~ meaning, he isn't doing as much as he did a month ago ~ and I attribute that to his decreasing energy.? He likes it when a sibling makes up a bed of blankets on the floor for him to lay on, snuggled under the blankets with me or a couple of siblings (or me AND a couple of siblings!).? The computer is still fun for him, though we frequently find him sitting still, holding the mouse but doing nothing, as he zones out for a few minutes. In the past few weeks, he has been spending more time playing with Isaac, which has been really sweet to see.? He is still "hacking" (sounds like he's trying to hock up some phlegm) periodically throughout the day, typically after he's eaten, which makes me suspect he's not getting food down all that well anymore.? After he eats a tiny amount, he says his belly hurts and we respond, "Okay, stop eating," since there's nothing we can do about it.? He tells us daily that the side of his belly hurts.? It is the side where both of his shunts drain and I am sure the tubing is encased by scar tissue, so I'm guessing that the scar tissue is pulling and causing the discomfort.Overall, I'd say Joshua is happy 80% of his day.? Dr. T told me that was actually really good, considering where we're at.? He said (again) that Joshua is not doing anything the way we expect him to, but hey, that's how my little guy has rolled his entire life, so why would we expect him to change his style in the last inning of the game?? *smile*? 45 people this Sign My Guestbook | Read Tributes Written December 9, 2012 11:41pm by Kate Parker Treasure map drawn tonight by Joshua.? I labeled what things were as he explained it to me.? Yes, it's hard seeing him scribble like a toddler when he used to be able to draw in an age-appropriate fashion, but it has been so long since he's put pen to paper & he was so proud of his creation that after a momentary twinge of sadness, all I felt was joy as I praised Joshua and thanked him for his masterpiece.? I'll be saving this map forever.? :)When Joshua woke up this afternoon, he wanted to cuggle, which is something I'm always happy to oblige.? As he snuggled in my lap, Emily & Sarah sat on either side of me and the four of us watched videos of the kids from over the years. We saw lots of clips of Joshua when he was climbing, swinging, talking, running and riding his trike & scooter. All of the kids thoroughly enjoyed the trip down Memory Lane and seeing the younger version of themselves. When we were finished, Joshua wistfully told us, "I want to go back to when I was like that." I hugged him close & told him, "I know. I wish you could go back to when you were like that, too." Even fun times are not immune from inadvertently causing some pain to my heart. How I wish Joshua could go back to being that little boy.? The one who could physically do all the things he enjoyed, the one who didn't hurt so badly all day long, the one who was healthy & strong.? If only a wish could make it happen.Tonight, we took the kids out to eat at Burger King (a rare treat) and then we got a new Christmas tree because the one we had for our mini-Christmas at the beginning of November was getting crispy. Joshua was exhausted and not feeling very good while we waited for our dinner. I suggested to him that he close his eyes & rest so that he'd feel better when we went to pick out the tree. He complied and we thought he'd fallen asleep, but after a bit, he opened his eyes, turned his head & was staring off in the distance. After watching him for a couple of minutes, I asked what he was looking at. He mumbled an answer, but all Charley & I could make out was something about "the angels". All of us turned our heads & looked, but we didn't see anything. Apparently, the angels were there to converse with just my little Joshiebear. :) After they left (Joshua said they were gone), he perked up and felt better. He enjoyed looking for a tree, helped pick one, and after we got home, while the new tree was put up & decorated, Joshua drew me a "treasure map" (the picture attached to this post) and "wrote" his name (the circles at the top).? I wish I could see the angels that Joshua sees and I wish I could hear what they say to him. I also wish that Joshua could articulate what he hears, but thus far, he's not been able to do so. Every time anyone asks, "Do they talk to you," he answers, "Yes."? When we ask, "What do they say," he responds exactly the same way:? "I don't know."? And each time, he has exactly the same expression on his face:? a half-smile with a faraway look in his eyes. Tonight, a thought occurred to me, so I asked him, "Do they talk to your heart?"? He gave me a surprised smile, like he couldn't believe I knew his secret, and said, "Yes." I told him I thought that was wonderful and said, "That's why you can't tell us what they say.? They're talking only to you."? He nodded in agreement and seemed relieved that I understood. I asked, "What do they look like?"? He smiled again and answered, "They look like angels.? They have a lot of light.? They have wings."? I asked if they were pretty and he thought about it for a moment before replying, "I think they are pretty."? I asked if they were big or little.? He first answered, "Little," then quickly added, "Actually, I'm not sure. Sometimes they look little but sometimes not."I think it's really amazingly awesome that angels visit him and I really hope the visits continue because Joshua always seems happier & more peaceful afterwards. I love the tangible signs from God that He's here, that He cares, and that He's preparing Joshua to come Home with Him.? I believe the visits from angels are as much for me and the rest of my family as they are for Joshua.? It's assurance for us that yes, heaven is a real place, God is a real entity, and the words of the Bible are true. As such, I know I can trust that God IS working out His plan, He IS good, and He WILL return for me someday, too.? I WILL see Joshua again ~ I have no reason to doubt it ~ and my baby boy will be loved perfectly & watched over in the time between when he physically leaves my presence and when we are again reunited in God's Kingdom.? That is the message I get from witnessing the angel visits.? No, I don't see them for myself, but it's enough for me to watch Joshua because I KNOW that he is, without any doubt whatsoever, seeing exactly what he says he is ~ angels from God.? And it's incredible.50 people this Written December 7, 2012 12:48am by Kate Parker I feel guilty for being sad about what is going on with Joshua when I know so many mothers would probably like to slap me & tell me to get a flipping grip ~ at least I still *have* my child, so get over it & save my sadness for when he's gone.? That's understandable advice. Honestly, I don't sit around being sad all day long every day, despite what my journal entries may sound like sometimes, but yeah, there are things that hurt my heart, so I write about them rather than hold it all inside.? I'm not really sure how to not have bouts of sadness, no matter how hard I try to simply thank God for each day He gives me with Joshua. I've said it many times already, but it's still completely true ~ watching the little boy I know slowly leaving, bit by bit, and being replaced by a shell of himself, is anguishing.? It beats him not being here at all, but it doesn't diminish the enormity of what is happening.Megan and I were flipping through pictures on my phone tonight & we came across several from a year ago.? Joshua, missing his 4 top front teeth, laughing as he sat in his carseat, his little legs dangling.? After admiring how cute he looked, Megan quietly commented, "Wow, his legs were so much bigger then!"? I'd noticed it, too. It wasn't a deliberate thing ~ it just stuck out as obvious how much more-healthy his legs appeared last year compared to the thin sticks they've become. Sometimes, it isn't until we look at older pictures that we realize just how much he's changed, but not for the better.? Other times, we only have to look at Joshua to see the differences.? ~ He can't straighten his legs completely anymore, in any position.~ His right heel doesn't touch the ground when he walks, which makes his gait lopsided and unsteady.~ He lowers himself to the ground very gingerly, moving like a little old man rather than the 6 year old that he is.~ His typical wake-up time has been between 4 & 6pm this week.? He goes to bed after getting midnight meds.? That translates into only 6-8 hours of awake time per day & his methadone was NOT increased this week (it should have been, but his pediatrician never contacted his palliative care physician).? I'm in no rush to increase it again, as my fear is we'll see his awake time further reduced.~ His feet have lumps & bumps where his broken bones have not healed perfectly.? His right foot is significantly worse-looking than his left.? Thankfully, his feet don't cause him pain.? The benefit of nerve damage caused by spina bifida (who'd have thought THAT would ever be considered a plus?).~ He's having increasing difficulty with swallowing... or something.? Whatever is going on causes him to make noises like he's trying to hock up a hairball.? He can't actually bring anything up & he tries to spit, but totally can't coordinate that, either.? He says he feels like there's something caught in his throat.? Those are the obvious, anyone-would-notice changes, and each one makes me sad.There is more that I wanted to write, but Joshua has come over, laid himself down and is resting his head on my leg.? He asked, "Can we go to bed?? I'm tired, even though I slept all day."? He woke up at 5:35pm.? It's now 12:15am.? I'm thankful for the 6.5 hours I've had with him tonight, but now it's time for me to go through the routine of preparing meds & fluids for throughout the night, getting Joshie hooked up to oxygen & pulse ox, teeth brushed, nighttime diaper on, then all tucked in so my sweet little man can go back to sleep.? I will curl up behind him, my arm wrapped around his little waist, and drift off, myself, appreciating that Joshua is still breathing next to me.? I know so many mothers who are wishing they had their precious little ones still with them, so even though Joshie's decline saddens my heart, I recognize that this time with him *is* a gift from God & I will try to not let the sadness overshadow the joy of still being able to hug & kiss my little boy.? I don't want to look back & regret anything.Good night!52 people this Sign My Guestbook | Read Tributes Written December 5, 2012 2:21pm by Kate Parker This journal entry is not about Joshua, but I need to write it because one of my friends needs urgent prayer.? Unless God grants a miracle, her 6 year old daughter, Aziza, is going to heaven today.? This is sudden.? There was no warning.Two days ago, Janet (Aziza's mom) said Aziza wasn't feeling well & she feared a stomach bug.? Yesterday, she took Aziza to the hospital, where Aziza coded (stopped breathing/heart stopped beating) & she was urgently transferred with a full medical team in the ambulance with her to a children's hospital, where she was rushed into emergency surgery.? At the time she went into surgery, it was thought that Aziza had an intestinal obstruction with possible bowel death, but despite a team of 17 doctors working on her, no one was able to locate the site of an obstruction.? Aziza was taken to the ICU on a ventilator and in a medically-induced coma since her abdominal incision could not be closed due to her intestines swelling.Five hours after Aziza had been in ICU, her mom still had not seen her.? Aziza was bleeding profusely and doctors were working hard to get it under control.? Janet was told that the lack of blood flow to Aziza's organs was causing multiple other complications and her daughter was critically ill.Last night, Aziza's kidneys failed. Dialysis could not be started because she was bleeding too much to get the lines in. Overnight, she developed sepsis.? Her liver was not working & her heart had also sustained damage.? She was packed in ice to attempt to bring down her fever.? During shift change of the nurses this morning, Janet had to leave the ICU.? While she waited to return to her daughter's side, a doctor came out & informed her that Aziza was deteriorating.? Soon thereafter, family & friends were called to come and Child Life was brought in to assist in preparing Aziza's 14 year old sister, Samantha, for seeing her baby sister in ICU.A friend went to visit and was asked to share the news that Aziza had deteriorated further and though the doctors were trying one last thing, the family was saying their goodbyes.? I haven't heard anything more.? I have been alternately crying and asking God, "WHY?!?!?"? This is so senseless!? Aziza has overcome SO MUCH in her little life already ~ WHY would she be taken without warning, so suddenly, just 3 weeks before Christmas?? It is so unfair.? It is so AWFUL!? There are so many children who He is mercifully allowing to live through the holiday season, granting families time before they must say goodbye to their child.? Why would He take Aziza? I keep begging Him to let her live. To save her.? To restore her to health in a miracle healing that defies explanation.? I can't fathom a reality where Aziza dies today. We thought it was a virus... the stomach bug going around that so many kids and adults are getting!? We sympathized with Janet, saying we hoped Aziza would be over it soon.? NO ONE saw this coming!? And honestly, in my opinion, THIS situation is the very definition of horrifying. I know it's not about me or Joshua, but I have not been able to not think about our situation in relation to Aziza.? I think that it's painful and sad knowing my child is going to die, but knowing has given me the opportunity to deliberately make memories & do things like hand castings & voice recordings & the like.? There is time to prepare to the best of a person's ability for the loss that is coming.? I do not believe that makes it easier to lose a child ~ that pain is brutal no matter what ~ and with the knowledge that your child is dying comes a set of its own challenges, but wow, to watch a friend's child go from healthy to death's doorstep suddenly, without warning, defies adjectives.? Awful, tragic, heartbreaking, horrible.... those words are not strong enough.? They don't encompass the pain that I feel in my chest for my friend.? I can't make any sense of this and while I know that God has a plan and what is happening with Aziza is part of it, I don't get it.? At. All.PLEASE pray for Aziza & Janet & Samantha.? Please visit her blog & leave a comforting word () or go to the Facebook page set up for Aziza ().? While Aziza still breathes, there remains hope for a miracle.? This is the season of miracles, right?? Please pray with me that God's will is to grant one to this family that so desperately needs it.*** Update:? Aziza died at 2:20pm.? Please go to her mother's blog and leave a comforting word for a situation that defies comforting.? I know the Lord holds Janet & Samantha right now, but that doesn't diminish the pain.? One more child gone too soon.? One more mother scarred forever.? One more family torn apart.? Come soon, Jesus.? Please. ***25 people this Sign My Guestbook | Read Tributes Written December 4, 2012 9:07pm by Kate Parker I'm feeling concerned about Joshua. Two weeks ago, Dr. T (palliative care) began increasing Joshua's dosages of methadone ~ slowly ~ with the goal being that we eventually reach a dose that controls his pain sufficiently so that he does not require any breakthrough doses of oxycodone. We've reached the point where Joshua is prescribed the maximum amount of oxycodone the DEA will allow and, as such, we needed to make some changes to Joshua's medication regimen since our practice of increasing his oxycodone dosage when his pain increased would no longer be possible.? On paper, it's a good plan: once per week, increase the amount of methadone he gets, then assess how well the increase is working.? In reality, the results are not nearly so stellar and that is what has me concerned.Before we began increasing his methadone, Joshua was requiring 3-4 breakthrough doses of oxycodone each day over a 12-14 hour time period.? By "breakthrough", I mean that in-between his scheduled doses of oxy (which he gets every 4 hours), he would need another full dose.? So, essentially, he was getting oxy every 2 hours while he was awake & occasionally an extra dose if things got bad.? Two weeks ago, Dr. T did the first increase of methadone and after a week, Joshua was needing 2-3 breakthrough doses of oxy over the same 12-14 hour time period.? He was more tired from the methadone, but not terribly so, which I felt encouraged by since our previous attempts to use methadone as Joshua's primary pain medication had resulted in him being pretty much snowed (sleeping for the majority of a 24 hour day).? Last week, Dr. T made another increase in the methadone dosage.? As of today (a week later), Joshua is needing 2-3 breakthrough doses over a 8-12 hour time period.? He is sleeping more and even when he's awake, he's tired and tells us so.? He often "zones out," just sitting & staring at nothing (and no, he's not seeing angels ~ we've asked & he says he's not looking at anything). We'll touch his shoulder & call out his name to bring him back to awareness of what's going on around him.? Also, despite no obvious increase in apnea, he is experiencing more times of feeling as though he can't breathe well.? Yesterday, he even requested oxygen assistance, which is unheard of.? My concern is that as we continue increasing the amount of methadone Joshua receives,we're going to see more hours spent sleeping & less clarity of mind when he is awake.? It concerns me that the last dosage increase did nothing to lower the amount of breakthrough oxycodone Joshua is requiring, but it did increase his sleepiness & mental "fog".? As one of my friends would say, "No bueno."*sigh*I've been doing a lot of thinking lately about how it is that Joshua is still alive.? The conclusion I've come to (aside from "God hasn't deemed it time to take Joshua Home yet.") is that the VP shunt that was placed last November must be making the difference.? Prior to the shunt being placed in his head last year, Joshua followed a fairly predictable pattern of developing scar tissue that would block the flow of cerebrospinal fluid (CSF), which would put increasing pressure against his brain and, subsequently, his brain stem, which would result in increasing symptoms that then led to more surgery.? This happened in both Joshua's head & his back, repeatedly.? Last November, after a 6th chiari decompression did not make a difference in Joshua's pain level, Dr. W did a last-ditch-effort and placed a ventriculostomy ~ an externalized VP shunt ~ to see if it might make a difference.? It did, so the shunt got internalized, and after a few more weeks in the hospital, Joshua was discharged and everyone hoped he might survive a few more months.? So what happened that would have allowed him to live another 13 months (and counting)?? All I can come up with is "the VP shunt".The human body produces about 2 cups of CSF per day that gets circulated throughout the brain and around it & the spinal cord. Before Joshua had a shunt in his brain, scar tissue would block the CSF and we'd see signs of increased cranial pressure from the backed-up fluid.? Now, however, even though we know from his last MRI that scar tissue is making a mess inside the back of Joshua's head, the shunt makes a way for the CSF that isn't draining properly due to the build-up of scar tissue to get past the blockage.? In the past, there was no detour for that fluid.? Now, though, it's there, and I think that Joshua's body has achieved a balance of CSF production & drainage via the shunt that is working to allow him to live a whole lot longer than anyone ever though possible.? And while that's a huge blessing, a very good thing as it has meant a lot more time with him, it has left me wondering what the future will look like.? I mean, everyone thought we would see? what had happened multiple times before happen again ~ scar tissue would build up & block the flow of CSF, thereby increasing pressure against his brain, and since no more surgery could be done to remove the scar tissue & relieve the pressure inside his head, the compression of Joshua's brain stem would lead to death by respiratory failure.? But now?? Now what would anyone predict?? I've asked that question & been told that Joshua is writing his own book.? In other words, no one knows anymore because he's outlived what anyone anticipated was possible. I know that Joshua's condition is still terminal.? His brain stem is deteriorating and that won't stop, but it seems to be a fairly slow process, which makes me wonder what the future looks like from here.? Is it possible that he could live another year?? Six months?? Three?? If so, what would that look like as his symptoms increase?? Will there come a point where he's either snowed all the time or where we can't control his pain & are forced to admit him to the hospital for the rest of his life, however long that might be? He's on a downward decline, but we can't see how long the slide is, so while we know that at the bottom stands Jesus with His open hands ready to catch Joshua, we have no idea when he's going to reach the end.? Psychologically & emotionally, it's a hard truth to face.I realize that no one knows how many days they have to spend on Earth and that is why we should make the most of each day, which we have been doing (and have been SO thankful for), but I have learned there is a difference between knowing, theoretically, that you could die any day because anyone can die at any time and knowing, definitively, that your child has a medical condition that is incompatible with a normal lifespan. I am finding that being told your child is not expected to live 3 months and then, when he does, being told that maybe you'll get another summer with him, and when he breezes past that goalpost, hearing that "it" could be any time but no one really knows for sure anymore... well... it's brutal.? It's a total mind game. I'm not saying anyone has deliberately been messing with my family ~ not at all ~ it's just that when you're told your child is going to die soon, you make preparations and you do all the memory-making stuff you can think of and you talk to your other kids about what is happening and you do all you can to prepare yourself to let go when you have no other choice. Then it doesn't happen and you start to wonder if maybe the doctors were wrong.? If maybe, even though your child has this condition and you've seen the MRIs & intraoperative pictures, MAYBE he'll actually be okay.? And then you watch him slowly decline and you realize that yes, he IS going to die, but you don't know how it's going to happen because the way the doctors predicted it would happen was changed when a shunt was placed & surprised everyone by keeping your child alive.? It's an emotional roller coaster.? Every single night, I say goodnight to Joshua as though it will be the last time I get to hear him speak, just in case he dies before morning.? As he continues to decline, I find myself not wanting to leave him in case "today" is the day.? I don't WANT him to die, but I wish I had some idea of how long he actually has left because if God were to tell me, "Okay, Kate, he'll be with you for about 4 more months," I could actually relax a little bit, which maybe sounds crazy, but it's how I feel. Instead, I have no idea, so that means it could happen any day, just as Dr. T told me during our last phone conversation.? As such, the emotional roller coaster continues, with my heart wanting to imagine a reality where Joshua lives for years to come while my brain throws logic & what I can see happening with my baby into the mix, which paints a completely different picture.? It's painful and awful and if didn't mean Joshua would die, I would wish it would end.Please do not misunderstand me.? I am NOT saying that I wish Joshua would just die and get it over with.? That's not my feeling whatsoever!!!? I wish he could get better, live like a typical little boy, grow up, get married, have children of his own.? If there was some way to fix what is wrong inside his little body, we'd already be fixing it.? I'm not saying I want this to be over because I will never be ready for it to be over.? I will never be ready to spend the rest of my life without my son in it. I'm simply trying to express how difficult it is to have a child who has outlived all predictions for his life expectancy but still has a condition that is slowly killing him.? Never knowing what the day holds ~ will he wake up at noon or at 6pm, will he have trouble breathing, will we be able to control his pain & keep him relatively comfortable ~ is emotionally exhausting.? Not one day goes by where I don't have at least one of my younger children asking me, "Do you think Joshua will live until _________ (Christmas, New Year's, his birthday)?"? They are watching him slide downhill, too, and like me, they wonder when and how it is going to end.? NOT because they WANT Joshua to die ~ (how could we ever want that?!?!?) ~ but living in limbo is painful for my entire family in ways that are impossible to describe.? I don't want life with Joshua to end.? I just wish I had some idea how he is going to get to where we can see he's heading.? I thought we had an idea, but we don't.? No one does.? There's no literature, no medical journals, no doctor in the country who can tell me what we can potentially expect or what signs to look for that would give us an idea that the end is near. I understand that there is no one other than God who knows. All I am asking Him now is to not allow Joshua to suffer.? To put a burning desire within Joshua's doctors' hearts to provide the best possible care for my little boy.? For them (and me) to be creative in thinking of ways to manage every symptom that arises so that we might minimize all discomfort or distress.? And for peace when his journey comes to an end.? Peace for him, and comfort for all of us who love him.34 people this Written December 2, 2012 4:15pm by Kate Parker Thank you to everyone who prayed for Joshua ~ he woke up with only a trace of sniffles, feeling good (his version of good) and happy. His throat isn't sore anymore and he's not coughing or having runny diapers. I give all glory to God for this turnaround and thank you for lifting Joshie to God in prayer!He is currently decorating sugar cookies with his brother, Isaac, who is celebrating his 9th birthday today.? I am so so so so happy that all of my kids are feeling well enough to have fun ~ truly, this is an answer to prayer and I am SO thankful!Bless all of you for caring and asking God to protect Joshua from the effects of this virus.? I'm thanking and praising God for answering those prayers!45 people this Sign My Guestbook | Read Tributes Written December 1, 2012 6:34pm by Kate Parker Joshua woke up not feeling well.? His dad had a cold & several of the kids have gotten sick ~ some with vomiting, all with sore throats, stuffy noses and gunky stuff getting coughed up ~ over the last week.? Very unfortunately, it seems Joshua won't be avoiding this virus.? I had to turn off his feed/fluids for several hours due to him feeling like he was going to throw up (I've restarted them at a slow rate).? He's needed extra doses of pain medication, too.? He's had some runny diapers, says his throat hurts, and his nose is getting congested.Would you please join me in praying that God would strengthen Joshua to fight off this cold virus and that it would be mild, never developing into full-blown misery?? Please pray that he does not begin vomiting & that he will tolerate his fluids & all medications because if he can't keep those down, I have no choice but to get him admitted to the hospital, which is not what we want.? I'm not worried or stressed at this point, but since I don't know how this illness will play out, I am asking for prayers that Joshua will recover speedily.? I really want to see him back to his normal again.44 people this Sign My Guestbook | Read Tributes Written November 30, 2012 1:18pm by Kate Parker Joshua's methadone was increased again this past Monday.? It's helping; he's only needing 1-2 breakthrough doses of oxycodone per day now.? It has increased his sleepiness, but not excessively so, which is great.He has discovered the joy of "playing" Monopoly. He holds the dice & it takes him about 30 seconds each time to make his hands work to let the dice go, but after he does, we move his pawn (he likes being the car) and then we help him with whatever he lands on. He LOVES buying everything he can and he doubly loves getting money from other players when they land on his properties (we just hand him the money; it's not like he realizes we've landed on anything he owns). He has no concept of a monopoly & prefers to get one property of each color to make a rainbow.? It's delightful to play with him.? :)We've had some sweet-but-sad conversations lately, too. A few nights ago, Joshua and I were getting ready to go to sleep and he asked what is wrong with Beppy (his pronunciation of Bethany). I told him that she has owies and he told me to give her medicine. I explained that I don't have medicine to give her, so he offered to share his, but I told him I could not give his medicine to his sister because it's his, not hers. So then he said, "If the hospital people won't help her, you should call Dr. W. She helped me. She is a good doctor." He paused, then added, "The other doctor who works with Dr. W is good, too." I supplied the name - Jenny - and he agreed, saying, "Yeah, Jenny is a good doctor, too. Dr. W will help Beppy. I think you should call her." I thought Joshua's concern for his baby sister and his suggestion that I call his neurosurgeon because she can help was really sweet. I didn't want to forget the conversation, so I rolled over, grabbed my iPod from the table beside our bed & quickly typed out what Joshua had said.After I'd written it and was snuggled up next to my boy again, he asked what I had been doing with my iPod. I told him I'd typed out what he had said about Dr. W and he said, very quietly, "Yeah, her is a good doctor. Her couldn't fix my head, but her did her best. It used to hurt REALLY badly, but then Dr. W helped and then my head hurt only a little. Now it hurts super badly again, but her can't help anymore. Maybe her can help Beppy, instead."Talk about a knife in the heart. I did not cry, though I wanted to. Instead, I hugged Joshua and told him Dr. T is switching his meds around to try and help make his head not hurt so much. Joshua got a bit excited and asked, "Can he make it not hurt AT ALL?" I couldn't destroy his spark of hope, so I answered that I knew Dr. T would try.. Joshua said, with great enthusiasm, "I hope it works!" It tears bits of my heart out to hear Joshua talk about how badly his head hurts and how hopeful he is that someone out there can fix it even though he knows no one can really do anything anymore.? It's awful.? I'm thankful that the increases in his methadone dosages are helping more now, but nothing brings Joshua's pain level to lower than "medium" (his description). Since one of my biggest goals is to keep my little boy comfortable, knowing that everyone's best effort can only keep the pain at a tolerable level for him makes me sad. Still, it's better than it *could* be ~ despite his pain, Joshua still smiles, giggles & finds enjoyment in each day ~ and I praise God for that.Another conversation we had took place last night when Joshua seemed to need some assurance about heaven.? He asked me if we all would be in heaven, too, and I told him, "Yep!? We'll all be there together!"? He asked, "And I won't be alone?"? I hugged him & reminded him that he's never gone anywhere alone, so why would he think going to heaven would be any different?? He nodded, understanding, but still seemed a bit anxious to me, so I squeezed him, pulling him closer to me, and said, "Joshie, going into heaven is like when we walk into our house.? Can we all walk in at the same time or would we get stuck in the door?"? He giggled & said, "We get sticked!"? I agreed, then went on, saying, "Okay, so going into heaven will be like walking into the house.? We can each go in, but it will be at different times since we can't all go in at the same time.? You get to go in first, and then the rest of us will come in after you, one at a time. And just like when you walk into our house first, you aren't alone ~ we're all right behind you, right?? Well, it will be the same way going into heaven, and then, when we're all together, we'll go to the place Jesus has prepared just for our family and it will be so great!" Joshua liked that idea and I could feel him relax in my arms.? He told me, "And no one will hurt ever again!? I won't have a port or shunt or anything!"? I agreed, saying, "That's right!? You'll be able to run & play in Heaven's playgrounds and you're going to have SUCH a good time!"? He giggled, said, "Yeah, and I will ride bicycles."? I hugged him close again and agreed that yes, he would definitely be able to ride a bike.? Then, satisfied with our conversation & having had his fears allayed, Joshua snuggled under the covers and fell asleep.I know that what I told him may not be 100% accurate since I have no way of knowing how things work in heaven (and yeah, I'm sure the gates are wide enough to allow many to enter at once, but I was going for an analogy that Joshua would understand), but I think that as long as I am not deliberately lying to him, it's okay, and God understands my heart & intention behind what I tell Joshua (to make sure he's not frightened of leaving us & going to heaven).? Once he's in heaven, even if my explanations were completely wrong, it won't matter anymore.? Joshua will have the mind of Christ and his understanding of things will be *so* much more than what my earthly brain can comprehend.? He'll know why I said the things I did and I think he'll appreciate that I did what I could to comfort him.? At least, I hope that's how it works out.? 51 people this Written November 22, 2012 1:33am by Kate Parker On Monday, I was anticipating hearing from Dr. S, Joshua's pediatrician, after she had a scheduled phone conference with Dr. T, Joshua's palliative care doctor.? The morning and afternoon were filled with medical things for Bethany, but I still half-expected my cell phone to ring and to see Dr. S's number come up. It never happened, though. When Charley & I finally arrived home, I called Dr. T & left a voicemail, asking him what had been decided during his & Dr. S's conversation.? Less than 5 minutes later, Dr. T called back & surprised me with the news that Dr. S had not yet called him and because she was not in her office on Mondays, he had no way to contact her.? Since he had me on the line, though, he was happy to discuss things with me, so we had a good talk about all things Joshua and made plans for where we will go from here.Dr. T began our conversation telling me he feels confident that we can make changes to Joshua's meds on an outpatient basis, which was fantastic news to hear. He said he will increase Joshua's methadone doses while keeping the base doses of oxycodone the same for now.? Once we've got his level of methadone high enough that we aren't needing to give any breakthrough doses of oxycodone, Dr. T will begin lowering the amount of oxycodone Joshua gets while simultaneously increasing methadone.? We'll evaluate how things are going each week and make adjustments as needed.? He said that what is happening with Joshua (increasing apnea during the day, but not so much at night) has him completely confounded because it's the opposite of what he anticipated happening. He said that Joshua is absolutely writing his own book & that while he still believes Joshua will one day experience an apneic episode that he does not wake up from and that it could happen at any time, he can't predict with any certainty when that will be because by all accounts, it should have already happened. He confirmed that we'll continue to see decline but had no predictions for what else we may see since there is not a lot of medical literature available on the deterioration of a child's brain stem.? He also flat-out told me that he is not going to bail on Joshua, he is not going to pass Joshua's care over to a different palliative care physician, and he will continue to be available to Dr. S for consultation about Joshua for the duration of Joshua's life.? He said there was no reason for me to worry about losing him as a member of Joshua's team and he was sorry it had been brought up to me as a possibility because from his perspective, it wasn't. Obviously, that came as a huge relief to me. Our conversation ended with me agreeing to page Dr. T on Wednesday when I was in Portland with Bethany & Joshua so that he could do an informal assessment of Joshua and offering to contact Dr. S's nurse so that she (the nurse) could get Dr. S to call him (Dr. T).Later in the day, Dr. S's nurse called me to let me know that Dr. S had talked with Dr. T and they had a new dosing schedule for Joshua's methadone (which I had known would be coming).? She gave me the new numbers & then said Dr. S wanted to now talk with me, so I was briefly put on hold while Dr. S got on the line.? Dr. S basically reiterated what Dr. T had told me earlier in the day and asked me to call her in a week to let her know how Joshua was doing with the new dosages.? We discussed Joshua's latest symptoms (the increased memory loss, worsening speech, increasing fatigue & apnea) and she was sympathetic & understandably sad about where we're currently at.? We agreed that keeping Joshua comfortable & at home is our primary goal.? It was reassuring to know that both of Joshua's doctors are still on the same page as Charley & me with regards to what we want for our little man, especially when there had recently been some questions about that.Monday evening was scary.? Joshua was trying to drink some juice & choked, which led to a bunch of coughing.? Immediately after recovering, he had a big apnea episode where, for the first time ever, he was unable to *make* himself breathe.? That led to him panicking as he struggled to get air. His eyes were terrified, he broke out in a cold sweat that drenched his head & face & he collapsed against me as his face took on a dark purplish-gray hue. When he was able to breathe again, he struggled to not cry because he had been so scared. The incident lasted probably only about a minute, but felt like hours.? All I could do was hold Joshua and rub his back and quietly reassure him over & over, "It's okay.... you're okay," even though I knew it wasn't & he wasn't. There was nothing else I could do.It was awful to watch the wild-eyed look of fear in my little boy's eyes and his hands reaching out and grasping at nothing as he realized he could not breathe. That night, I asked the Lord to please make Joshua's death a painless one with NO fear.? I begged, "Please, God... when it's time, just let him go to sleep & not wake again... please don't let him be aware that he can't breathe & can't *make* himself breathe. Please, God, don't let him struggle & be scared like he was tonight ever again. Spare my heart from having to see Joshua scared & me unable to help him."? It's the prayer I hope God will answer.The next morning, I woke feeling like I was going to cry, which was an unusual experience for me.? I could not shake the memory of the night before. No matter what I tried in an attempt to distract myself, I could literally feel myself losing the battle, so I called a sister in Christ who has been a steady anchor through every storm these past 2 years have held and poured out my heart to her.? I don't really even remember what I said, though I do know I rambled. I don't know how much she understood through my tears.? All I know is that she gifted me with several hours of her time and when I hung up the phone, I felt as though I had dropped 100 pounds of pain & could face another day.Joshua slept for most of Tuesday, most likely a direct result of our increasing his methadone.? When he woke just before dinnertime, he was dopey & moving/talking very slowly.? I asked if he was okay & he answered, "I'm really tired."? I explained that we had increased one of his medicines and he would be tired for a few days, but then his body would get used to the medicine and he'd feel better again.? Did I know for certain that would happen?? Nope.? I just opted for the power of positive suggestion, figuring that if I told Joshua he could expect to feel better, maybe he would, and knowing that if he didn't feel better, he most likely would not remember me telling him he would.Due to a big storm that made driving conditions dicey & Bethany developing an infection that landed her in the hospital, I had to cancel her appointments in Portland, which means I did not get to see Dr. T today.? It's all right, though; I'll check in with him when I take Bethany up in 3 weeks. Last night, Joshua had one big apnea episode while he slept (heart rate 34, oxygen 69%).? He is having a lot more apnea when he's awake and upright, as well as more episodes where he "spaces out" (best way to describe it). He has lost ground in the past few weeks, which makes us all suspect things in his brain are getting closer to that place where he'll not be able to recover.? I do not believe he is within days of dying and I don't want to give that impression to others.? I am sincerely hopeful that we will have many more months with Joshua in our midst. Even though he's not doing "great," he is still "okay".? He's not having non-stop apnea episodes and he still recovers from each bout without external stimulation from us.? He still plays Minecraft on the computer.? He is still living & smiling & finding enjoyment in the things he can do.? As long as we can keep Joshua comfortable & happy, I will pray that God allows him to stay with us.? 44 people this Sign My Guestbook | Read Tributes Written November 21, 2012 1:01am by Kate Parker I've only got a few minutes to write right now, but wanted to ask for prayers for both Joshua & Bethany.? Joshua has had a few difficult days and his methadone doses were increased yesterday, which has resulted in him having an "off" day today (more sleepiness, more stupor, less energy, more comments of being tired, more apnea). He had a scary episode last night while awake (it was about 10pm) of not breathing & not being able to *make* himself breathe, which terrified him (and me).? That episode came on the heels of a couple challenging conversations with doctors that had taken place earlier in the day and 6 hours of doctor appointments + lab visits + attempts at obtaining meds and I went to bed feeling incredibly sad & overwhelmed.? I woke up on the verge of tears, gave in & called a friend and had a complete meltdown crying jag as I talked to her about everything, then felt a bit better but still had a hard time getting my brain engaged for the day, and then Bethany wound up getting admitted to the hospital tonight.? I'm so tired & so sad & just really, really, really worn out. I'm worried about Joshua, who is not doing well (I'm not saying I think he's on the verge of dying... just that he's struggling more & that is concerning & sad).? I've wanted to come here & update on what is going on, but have not had the energy when I eventually find the time, so it hasn't gotten done.? I am going to try to write a full update tomorrow about the phone conference Dr. T & Dr. S had yesterday and the other things that are happening, not only so I don't leave you hanging & wondering what is going on, but also so I get the important stuff documented for future reference.? 37 people this Sign My Guestbook | Read Tributes Written November 16, 2012 4:42pm by Kate Parker I received word today that Dr. T (palliative care) and Dr. S (ped) will be having a phone conference on Monday to determine a plan for Joshua.? I don't get to be part of the conversation, but know that I retain final veto power, so if whatever they come up with is something Charley & I don't want to do, I'll let the doctors know that nope, it isn't happening.? I'm nervous.? I don't want to lose Dr. T.? He told me he would always be available to Dr. S, but then Dr. S said she thought it would be better to get Joshua switched over to someone else before Dr. T leaves for his new job and while yeah, that's logical, I don't know anyone else in the palliative care department well enough to feel comfortable letting them take over Joshua's treatment planning. I just want some stability through the end of Joshua's life.? Is that too much to wish for?? I also don't really want to have to put him in the hospital.? No matter how much anyone cares about him there, they cannot get breakthrough pain medication as quickly as I can at home, which means Joshua lays there hurting & waiting for a nurse to have time to take care of him.? I hate that.? I sit there with my supply of oxycodone but am helpless to do anything for my child because a parent can't give their child pain medication in the hospital (or... at least... they're not supposed to).? There are other concerns that I have, but I suppose that I should wait to hear what Dr. T and Dr. S decide before getting worked up about anything.? I really do hope that they opt to not rock the boat while Joshua is comfortable and stable (insofar as pain management goes).? I would understand their logic in wanting to get things switched around with his medications before his pain gets out of control again, but everything in me wants to wait until it's necessary since no one knows for sure that trying to flip Joshua's meds will be successful and no one can say with any certainty that it won't leave him sleeping more and interacting less, so I am not eager to change things.Joshua had his port flushed today and handled it really well.? On the way home, I felt prompted to stop by the therapy center where Joshua & 5 of my other kids used to receive occupational and speech therapy.? In a very God-ordained "coincidence," the therapy team was sitting down for a late lunch, as today they are preparing for an Open House at the center and no one was seeing patients, which meant I was able to carry Joshua back and say "hi" to everyone.? It was lovely to be able to give & receive hugs from the ladies who have played such a special role in so many of my kids' lives and for them to be able to see Joshua again.? My sweet boy was happy & smiley, telling everyone, "Hi," and even saying, "Sure," when I asked if his OT could give him a hug.? She commented that he looked tired & he'd probably fall asleep on the way home.? I think I surprised her a bit when I replied, "No, this is Joshua awake. This is what he looks like now. He's not going to fall asleep."? I heard a few murmurs from some of the other therapists when I said that.? Not in a negative way ~ everyone there is just as sweet as they can be and they adore Joshua ~ but maybe in a sad way.? I honestly don't know what they were thinking; as true professionals, they kept their 'game faces' on.? Anyway, though our visit was short, it truly made my day to be able to see everyone again. It's amazing what some friendly smiles & hugs can do to boost my morale these days. Just knowing that even though he isn't able to go to therapy anymore, Joshua still matters to everyone at the therapy center really touched my heart. It means so much to know that people care.43 people this Written November 14, 2012 10:23pm by Kate Parker A few weeks ago, I received an email from someone I've never heard from before.? She wrote that she had had a dream about Joshua and while she had never emailed a stranger before, she'd also never had a dream about a child she'd never met and she could not shake the feeling that she was supposed to share it with me.? After hearing about the dream, I was *so* happy that she had taken the time to write to me.? What she told me was she was standing near a very pretty playground with sky blue slides and tunnels. A little girl with dark blond hair done up in pigtails was running all around the playground. A little boy popped his head out of a tunnel and laughed at her. He said, "I hid so well, I knew you would never find me!" He climbed out of the tunnel, and in the dream she thought, "Wow, that's Joshua!" She didn't think he would be so tall and she said he had the prettiest eyes. He said, "We have to go. My Mommy's almost here." He took her hand, and they ran towards the woman. As they passed by, he was laughing and he said, "Keep praying for me all the time."When I read her recounting of the dream, it made me cry (not in a bad way).? I wondered if the little girl with blond hair done up in pigtails was Bethany.? And I was reminded of a friend telling me about a dream she'd been told about after her daughter died where the person who had the dream said they saw my friend's little girl playing on a playground with a blue slide.? Coincidence about the color of the slide?? Perhaps.? But maybe these ladies were given a glimpse of heaven and then the Holy Spirit prompted them to email my friend and me to tell us about it, knowing that it would bring us comfort to think about our children being in heaven & playing with other kids.? I don't know, but instead of analyzing it, I'm simply accepting what I was told and feeling thankful for such a sweet gift in the form of an email.Tonight, the kids & I roasted marshmallows in our wood stove & made s'mores.? Joshua sat on the hearth & toasted marshmallow after marshmallow.? He only ate a couple bites of one s'more, but he thoroughly enjoyed the process of making them.? I was too busy with laying out graham crackers with Hershey squares on them and then helping each kiddo smoosh their marshmallow in-between to get photos, unfortunately, but we had a lot of fun. We all are happier when Joshua is in our midst and able to enjoy the spontaneous, silly times. As often as not, he is sleeping or too tired to participate, which made his ability to enjoy the activity with everyone tonight doubly special.? ?45 people this Sign My Guestbook | Read Tributes Written November 12, 2012 8:35pm by Kate Parker Anyone who knows me in real life knows I'm a chatty person.? Words generally come rather easily to me & I enjoy conversation.? As of late, however, I've been having trouble finding words that can express the feelings & thoughts that swirl in my brain.? It's not that there's nothing going on or nothing to be said; I simply don't know how to say it, which keeps me uncharacteristically quiet.Joshua continues to be comfortable with regards to pain and his apnea episodes are still primarily occurring during the day when he's upright, which makes logical sense to me.? He continues to display lapses in memory ~ both short and long-term ~ but I can't figure out any pattern to what he remembers or forgets.? For the most part, he is not upset by what he no longer remembers.? Whether that is due to some deterioration that affected his emotions in that area or because we are doing a better job of responding in a nonchalant manner when he doesn't remember something, I don't know, but I'm relieved that he isn't crying over lost memories.? That's my job, not his.You might think it's great that Joshua doesn't remember every scary thing he's gone through (he still remembers some things, but not all), but honestly, try to imagine what it feels like to have someone you love not remember a huge amount of "stuff" that you have experienced together over the course of their life and maybe you'll understand why I don't feel like it's such a great thing that Joshua is forgetting so much.? Yes, he's been through a lot of painful, scary things, but those hospitalizations and surgeries and doctor appointments and trips up to Portland & back make up a large chunk of Joshua's life and, consequently, a big chunk of my memories with him.? Knowing that he no longer shares those memories with me hurts my heart.? There's so much that just Adam, Joshua & I shared over the years... losing Joshua's voice in recollecting the fun times we've had over the years is difficult.? A vital piece of the puzzle is missing & there's no way to get it back, which means our puzzle will never be complete again. Sigh... I don't think I'm doing a good job of putting this into words... suffice to say that every reminder of the continued downward slide Joshua is on is painful to an even larger degree than its been.? I don't know why.? I really don't.? It just IS.A few days ago, Joshua was napping on my lap.? He woke up & asked, "Do we have kickin' (chicken)?"? I told him that I didn't think we did and he told me he wanted chicken.? Specifically, he wanted a chicken burger.? I called Charley at work and asked if he could finagle making what his son wanted (it's not something his store typically makes).? He said he would & that he'd be home in about 15 minutes.? True to his word, he walked in the door with a container holding 2 mini chicken burgers (each burger was a chicken strip cut in half with a piece of cheese on a slider bun) and a handful of french fries.? I chirped, "Joshie, look!? Daddy brought your food!"? Joshua gave me a confused expression as he asked, "What food?"? "Your chicken burger, Baby," I reminded him, trying to spark his memory.? Again, a confused, "Chicken burger?"? Charley handed me the container to give Joshua and I showed him the contents.? Joshua pushed it away, saying, "I'm not hungry for chicken.? Can we save it?"? (He asks to save *everything*)? I assured him we could & handed the container back to Charley, who took it to the fridge.? Both of us were sad and a bit shocked that Joshua could not remember a conversation from 20 minutes earlier.? We didn't hear one word about the chicken again until two DAYS later, when Joshua asked, out of the blue, "Can I have my chicken burger?"? I immediately told him, "Yes," and got it for him, but I felt completely puzzled by how Joshua couldn't remember asking for the chicken the day he asked for it, but he could remember it two days later.? Our days now are filled with random memory lapses like that.? It's not a big deal, practically-speaking, and we roll with it and don't make a fuss about it, but emotionally, it stings every time.Today marks one year since Joshua's last surgery.? On November 12th last year, the ventriculostomy (externalized shunt with ICP monitor he'd had placed 5 days previously after his 6th chiari decompression, which was done on November 3rd, failed to bring his pain level to a level we could work with) was converted to an internal VP shunt.? It took another almost-3 weeks to work out his pain medication dosages sufficiently enough to allow us to take him home, but those 3 surgeries & month-long stay in the hospital, which were intended to get him through the holidays & maybe even to his 6th birthday, have given us another full year with Joshua.? If it weren't for the fact that he continues to decline & lose skills & cognitive function, I would entertain the thought that maybe Joshua could live for many more years.? It seems as though the VP shunt is draining enough fluid to compensate for what the scar tissue at the back of Joshua's head is blocking, which appears to be what has enabled him to survive so much longer than his doctors thought possible.? Because of that, it makes me wonder if he might continue to surprise everyone.? I don't honestly know if it's possible ~ experts would probably caution me that it's not probable ~ but whenever I contemplate these things, I am reminded that no one really KNOWS with any actual certainty how long Joshua could live since he's one of a kind with his particular conglomeration of medical conditions. Yes, I understand that no longer having the option of doing surgery will absolutely lead to Joshua's death, but since he's lived a lot longer than Dr. W thought possible after the last series of surgeries, I can't help but hope that maybe, perhaps, there's a chance we'll get to celebrate Joshua's 7th birthday (next March) after all.? As long as I don't focus too much on the things we see from day to day, it seems possible. I guess it all depends on how slowly (or quickly) things progress from here and only God knows the day that He will heal Joshua forever.I'm so tired all of the time.? Living in limbo, waiting for a specific awful event to happen, is tough and sometimes I feel like I want this to just be over with already so we can move on to the next thing, but in 100% contradiction to that emotion is the equally-strong feeling that I do NOT want this limbo to end because I have absolutely no desire to experience the next thing, which is life without Joshua physically present.? Yes, I realize it sounds impossible to feel two completely opposite things simultaneously, but it's where I'm at. I know it sounds crazy.? Maybe it is. Or maybe it's not, but I am.? That would explain so much, huh?? <small grin>39 people this Sign My Guestbook | Read Tributes Written November 7, 2012 11:42pm by Kate Parker Joshua is tired all of the time now.? Even when he's feeling good, he's tired & it physically shows.? Dark circles under his eyes, poor coloring, not a lot of energy to do activities.? He frequently stops to catch his breath and/or yawn.? He'll ask periodically throughout the day if it's time to go to bed and when I tell him he can lay down for a rest if he wants, he will usually say he doesn't want to go to bed yet (despite having *just* asked if it's time), but then he'll lay in my lap for awhile as I rock him in the recliner or he'll cuddle under a blanket on the couch.? After a short rest, he'll take a deep breath, struggle into a sitting position (if I'm holding him, I help ~ his spinal cord is so stuck in scar tissue now that he can't bend his back & sitting up/standing or laying down from a standing position is very difficult for him to do) and then resume playing on his iPad or watching a movie or playing a computer game.I suspect this increasing fatigue is due to condition progression, but I don't know with certainty.? I don't know what else it would be caused by, though, and I don't know any way to improve the situation.? We just let Joshua sleep when he wants to, for as long as he wants to.? About every third day, he sleeps for 20 hours or more.? The two days in-between, he wakes after 12-14 hours of sleep.? The long sleep days always find Megan, Adam & me telling each other things like, "Well, he DID go outside for 15 minutes yesterday," or "I guess hanging ornaments on the tree really wore him out."? Then we look at each other and realize how absolutely CRAZY we sound.? Yeah, hanging 6 ornaments on a tree so completely exhausts a 6.5 year old that they will sleep for 21 hours.? That's normal, right?? <weak grin>? I think we try to come up with excuses to make it seem not so depressing.? It's our feeble attempt to not be sad about what we see happening to our Joshie.I remain extremely thankful that Joshua is not forgetting who his family members are.? He forgets things throughout the day & will ask if we are going to do XYZ and I'll remind him, "Sweetie, we did that already."? He always responds, "Oh.... really?"? in a surprised tone, like he wonders how he forgot that so quickly.? We've decided that we can deal with his memory loss so long as it doesn't involve him forgetting us, his family.? It is my prayer that he never loses those memories because I honestly don't think my heart could stand having my little boy not know who we are anymore.? I know it'd be easy to think, "Oh, God won't let that happen!" but think about the thousands of people who develop dementia or Alzheimer's.? They forget their family members' names.... why should I think it couldn't possibly happen to Joshua, especially when he's forgetting so many other things?? I can't assume it won't, so I simply pray that it doesn't.?Written November 5, 2012 10:03pm by Kate Parker Joshua officially freaked both Adam & me out last night. He asked if we could go for a walk. It was dark & cold outside, but he still begged us to take him out, so we bundled him up in his wheelchair & left. He wasn't talkative at all and after we'd been out for 10 minutes or so, he asked if we could go home, so we headed back. As I pushed his chair, I ruffled the top of Joshua's head & told him I loved him & he told me he loved me forever & then, in the next minute (literally), he was asleep. That was unusual & unnerving, and Adam kept his hand on either Joshua's chest or his head as we walked the rest of the way home. When we got home & got Joshua into the house, both Adam & I bent over Joshua to see if he was still breathing because his eyes were half-open and his jaw was hanging open. We stared intently, waiting, then Joshua noisily inhaled and Adam & I looked at each other, realizing that without saying anything, we'd both wondered the same thing ~~ had Joshua wanted us to take him out for a walk to say goodbye? I know it probably sounds melodramatic and perhaps it is, but I think it is a good example of how everyone in my family is worried about Joshua these days. Despite being generally cheerful, he continues to lose skills & memories & the downward spiral is impossible for us to ignore completely, though we generally try to not dwell on it from hour to hour.Our mini-Christmas/Thanksgiving celebration yesterday was lovely.? We had our traditional Christmas breakfast, opened gifts, played with new toys & watched new movies, then ate a traditional Thanksgiving dinner & finished off the evening singing Happy Birthday to Megan & cheering as she blew out candles on her birthday cake.? Really, the day could not have gone any more perfectly.? Lots of pictures were taken, probably a dozen videos, and many more memories were made.? It was everything I'd hoped the day would be.? So what is the problem?? Nothing, really, except for the tinge of sadness that everyone felt & commented on at some point during the day. After all of the gifts were opened & everything was cleaned up & the kids were all involved with activities, I went upstairs to sit on the bed I share with Joshua and I had a short cry.? If you'd asked me what was wrong, specifically, at that very moment, I could not have put my finger on it. Sometimes a really happy & fun day can trigger the deepest sadness for me. Sarah asked me in the early evening if I thought Joshua would still be here for the real Christmas and I hugged her as I answered honestly, "I don't know.? I hope so."? She told me that lately, she's felt like crying almost every night when she goes to bed.? She's not the only one. This being in limbo is brutal... knowing that something awful is coming but not knowing when, and wanting the interminable waiting to end but NOT at all actually wanting that because of what that would mean.? It's the hardest thing I've ever been through so far in my life. It's definitely the hardest thing my children have been through, too, and I wish I could save them from having to experience it but obviously, I can't.? That is a whole other level of stress, actually... trying to help my children manage their sadness & worry & fears while managing my own.? And just when I think I've got a handle on it & we're doing all right, something big changes with Joshua & everyone has a mini-panic attack and I am reminded yet again that we're all just barely hanging on.One of our doctors in Portland is taking a job with an HMO and even though they are willing to continue advising our local doctor about Joshua, our local doctor is thinking that maybe it would be better to admit Joshua to the hospital (in Portland) to switch over some of his medications and get a new doctor there brought up-to-speed on my little guy so the new doctor could advise the local doctor once our current doctor goes to his new job.? I am having very mixed emotions about this potential change.? I trust our current Portland doctor implicitly.? I feel as though he understands Joshua & we share the same goals.? Trying to build rapport & trust with a new doctor in a matter of days when that doctor would be playing a major role in Joshua's care is unnerving to me to contemplate since I don't know if they would share my goals & vision for my son and if they didn't, I'd be stuck between a very hard place & an equally-hard rock.? If I'm not given any other option, I'll do it, but it's definitely not my first choice.? I'd much rather stick with the team of doctors we've got & not make significant changes to the lineup at this stage of the game.? Again, I don't know how much of a voice I get to have in this.? I've shared my thoughts with the Portland doctor via email.? I've briefly discussed it with the local doctor.? Thus far, nothing has been definitively planned as far as admitting Joshua to the hospital ~ at least, nothing I've been told about ~ so I'm hoping that the local doctor has dropped the idea.? I don't WANT Joshua in the hospital.? He gives up when he's there. He loses any zest for life & becomes listless and depressed, which is very frightening to witness.? If it's necessary to put him in the hospital to switch over medications, then yeah, okay, we'll do it & endeavor to make it as short a stay as possible.? But God knows I am hoping we don't have to do it.? With the care of a chronically-ill, medically-fragile child (or two, as the case is for my family) comes expected stresses, as well as unexpected challenges. Relationships get strained.? Some friendships don't survive. Many marriages don't, either.? I've lost friends over the past two years, some who I honestly thought were lifelong, always-gonna-be-there-no-matter-what people.? My marriage is also hanging by a thread.? I want to be able to say that Charley & I will make it through everything & emerge stronger than before, but I honestly don't know if that is true (please do not offer advice about this right now; thanks). And, as many of you have figured out & a few have asked about, one of the girls my family adopted is conspicuously absent.? I am not going to get into the nitty gritty details simply because I have enough going on without being labeled selfish & incapable of loving an orphan & all the other hateful things that people (typically in the adoption community) spout off to mothers who make choices they disagree with, but I will share that at the recommendation of our pediatrician, Hannah is in long-term respite care where she can receive the therapy & behavioral intervention that she needs & our intention is to let the family that has her adopt her from us.? That is why I claim 8 children, not 9.? If you think I suck for giving up one of my adopted kids, keep it to yourself.? Any negative comment will be deleted by a friend who will be moderating comments for me in order to ensure I don't have to read any nastiness. There are very few people reading this journal who have a true understanding of what we were living with before putting Hannah in respite care, but those who do understand completely support our decision.? If you want to throw stones, please drive to your nearest river & have at it, but leave me alone.? Thanks.I am tired.? I want Joshua to get better, not worse.? I want God to heal all of the dying children rather than believe that it's for something good that He is working out as part of His plan.? I realize I can't fathom the knowledge of God and yes, I do trust that His ways are better than mine, but just like a petulant child sometimes stomps their foot & says, "I don't LIKE this!" so, too, do I frown up at God sometimes & tell Him that I think all of this sucks.? It's hard to make sense of the senseless ~ or what seems senseless from my limited perspective.I don't have any idea how much longer Joshua will live.? When he's good, he's good & I can't fathom him dying any time soon.? When he's struggling, it's hard to believe he'll be with us at the end of the year.? But, as my friend who was here on Saturday reminded me, even when Joshua is "good", he still looks bad.? His coloring is either white, gray or purplish-blue.? He gets dark purple circles under his eyes if he is at all active (and "active" does not mean being busy like a typical 6 year old).? He has to stop what he's doing to catch his breath, which is audible most of the time.? He zones out during apnea episodes, which are more frequent when he's upright & awake than when he's asleep.? Even when he's what I would call "good," he isn't really GOOD; he's just better than when he's what I would qualify as "bad".? My friend's comments & tears reminded me of that.? So, overall, I guess I would say that things are status quo.? I'm thankful & grateful that we were able to have our celebration day yesterday and that it went so wonderfully well.? Bethany had spent the day/night in the hospital the day prior (the 2nd to the 3rd) after a medication problem, so we had wondered if there would be a delay in our plans.? It was a blessing to have no other mishaps occur and to be able to spend the day as a family, celebrating the major holidays of the winter together.? The best gift of all was Joshua's enjoyment of the day and watching him interact happily with his siblings.? I hope that my kids will always remember the day with smiles.? I know I will always cherish the memories that we made & I will forever thank Megan for choosing to celebrate her 21st birthday in such a loving, giving, joyful way.42 people this Sign My Guestbook | Read Tributes Written November 2, 2012 11:04pm by Kate Parker Please pray for Emerson, a beautiful 6 year old little girl who has had 2 multi-organ transplants and is fighting for her life in the hospital right now.? Her mother's latest update on Facebook (public page: ) is heartbreaking.Another precious little girl whose life I have followed for years is Ashley Kate.? She, too, is a transplant patient and she, too, is very sick right now.? Her mom blogs at .My heart is so sad tonight.? There's much I wanted to write tonight about Joshua, but asking for prayer for these two girls outweighs anything else.? Please, when you are thinking about Joshua, would you add Emerson & Ashley Kate to your prayers?? I know God is in the midst of each situation, but at times like this, I sure wish I understood His plans better because it makes no sense to me that so many little kids are suffering so tremendously.28 people this Sign My Guestbook | Read Tributes Written November 1, 2012 1:00am by Kate Parker Super-short note just to show you Joshua's costume from tonight.? We don't typically "do" Halloween, but we decided last night to go out if Joshie was up for it.? Emily & I went to Wal*Mart to see what kind of costume ideas we could come up with.? While walking around, I decided I'd make David, Sarah & Isaac dice because they could wear their regular warm clothes & coats and all they'd need were cardboard boxes painted white with black dots on them & holes for their head & arms.? Easy peasy.? For Joshua, though, I was stumped.? We thought about making his wheelchair into something like a boat or a train engine, but time was not on our side & Joshua doesn't sit upright in his chair ~ he's tilted backward.? Then I saw glow sticks and the idea popped into my head that I could cover Joshua in a black fleece blanket and use glow sticks to make a stick person riding in a lit-up wheelchair.? It took Megan, Emily & me about an hour to get Joshua's chair all decked out & then to get him situated in it & the glowing stick person arranged, but the results were *spectacular*!? He looked amazing in the dark and everywhere we went, we heard "oohs" and "ahhhs" and "Mom!? Dad!? LOOK at THAT!? AWESOME!"? Joshua kept smiling & saying, "I look good!"? At one point, a man asked if he could take a picture (without a flash, so there was no way to identify Joshie) because, as he put it, "That is the coolest thing I've seen all night!" It was so wonderful for Joshua to get stared at for all the right reasons for once.? Instead of kids staring at him and wondering why he is in a wheelchair, they were admiring his lit-up costume.? He loved it, as did his young siblings (who looked fantastic, too).? After being out for about an hour, we went to Charley's work so that Daddy could see how cute his kids looked.? We had a bite to eat & then headed home.? Honestly, the time spent out with Joshua tonight was precious & I am so thankful that he was able to rally enough to enjoy himself. He'd been so tired & worn out while we were getting him ready to go that I hadn't been sure it was a good idea to take him out at all.? But he did it & he had fun. I am happy that David, Sarah & Isaac got this night of making special memories with their baby brother.? It was perfect.47 people this Written October 31, 2012 5:01pm by Kate Parker Today is an odd day.? I'm finishing up Halloween costumes and we're decorating a Christmas tree in anticipation of our mini-Christmas celebration on Sunday.? We're adding in Thanksgiving, as well, with plans to have a traditional meal on Sunday afternoon. Oh yeah, and Megan's 21st birthday.? Can't forget what started this whole "Holidays Wrapped Up Together" ball rolling!? <grin>? Hopefully, everyone will be feeling good & it will be a really wonderful time.? Joshua continues to have loss of memory.? He doesn't always remember something from hours earlier, much less things from days or months ago.? Everyone is getting good about calmly repeating ourselves or reminding him about things without pointing out that he's forgotten the details because it upsets him when he realizes that he's having trouble remembering things.? As long as we act like it's no big deal, he handles it better.? The trick is to not let a flash of dismay or sadness cross our faces when Joshua says, "I don't know," or gives a blank expression in response to a question or comment that would typically spark a conversation. It's difficult having him aware that he's forgetting things; it would be easier (I think) if he was not bothered by his memory loss.? It's painful for everyone involved.Dr.'s T & S are trying to get a plan hashed out to change some of Joshua's medications.? Dr. S thinks Joshua will need to be admitted up in Portland so Dr. T can oversee things, but she'll be chatting with him to hammer out the details.? If we have to take Joshua up north, it'll probably be in the next couple of weeks (that's what Dr. S told me today, anyhow).? I am in no rush to put Joshua in a hospital again & don't really want to do it unless I can secure a couple assurances from the doctors ahead of time, but I'm waiting to hear what they come up with before laying out my requests.? I have an (irrational) fear that if we put Joshua in a hospital, we'll never get him out again, so I'm fighting against that right now, too.Anyway, I need to go finish the kids' costumes ~ I've been working on & off while other things were going on ~ so I'll wrap this up.? I know I didn't give as many details as I normally do & that is only because there are a few things going on behind the scenes that I can't talk about yet.? I wanted to touch base, though, and let you know that Joshua is okay and doing about as well as he can, considering the circumstances. 23 people this Sign My Guestbook | Read Tributes Written October 25, 2012 11:26pm by Kate Parker Two entries in one day.? Unusual, I know, but something happened a couple of hours ago that I need to document.Emily & I had to run out to the store to pick up diapers for Joshua tonight (I thought we had another box, but oops, we didn't) and he asked if he could come, too.? Since he didn't wake up today until 6:40pm, I was thrilled that he wanted to go out with me & immediately said, "Let's get your pants, socks & shoes on!" While we were there, he was asking, "What that?" or "What that called?" as he pointed at things. A shirt, a coat, juice, a sign, stickers, etc.? Everywhere he looked, he found things he could not identify & would point and ask me to name the item. He could not remember what they were. Then, when we were about 1/2 mile from home, he asked, "Are we almost there?" I told him to look where we were and he did not recognize our street, so I assured him we were almost home. When I pulled into our driveway, he asked, "Who house is that?" I looked at him and realized he was not kidding in the slightest. I quietly said, "Joshie, that's our house." He pointed at the garage and asked, "And who house is that?" I told him, "That's our garage, Baby. It's part of our house." He exclaimed, "REALLY?!? WOW!" Then, while I was getting him out of the truck, he asked again, "Ih dat wiwwy our hout?" (is that really our house) I told him again that yes, it really was.Once he was inside, he was fine. He recognized everything in the house. I was thinking about what could be going on and wondered if his long-term memory is failing. My big kids and I nonchalantly quizzed Joshua, asking things like, "Do you remember when we went to the beach last year?" and "When we got Slurpees after going to the park, what flavor did you get?" He didn't remember going to the park, much less getting a Slurpee (that happened last week). He does not believe he's ever been to the beach. Just now, he asked, "How do I shoot?" for an archery game on the Wii that he hasn't played in months.You know, I can put a positive spin on his regressing & acting like a 2-3 year old by saying he's cute and it's sweet or funny because if I don't think about WHY it's happening, it IS adorable, but I can't find a way to spin his losing memories. This really hurts.34 people this Sign My Guestbook | Read Tributes Written October 25, 2012 7:12pm by Kate Parker Picture taken at the park, May, 2011.? Explanation of why I added it to this journal entry down below.Last night, after Megan & I had said goodnight to Joshua & were relaxing toward sleep, Joshua made a comment about going to heaven & how he gets to choose (when he goes).? I asked if he wanted to go soon or if he thought he'd wait awhile and he answered that he didn't know for sure, but he thought it might be pretty soon.? I had my arm wrapped around his waist (we were both laying on our sides) and when he told me that, I gave him a little squeeze.? Then, wondering, I asked, "Joshie, do you ever see angels?" He answered, "No."Megan then asked, "Do you see shiny people?"? (She later told me she doesn't know where that phrase came from, as we've never referred to angels as 'shiny people'.? She said it just popped into her head.? In hindsight, we both believe that was God-inspired).Joshua told her, "Yes!"Megan asked, "Do they have wings?"Joshua replied, "Yes."Megan said, "Buddy, those are angels," and Joshua was surprised, "They are?!?"? Megan confirmed, "Yep, those shiny people are called 'angels'."? Joshie, trusting his big sister, agreed, "Okay."I asked, "Do they talk to you?"Joshie said, "Yes.""What do they say?" I inquired.He thought for a moment, then answered, "I don't know."Megan offered up the idea that maybe he understands that they're talking to him, but he can't articulate what they say.? Maybe they speak to his heart & he understands that, but they don't speak verbally.? We don't really know and Joshua didn't say anything at this point in the conversation that might have shed some light on what he thought.I went on, very curious, asking, "Where do you see the angels?"He confidently responded, "Outside."Megan and I both asked, "Really?? Outside?"? Joshua emphatically told us, "Yes.? They are outside."I told him I thought that was awesome that angels were watching over him and talking to him.? I said that I wished I could see the angels, too.? Joshua said, "Next time I see them, I'll ask if they will stick around so you can take a picture."? Megan & I chuckled & as I hugged Joshua again, I told him, "I would love that!"? Megan added, "Joshie, I think it would be so cool to see a picture of an angel!"? He replied, "Okay.? I'll see if they let Mommy take a picture.? I really really really want a picture, too!"? Then he paused for about 5 seconds before going on, saying, "I think they'll say 'Sure!'"? Megan and I laughed & told him again that we thought that would be really neat.? We thought the conversation was over and said goodnight to Joshua once more, but he wasn't done yet and made that clear by ignoring my "Good night, Baby," to ask, "I know angels take me to heaven, but can you change your mind?"? I was a little confused and asked, "What do you mean, Joshie?? Change your mind about what?"? He said, "Angels take you to heaven, but can they bring you back if you change your mind?"? I hugged him close, then answered, "I know that there have been people who say the angels took them to heaven & they spent some time there looking around and then they came back to their families again, so yes, sometimes that happens."? Then, after swallowing hard, I quietly added, "Joshua, when the angels take you to heaven, if you look around and see how wonderful it is and if you are having a super-lot of fun, it's okay if you don't want to come back here.? We're all going to be coming to heaven, too, remember?? So you aren't going to be in heaven all alone."? He turned his head, gave me a kiss as he reached backward to wrap his arm around my neck/head in a hug (he's the only kiddo of mine who has ever hugged me that way ~ the picture attached to this entry shows what I'm talking about), then said in a satisfied voice, "Okay.? I don't know if I will change my mind."? I hugged him back & assured him that I would understand if he didn't.If you are thinking it probably took everything in me to not beg Joshua to change his mind & come back if God gives him that option, you'd be right.? I wouldn't wish him to come back & hurt like he does now, but I am 100% sure I will wish with every fiber of my being to be able to see & hold him again when he's no longer here.? However, as with every conversation about heaven & dying that Joshua and I have, it's not about my feelings or making me feel better, and I am not going to burden him with my sadness because I don't think that is the right thing to do. My focus is on wanting to make sure he knows where he's going is an amazing, wonderful place that he is going to absolutely love and that yes, we'll all be there together, but we'll arrive in heaven at different times, and it is totally okay that he gets to go first.? The few times Joshua has realized I am crying & asked me why, I have told him that I'm sad that he gets to go to heaven first because it is going to be so awesome & I want to go with him. He'll tell me something like, "Don't cry; you'll come, too, Mommy," in a tender, sweet voice and then he'll giggle and brag, "But I go first and you have to waaaait!" in a singsong voice.? Bottom line is that he's not afraid of where he's going, he's not afraid of dying, and he knows the rest of the family will be with him again in time, which is all that matters.? I'll deal with my broken heart after he's gone.It's amazing to me that Joshua is seeing angels now, but I'm not surprised since I've heard of children (and adults) seeing angels and figures "made of light" who keep watch and/or visit the person before they die.? It is comforting to know that God has sent some of His heavenly beings to Joshua and that He is letting us know through Joshua that angels are with him. ? ? Written October 22, 2012 9:19pm by Kate Parker Today was a "sleeping" day.? After the past two days filled with active play, I wasn't surprised that Joshua didn't wake up until almost 5pm.? It's the price he pays for having fun.He's feeling all right today.? Comfortable & happy, which is great.? Ironically, I'm having a bit of a come apart at the moment, which is insane considering that Joshua is pretty okay these days. But, insanity aside, I am battling a deep sadness & fighting against a fear that Joshua could 'tank' at any time.? A year ago at this time, Joshua had just gotten out of the hospital & was doing relatively *great*.? He was walking around, going outside to play for short periods of time, etc.? By the end of October, he was unable to sit up without extreme pain & was begging me to call Dr. W to take the "ball" out of his head.? On November 3rd, 7th and 12th, he had brain surgeries.? Without those surgeries, he would not have lived to see Christmas, much less survived another year! So... here we are now, with Joshua doing relatively well.? There is zero chance of any 11th-hour surgeries, which means that if he starts to really tank like he did last year, we'll know it's almost over.? I don't want it to be almost over.? I just don't.? Most of the time, I don't think Joshua is anywhere near dying.? I mean, yes, he's obviously declining & I am not in denial that yes, he is actually dying, but it doesn't strike me as an imminent thing most days.? Still, I can't shake the memory of last year and how he went from happily playing with his brothers & sisters each day to holding his head on the ground, crying for hours & begging for me to make it stop hurting, with increasing periods where he'd stop breathing & we'd have to jostle him to get him going again.? It happened before & I know it could happen again.? I suspect that eventually, he will have a decline that we can't stabilize, and I'll know the end is at hand, but as we enter the period surrounding the holidays, I can't help but pray that God will allow Joshua to stay as "okay" as he currently is until 2013.? It's a lot to ask, I know, but the Bible says to make our requests known to God, so why not go big?? In the end, His will is what is going to happen, but just like my kids ask for things they suspect they don't have much chance of getting, I ask my Father for similar things.? Can't hurt to ask!? And who knows, God might decide to grant my request.? There are multiple other "issues" swirling about in my life that contribute to my feeling down these days, but I am trying to keep my attitude where it should be & my focus on what is important.? Some hours I succeed.? Other hours, I fail.? Overall, though, despite a pervasive sense that I have no idea what God is doing and a feeling that I'm currently walking alone on this road He has me on (which I know in my head is not at all true, but feels differently), I refuse to give in to despair because I'm pretty sure if I did, I'd fall so far down into a hole that I would not get out for a very long time & I can't do that to my family. I know that God is still God, no matter what, and He is working out something for not only Joshua's good, but mine, as well.? I won't stop trusting Him just because I can't see what's up around the corner & the road is really dark.? And no, I'm not saying all of this to sound pious.? I'm writing it out to remind myself of what I know to be true & what I know I need to do.? :)This song has been 'speaking' to my heart a lot the past couple of days.? I love that God uses music to bring me comfort no matter what circumstances in life look like.? He's pretty amazing that way.? I do hope you'll take a couple of minutes to listen to this song & pay attention to the lyrics.? It's BarlowGirl's "I Believe" and it is really a beautiful song with profound meaning.? people this Sign My Guestbook | Read Tributes Written October 21, 2012 9:12pm by Kate Parker Joshua is usually at his best when he first wakes up in the afternoon.? When he is feeling good (for him), he enjoys playing with his brothers & sisters, which makes me happy to watch.? As he has lost stamina & skills, the manner in which Joshua can play has changed, so the older kids have adjusted & modified their games to accommodate what their baby brother can still do.Today, Joshie & Isaac were playing "secret agents".? Typically, that game for my boys would involve a lot of hustling around the house, hiding behind furniture, ducking & shooting their toy guns, but all of that is now beyond Joshua's physical capabilities.? Today, Isaac made his brother a tiny, snug "fortress" out of couch pillows, including a pillow to be sat on (for comfort).? Then, while Joshua sat ensconced in his "super secret agent hideaway," Isaac did all of the jumping, rolling & ducking, keeping up a steady patter of commentary of what was happening so that when the "bad guy" came into view, both boys could shoot at the imaginary foe.? It was absolutely perfect.As I watched my two youngest boys play together, I was struck by the love they share and their sweet relationship. Joshua is blessed to have many siblings & one of my joys is witnessing the unique ways he interacts with each of them.? Isaac rarely talks about what he sees happening to Joshua, though I know he is aware of it all; instead, he shows all of us how to push past our sadness to enjoy our days with Joshie to the fullest.? Today's game of "secret agent" reminded me of that wisdom yet again ~ and brought lots of smiles in the process!? 43 people this Sign My Guestbook | Read Tributes Written October 20, 2012 10:40pm by Kate Parker Today's picture was actually taken last night when Emily was playing hide-n-seek with Joshua.? He was so giddy about how well he was hiding & how tough it was for his sister to find him.? I taped part of their game & after watching the video tonight, Megan, Emily, Sarah & I agreed that it was hilarious.? Last night, when I was getting Joshua ready for bed, he began tip-toeing along the bed.? When I asked what he was doing, he said in his not-at-all-quiet-voice, "I keeking!"? "You're sneaking?"? I asked and he affirmed that yes, he was sneaking.? I asked why he was sneaking & he answered that he did not want to wake up Megan.? I suggested that perhaps he should get into bed if he wanted to not wake up anyone (Adam, Emily, Sarah are also upstairs & all were asleep) & he saw no reason for that, continuing to tiptoe around while loudly announcing, "I tink I dood at keeking!" (I think I'm good at sneaking)? Suddenly there was a droll voice calling out, "Uh, not so much!"? I busted up, laughing, and Joshua giggled as he tiptoed toward me, then said in an incredibly cheery & satisfied voice, "Megan's awake!"? I was still laughing but managed to choke out, "I don't think you're very good at sneaking, Joshie."? He insisted, "Yes, I IS!"? with a huge grin on his face.? Shortly thereafter, he let me put him in bed & the game was over, but oh my goodness, it was a priceless moment that I hope to never forget!? :)Written October 20, 2012 1:38am by Kate Parker I finally heard from Dr. T.? What I learned from him left me feeling like crying (which happened a little while later). He reminded me that he doesn't have outpatient privileges (he's not supposed to give orders for a child who is not admitted to the hospital, so he acts in an advisory capacity to help our pediatrician know how to manage Joshua's prescriptions to best deal with his pain), then told me that he has done everything he can for Joshua within the limitations on his practice privileges because it's the right thing to do, but he can't take things much further.Also, with regards to hospice, he said that because of his lack of outpatient privileges, he would not be able to participate in Joshua's care if Joshua were enrolled in hospice. That would leave us with no one giving Dr. S advice about how to manage Joshua's symptoms other than the hospice medical director, who made it clear last year when Joshua was on hospice that he does not know what is best for a pediatric patient as complicated as my son. That left me wondering what I was supposed to do.? I know we WON'T put Joshua on hospice, of course, because we can't lose Dr. T's services since there is no one else locally who can do what Dr. T does for Joshua. But he's feeling he can't take things much further, so NOW what??? I know he went out on a limb for Joshua last December because he talked to Dr. W, who didn't think Joshua would live past his birthday in March if he even made it that far. I think Dr. T was willing to help because he knew we didn't have anyone else and he thought it would be for only a few months.? No one had any idea Joshua could possibly live another year as a result of the surgeries Dr. W had done, so there was no long-term plan for how things would be managed if he did.? It's put us in a bit of a rock vs. hard place position.Oh, and we can't put Joshua on a PCA for pain management because Dr. T said that at the doses of opioids Joshua is getting, he would need robust support to maintain a PCA at home and that would require good home health care services. We already know those don't exist here. When Joshua needed his port dressing changed while on TPN last summer, the home health care nurse traveled once a week from 75 miles away. When we had a problem with the port & called for assistance, we were told the nurse could only come once a week due to her schedule and the fact that we were so far away. She was the closest nurse we could get to come here, too ~ calls were made to multiple agencies with no success (the joys of living in a small town in rural southern Oregon). So no, there won't be any "robust" home health care services that could support Joshua being on a PCA pump at home. Hospice wouldn't manage it, either. They couldn't even get Joshua IV fluids at home without a major upheaval, which played a part in why we ultimately removed him from the hospice program. Yes, hospice *can* be fantastic, and the hospice program available to us *was* full of lovely, kind-hearted people, but they were not able to manage Joshua's needs.? Their experience was not with pediatric patients, much less a pediatric patient with an uber-rare condition. It was not a good fit.? And now, after hearing from Dr. T what would be necessary for Joshua to be on a PCA pump at home & discussing the situation with Dr. S (who is fully aware of the abilities & limitations of our local hospice program, having worked with them last year during the time Joshua was enrolled), we agree that hospice isn't going to be a route we can pursue.I asked Dr. T what he thought we should do regarding the pharmacists being at the limit of how much oxycodone they could get Joshua each month. I asked if we should switch him to higher methadone + lower oxycodone and he said that was what he'd hoped to do last year when he took over Joshua's pain management, but Joshua's body has been on a different timeline than his (Dr. T's) ambitions. He is going to talk with Dr. S to discuss strategies for making the switch.? Dr. S & I talked today about how it might be a good idea to admit Joshua up in Portland so that Dr. T can oversee changing over the medications.? I don't know if that is going to happen or not; we'll see what Dr. T & Dr. S come up with.? Something will need to change, though, since we are at the limit of oxycodone that can be dispensed.So... I have to assume that Joshua won't need a PCA pump and that we'll be able to manage his pain with oral meds alone since the door to a home PCA has been closed. If Joshua starts vomiting a bunch and needs to go back to the hospital, Charley & I agree that I will drive Joshie to Portland because he can get inpatient care from Dr. T up there.? Our goal is to keep him out of the hospital and we don't want him to die there because Joshua doesn't want to die in a hospital, but I am trying to get to a place where I am okay with whatever scenario God brings about & if Joshua needs to be in a hospital in order to keep him comfortable at the end of his life, then that's where he'll be.? I don't want to be so stuck on wanting things to happen a certain way that I fall apart if they don't go "my way".? I want to be able to peacefully accept however the end comes about, even if that reality looks completely different than what I thought would be best.? I really do know & believe that God's plan is and will be better than mine.? It just doesn't always feel that way.??We continue to see signs of neurological deterioration in Joshie & that's always hard to admit.? He can't calm himself down if he gets upset about something anymore ~ the ability to self-regulate is just gone.? He's like an overwrought toddler... crying & wanting to stop but not being able to.? We have to physically contain him so he can't flail around & rock him until he stops crying, which can take over an hour sometimes.? I know it may sound like Joshua is just being a spoiled brat & we shouldn't cater to his awful behavior, but that's not it at all.? It's not deliberate & it's obvious to anyone who witnesses a meltdown that it is not something he can control.His speech gets more garbled as time goes on.? If he's saying short sentences, he's still pretty understandable (to his family members, anyway).? As long as we have some contextual clues, we can figure out what longer sentences or phrases are.? But if we have no idea what he's talking about when the words start coming out of his mouth, we're in trouble because we won't have any idea what he's saying.? I think one of the most-awful feelings these days comes from seeing the look of defeat in Joshua's eyes & hearing him say dismissively, "It doesn't matter," when I have to ask him to repeat himself because I did not understand what he was trying to tell me.? I hate the times I cannot understand his speech.? I always feel like crying when it happens because I feel like I've let him down.His style of play has regressed.? He is very into "hiding" and then us having to find him, but he hides in plain sight, believing that if he can't see us, we can't see him.? He will cover his head with a blanket & giggle as someone asks, "Have you seen Joshua?? Where did he go?? He was RIGHT HERE a minute ago!"? He then delights in pulling the blanket off his head & yelling, "I is here!"? It's adorable & he's cute as can be, but it's also sad because he used to be good at playing hide-n-seek and at the age of 6.5, to see him playing like a toddler is both disconcerting & sobering.? It does beat the alternative, though, so while I'm sharing what is going on, please don't confuse my words with complaining.He's become very lovey-dovey as of late.? He's hugging and kissing everyone throughout the day & he makes me smile when he sings out, "Mommy mommy mommy, I love my mommy!"? I sing back to him, "Joshie Joshie Joshie, I love my Joshie!" and he giggles every time before singing to me again.? A friend who has lost a child wrote me a note telling me to take more pictures than I think I need & to make a memory Every. Single. Day.? I'm taking that advice very seriously & will try to write each day what stood out & needs to be remembered.? For today, in addition to the memory of Joshua playing hide-n-seek with Emily & laughing as he figured out he could lock a door to keep her from coming to get him, I marveled at the bartering prowess my son possesses.? Despite cognitive impairments in multiple areas, he can still bargain.? He'll ask if he can have 3 hours of on the computer (he can't tell time, so it's just a number to him & we can tell him his time is up after 1 hour and he'll be fine with it) and when I tell him, "Sure," he'll immediately respond, "How about 5?"? I grin & say, "How about 3?" and he comes back with, "How about 4?"? I'll say, "How about 3.5?" and he'll again ask for 4.? I'll give in and he smiles, says, "I win!" and limps away, utterly pleased with himself.? Tonight, he finagled $3 from Emily when the deal they'd made originally had been for $1.? I'm tellin' ya, the child has a gift.? Or maybe he was born into a family of pushovers, because when it comes to Joshua, we definitely fall into that category.? :)One last thing & then I need to get to bed for the night.? Our house is decorated for Christmas and while it feels really weird to have holiday decorations up in mid-October, the smiles we see from Joshua when we plug in the lights at night make me feel happy.? We'll get a tree as soon as they become available for sale and we're looking forward to decorating it with Joshua.? He LOVES "Cwit-mit cwees" and can't wait to get one.? For that reason, neither can I.43 people this Sign My Guestbook | Read Tributes Written October 17, 2012 12:21am by Kate Parker Still no word from the palliative care doctor.? Well, he left a voicemail on my cell phone last Thursday afternoon telling me he was sorry it had taken him so long to get back to me & he saw that I'd emailed him & he would shoot me back an email later that day.? I originally emailed him on October 9th.? The voicemail came on the 11th.? No word since then.? I did send a polite, short "reminder email" in the late afternoon on the 12th.? I really don't know what is going on to cause me to not hear from him.? That isn't the norm at all.? It is a bit disconcerting since he's in charge of managing Joshua's medications & I don't feel like I can make any decisions regarding what we're doing or how we're doing it without discussing it first with Dr. T.? I guess that since we're managing Joshua's symptoms all right at this point, it's not a crucial situation, though, so I'm kind of shrugging it off right now.? I can always try to track him down the next time I'm in Portland with Bethany to find out what the heck is going on.Joshua broke his right foot last night.? He was walking & twisted his foot a tiny bit, which resulted in a loud cracking sound that Charley heard as Joshua fell to the floor, grabbing his foot.? I asked him what had happened and he said, "I cracked my foot hard & now it hurts really badly."? We could see a bruise coming up along with a bump on his foot and knew that yep, he broke it again. The fact that he could feel pain in a foot that has almost zero sensation (nerve damage caused by multiple episodes of tethered cord) spoke volumes. It's pretty sad that he can break bones simply by walking, but it's not like this hasn't happened several times already.? I gave Joshie a small dose of oxycodone to help offset the pain in his foot and we continued our evening.? We debated taking him to the doctor's today, knowing she'd send him for an x-ray to confirm the break, but ultimately decided against it because it would have been a multiple-hours-long outing that would have left Joshua exhausted and at the end of it all, we wouldn't have an outcome that was any different than if we stayed at home & did nothing.? He can't be put in a cast because the lack of sensation means he can't tell if there's rubbing or if a cast is too tight, so there'd be no way to know if a pressure sore was developing.? The risk of that (pressure sore), which would lead to the risk of an infection, is too high, so all we do with a broken foot is use a splint held on with an Ace bandage.? Dr. S established this protocol in July, 2011, when Joshua had 7 broken bones in his right foot & 4 in his left, which alerted us to the severe demineralized condition of all of his bones.? On the bright side, because he has almost no sensation in his feet, he doesn't feel any serious pain & can still walk around on his foot, albeit with a limp.? Yes, we will try to keep him off of it as much as possible, but in the grand scheme of things, if his foot isn't bothering him, we aren't going to worry about it.? We want to let him do whatever he's physically capable of & desiring to do even if that's just walking from the living room to the kitchen to get a snack.? No one is going to limit his participation in an activity if it's something he wants to do.? Not at this point.We took him to Wal*Mart this afternoon to pick up a pair of shoes since it's getting colder & on the occasions where he wants to go outside for 15-20 minutes, we want him to be able to do that.? He's in size 1 now.? The shoes he picked out are black with a neon lime green stripe running around the edge of the shoe.? He liked them because "they match Mommy's!"? I have a pair of gray Nikes that have fluorescent red, yellow & lime green accents and Joshua thinks they're very cool.? LOL? So now he has shoes like mine & he thinks he is hot stuff because of it.? Too sweet & very cute how little things make him so happy.Megan (Joshua's oldest sister) has her birthday coming up in a few weeks.? She has requested that we put up our holiday decorations & have a "mini Christmas" for her birthday just in case Joshua is not here on December 25th.? So, at the risk of seeming crazy, that's what we are going to do.? We even have a live fir tree that Charley has been growing for years that we can decorate.? :)? Each of the kids will get a gift to open, we'll bake sugar cookies (Joshua LOVES decorating them) & other treats, the house will be decorated with strings of lights & garland and, like Megan said when she presented the idea to her father & me, Joshua will be thrilled, which is all she wants for her 21st birthday.? If Joshua is still with us when the real Christmas comes around, then yahoo!? We'll have another celebration!? If he's not, though, we'll be happy that we did our mini-Christmas and had one last holiday with our Joshie.43 people this Sign My Guestbook | Read Tributes Written October 14, 2012 10:05pm by Kate Parker I haven't heard back from Joshua's palliative care doctor yet, so I don't have any information about the "do we switch him to a PCA pump & TPN now or not" decision.? I do know that if we put Joshua on a PCA pump & TPN, we are also considering enrolling him in the local hospice program again because while it wasn't a good fit for Joshua last year, it might be worth looking into if he gets put on a pain pump & IV nutrition.Some of the benefits of having Joshua on hospice would include:~ having a nurse who could come over to re-load IV fentanyl in the PCA pump~ dressing changes that could be done at home versus my having to drive Joshua to the hospital (a process that is becoming increasingly difficult as he feels less well when taken out of the house)~ nurses who would pick up prescriptions & save me the effort & time away from Joshua to do it~ assistance for the other kids in the form of play therapists & counselors available for them to talk to~ someone to call when Joshua is imminently close to going to HeavenWe did experience some difficulties with our local hospice program, mainly with communication, unavailability/difficulty getting someone to help us when it wasn't regular business hours, and their inexperience with having a hospice patient who was a child.? The main reason we withdrew Joshua from hospice last year was their inability to provide IV fluids when he got dehydrated as a result of illness.? Children on hospice are different from adults on hospice & the hospice organization in town was not familiar with those differences at the time we were working with them. I don't know if anything has changed, but Charley & I are considering putting Joshua back on hospice since many issues that were present last year have been resolved & wouldn't enter into consideration now.? We are waiting to get guidance from Dr. T before making a final determination.As for how Joshua is currently, that's somewhat hard to pinpoint.? Generally, part of each day is really good, but how big that "part" is can vary widely.? He was able to go outside on our porch with David, Isaac & Sarah yesterday for about 20 minutes, where they all sat & played with sidewalk chalk together while talking.? Having good times wears him out quickly, though, and leaves him sweaty, gray & working harder to breathe.? When he came inside yesterday, there were dark purple circles under his eyes & his skin was gray & mottled.? I knew he was having significant apnea & oxygen deprivation, but I didn't regret letting him go outside with his siblings.? I am happy when they get to spend time doing something fun with Joshua.? We're still working on getting little mementos made, but finding times when Joshua is physically up for doing something and wants to cooperate are a challenge.? I told him I wanted to put our handprints inside our special book that we read at bedtime and he asked, "So you don't forget me when I'm gone?"? Yeouch. I hugged him close & assured him that I will NEVER forget him... that I could NOT forget him, ever!? I don't know how he could have thought that was even a possibility. Megan, Adam & Emily were all in the room & immediately told their brother the same things ~ no one will forget him, how could we ever forget him, etc.? Then I reminded Joshua that we're all going to be in Heaven together, so even though he gets to go first (lucky boy), we're all coming right after him! He was worried that he'd be all alone, so I reassured him in the same way I reassure myself ~~ I told him that going to heaven is going to be like walking into a new house.? He gets to go in the front door first, and he is going to look at everything, then turn around to tell me what he's seen and I'm going to be standing right behind him, waiting to hear it all because I came in the front door after him. After hearing that, Joshua nodded & said, "Okay.? Good."? Then, feeling better, he held my arm that was wrapped around his side and closed his eyes to go to sleep.? Do I know if that scenario is accurate?? No, of course not.? I haven't yet been to heaven, so how could I?? What I *do* know is that time is different in heaven than on earth and a day is like a thousand years (2 Peter 3:8).? If that means a day in heaven is like a thousand years on earth, then it's logical to reason that everyone who dies in a 1,000 year span all enter heaven on the same day, albeit at different times during that day.? As such, everyone in my family will be in heaven on the same day, which I interpret to mean Joshua will never be aware that he is without his family beside him.? If I'm wrong, I won't know it until I'm in heaven and at that point, it won't matter.? If I'm wrong, it's not going to matter to Joshua once he's in heaven, either, because he will have a perfect understanding (that I don't yet have) of things, so it will be okay for him and he isn't going to be sad (the Bible promises there are no tears in heaven ~ Revelation 21:4).? For now, my goal is to be as honest as I can in such a way that it reassures him and calms any anxiety he has surrounding dying. I don't want him feeling scared or worried in any way; rather, I want him to be looking forward to going to heaven in the same way any other kid would be excited about going to Disneyland.? The truth is that heaven is THE best place anyone could ever comprehend being & we should all be totally jazzed to go be with Jesus for eternity, so I want to convey that to Joshua.? He doesn't need to spend one moment thinking about how sad we will be without him.? We'll think about that, instead.? After conversations like the one we had, it's not like I can avoid thinking about it.Written October 10, 2012 12:22am by Kate Parker Thank you for praying for wisdom to know what to do.? Please continue those prayers.? I did have a series of things happen today that made me think perhaps God is pointing Charley & me in the direction we're supposed to go, but I'm not sure yet.Dr. T (palliative care doctor) increased Joshua's methadone dose today, which I am hoping is going to help at least a little.? So far, all we're seeing is more sleepiness & emotional fragility, but not a significant decrease in pain; however, it'll take a few days to really assess what kind of impact the increase is having, so there's a chance we'll see his pain go down a bit. This afternoon, I went to pick up Joshua's meds. The pharmacist told me they are running into problems getting Joshua's oxycodone because the amount hits their ceiling of what is allowable per the DEA. He suggested we consider changing Joshua to IV meds or asking his palliative care doc to add a different narcotic so we can reduce the amount of oxycodone he needs.Considering that Joshua isn't metabolizing things well anymore (he's lost a little over 2.5 pounds in the past 6 weeks & is very thin, with his ribs & shunt tubing clearly visible through his skin, and I am having trouble getting his daily fluids/formula into him because I can't run it faster than 3-4 ounces per hour or he gets sick) and there's this problem with obtaining enough oxycodone each month, I emailed Dr. T tonight to ask about transitioning Joshua to IV fentanyl via PCA pump and TPN for nutrition (food via his central line, thus avoiding his stomach/intestines entirely). Joshua isn't doing well with the regimen we're currently using of oral meds for pain & formula for nutrition, so we need to do something different, and I don't really see how we are going to manage his symptoms as he declines without moving him to IV fluids & pain meds.? He doesn't want to be accessed all the time, but Megan and I explained to him that if the pharmacy can't get enough medicine for him, his head is going to hurt A LOT and we don't want that to happen.? I told him that if he throws up a lot, we will have to take him back to the hospital to get fluids and pain medicine there, and that is something he wants to avoid.? He finally compromised with us, saying that he wants to wait until we can't get him medicine anymore and then we can change things.? It makes me sad to be at this point where I'll have to ask him to endure weekly procedures that really distress him, but there doesn't seem to be a better option.? Even if Dr. T can come up with a different oral medication to try, it isn't going to increase Joshua's ability to metabolize & utilize the drug effectively.? The whole situation is discouraging since it highlights the reality of Joshua's decline, but having the pharmacist telling me he is having trouble getting all of the oxycodone Joshua needs did help with the decision I was wrestling with.?? If we thought he was going to die in the next week, we would probably make a different decision, but the adults in my family believe that Joshua has more time than that remaining with us and we are not going to do anything to hasten his death.? Our primary goal is still to keep Joshua comfortable as he declines & to do what we can to enable him to enjoy whatever activities he wants to do for as long as he can do them.? From our perspective, it seems that utilizing a PCA pump & TPN will help us achieve that goal.? Now we'll wait to hear what Dr. T thinks.40 people this Sign My Guestbook | Read Tributes Written October 8, 2012 12:08am by Kate Parker Joshua is still sick, but I will do everything I possibly can to keep him from having to go back to the hospital.? Things happened and words were uttered by doctors while he was inpatient that convinced me I needed to get him out of there as quickly as possible & that I needed to keep him out.? As such, I am keeping him on a continuous feed of water (28 ounces) + formula (32 ounces) running at a very slow 3 ounces per hour for 20 hours per day to help keep the chance of vomiting down.? I'm also giving him an anti-nausea medication (Zofran) every 8 hours rather than every 12 hours, as we used to do.? There are some decisions that I have to make regarding pain medication and the route by which it is delivered.? Right now, Joshua gets everything through his g-tube.? Medication goes into his stomach, gets pushed into his small intestine & is absorbed into his blood stream, where it can be used by his body to give him pain relief.? Last week, when he had labs drawn, some of the values caused Dr. S to believe that Joshua might not be metabolizing his formula very well anymore.? When he was was weighed at Dr. S's office on Friday before getting admitted to the hospital, we found Joshua had lost 2.6 pounds in the past 6 weeks.? This made me think that Dr. S is probably correct about Joshua's inability to properly metabolize food now.? That led to my wondering if he's able to metabolize the medication he is getting, especially his pain meds. The pharmacist told me Joshua would be better served by having a PCA pump with straight fentanyl in it than needing to take almost an ounce of oxycodone at every dose.? On the surface, it seems like a really great idea. We could give him IV medication, which would eliminate the concern about his ability to metabolize medication, and we wouldn't have to worry about him having issues with vomiting because even if he began throwing up, we could still give him pain meds.? Because he'd have his central line continually accessed, if he did begin throwing up, we could easily add IV fluids & TPN (nutrition via IV) and thereby keep him hydrated, fed & his pain managed.? Sounds ideal, right?? Yeah, but for every yin, there's a yang, which means there are drawbacks as well as benefits.Switching Joshua to IV meds would mean keeping his port accessed at all times.? He would require the port needle be changed (de-accessing, then immediately re-accessing) and dressing changes once a week. Continual access greatly increases the risk of a central line infection, which could be life-threatening in Joshua's fragile state.? I realize those negatives don't sound so bad & at first glance, the benefits of switching to IV medication outweighs the drawbacks.? However, Joshua's feelings throw a major wrench into this picture.? He HATES having his port accessed.? It is traumatic for him every single time we do it.? When he first got his port, we used EMLA to numb the skin so that accessing the port was painless.? After awhile, EMLA stopped working & after 2 very painful accesses, we switched to LMX numbing cream.? Unfortunately, his skin blistered with LMX and even more unfortunately, the day his skin blistered, we still had to access him, which was extremely painful for him.? After that, we were introduced to cold spray, which numbs the skin but stings as it is applied (it feels similar to getting a wart frozen off ~ that stinging, burning sensation that continues even after the spraying stops).? It was all we had left to use, though, so that's what we've used for years.? Joshua knows a port access will hurt even though he doesn't feel the needle go in.? The idea of having to do port accesses every week would cause him serious levels of anxiety.Then there's dressing changes, which are always painful.? Joshua has extremely sensitive skin that tears easily.? Thanks to my friend, Kate Estes (her son has mitochondrial disease ~ ), I have rolls of a special tape that won't wreck Joshua's skin, but the tegaderm patches that must be used for the dressing hurt when they are removed & they leave Joshua's skin very red and tender.? Unfortunately, if he has to be accessed at all times, the tegaderm & the port needle would be removed, then an antiseptic solution would be used to scrub the skin over the port before a new needle was placed.? Scrubbing the red, tender skin is super-painful.? Then a new tegaderm patch is put over the port and stuck to the tender skin.? The result is a sore chest for a couple of hours.? Best-case scenario would require a dressing change once a week, but if the dressing came loose (which can happen with things like excessive sweating, which Joshua experiences at times due to his autonomic dysfunction) or got wet, then dressing changes could be needed more frequently.? Each time Joshua has his port accessed or a dressing change, he cries & shakes.? It's traumatic for him.? I know some kids are champs at getting accessed/de-accessed, but this is one of Joshua's boogeymen.? As such, it's a HUGE drawback, in my mind, to switching him over to IV medication.? I have to consider his quality of life.? Would putting him on IV meds, thus requiring weekly port access/de-access & dressing changes, be worth the hit that Joshua's happiness & peace of mind would take?? Right now, today, I can't answer that question.? I just don't know.? It's looking like I'm going to have to get it figured out, though, since his body isn't doing such a great job of breaking down & absorbing nutrition or medications anymore.Then there is an added consideration that was tossed into the mix by a doctor, which is, assuming we wait until we have no choice but to switch Joshua to IV meds/fluids/nutrition, do we make that switch or do we interpret his increased vomiting and/or inability to effectively metabolize meds & food anymore as a sign that it's time to hospitalize Joshua and give him enough medication to make him pain-free, which would have the side effect of suppressing his breathing and would result in his death?? No, that isn't murder.? Right this second, doctors could legally give Joshua a very large dose of fentanyl that is equivalent to the dose of oxycodone he gets.? However, since his body isn't metabolizing oral medication perfectly, he's not actually using all of the oxycodone he receives.? We know this because he didn't need the full dose of fentanyl that he technically should have needed and the amount he received had to be divided into two equal doses given a couple hours apart in order to prevent him from having breathing problems.? If a doctor gave Joshua the amount they could legally give all at once, he would stop breathing, but in the effort to get him pain-free, I am pretty sure it could legally be done.? So I'm supposed to think about whether I want to switch him to IV meds soon or if I want to wait until there's no avoiding it, and whether I would want to take an inability to metabolize medication as a sign that it was time to stop fighting all together.Aren't these fun choices we're being asked to make?? And by "fun," I mean horrific, of course.Please know, I am not asking anyone to tell me what they think I should do.? I am just sharing what is weighing on my heart & mind tonight since I couldn't bring myself to type it all out last night, but I felt I needed to write this out because it is part of Joshua's story & I will want to remember this part along with all the others.I don't know what to do.? I'm listening to Joshua cough & tell me that his belly hurts.? This is happening more often than not now ~ his tummy hurting after he's eaten.? It's not like he ate a lot, either.? Maybe 2 ounces of a yogurt smoothie and 1 Chips Ahoy cookie.? *sigh*I need prayer for wisdom.? I need some guidance from the Lord to know what is the right choice, the best choice, for Joshua.? As long as he has quality of life, I want to enable him to enjoy his days.? But if giving him that time means taking away a portion of his quality of life (by forcing him to endure procedures he truly fears & that cause him pain), then what is a parent to do (that's a rhetorical question, as I know no one can answer it for me)?36 people this Sign My Guestbook | Read Tributes Written October 6, 2012 9:26pm by Kate Parker Joshua got discharged tonight from the hospital!? He is battling some head pain that's more intense than usual, but his nausea is better (he only has moments of feeling queasy and zofran is controlling that so he isn't throwing up, which is what is important) and he is SO happy to be going home.? The nurses, Megan & I are seeing lots of smiles, which is really wonderful for all of us, as those have been in short supply as of late.Bethany will be inpatient until at least Monday.? No one knows yet if she'll get discharged then or later in the week.? It depends on how the infection responds to the antibiotics, so we are praying for a quick recession of the redness in the area & for her to get out of the hospital as quickly as possible.Written October 6, 2012 3:53pm by Kate Parker Joshiebear woke up and is happy!? He announced that his head hurt and when I told him the nurse was coming to give him something, he smiled and said, "Thank you."? He then asked for some pudding and french fries, so we ordered him a tray and are now waiting for that to show up.? Joshua is sitting up, watching SpongeBob, and continues to tolerate his 2 ounces per hour tube feed without nausea.? In ten minutes, we'll bump him to 3 ounces per hour.? I'm happy that things are going in the right direction for him.Yesterday, when I was getting things ready to bring the kids to the doctor's office prior to their being admitted, I had to go to Adam's work because I needed to switch out the cars (he had the van & I needed it to transport Joshua) & let him know what was going on.? While I was talking to Adam, a woman was standing nearby & overheard our conversation.? As I turned to leave, she thrust a folded-up piece of paper at me.? I reached out to take it from her and as I did, she told me that she wrote poems & felt like she was supposed to give me this one and she hoped it might bring me some comfort.? I thanked her, told Adam, "Good bye" and left.The brief encounter with a kind stranger was obviously (in my mind) no coincidence.? God is pretty darn awesome to show His love in the midst of turmoil and it really did help me to be reminded that no matter what was happening, Joshua, Bethany & the rest of my family would remain securely in God's hand.? Nothing that happens does so by accident and nothing is a surprise to Him.? As such, even though I did feel stressed, I could stay calm because I knew that whatever was going to happen, I would not be experiencing it alone.? Knowing that? truth brought me great comfort (and continues to).? I praise God for that woman sharing her poem with me.This is what was written on the paper:IN HIS HAND by P.E. (just using initials to protect her privacy)When I gave my heart to Jesus,He placed me in the Father's hand,A hand so grand and mightyThere is no greater span.A hand with tender, healing touch,Yet with strength beyond compare.Pierced to take away my sinAnd all my burdens bear.Upholding and defending,As faithful as can be,Powerful, sustaining,Embracing all concerning me.No man can pluck me from it,For none is mightier than He.It matters not how weak I am,For it's His hand upholding me.48 people this Sign My Guestbook | Read Tributes Written October 6, 2012 2:53pm by Kate Parker I don't have a lot to update on Joshua.? He is still sleeping, so I can't say how he's feeling yet.? As a result of challenges in getting his meds on schedule and Joshua's overall demeanor being very subdued & withdrawn yesterday, I asked the doctor who came in today if we could try to switch back to Joshie's regular routine with oral meds and tube feeds/water to see if he's past the puking part of this virus.? Thankfully, the doctor agreed, so at noon, we started giving Joshua his regular meds and we are giving him a continuous feed of half formula, half water, at a rate of 2 ounces per hour.? If he tolerates it for a few hours, we'll bump him up an ounce per hour for the next few hours.? If he does well and doesn't throw up at all, then I'm going to make a case for getting him discharged.? He wants to be at home and he does a lot better recovering from illness in the comfort of his own environment, so I want to get him there as quickly as we can.15 people this Sign My Guestbook | Read Tributes Written October 6, 2012 1:43am by Kate Parker Joshua has stopped vomiting, but is still a little "urpy" and has to work hard to not throw up after getting meds via g-tube (some can't be switched to IV, so they're given super-slowly via his tube).? While his head still hurts, it's being managed on par with as good as we get at home (it hurts "medium bad").? He's getting? 500mcg of fentanyl every 2 hours, but could get up to 2000mcg, if needed.? We are being conservative in the amount we give him because his respiration rate drops to 4-5 breaths per minute when the fentanyl kicks in and no one wants to make him stop breathing.? They've got resuscitative equipment set up by his bed & ready to use.? When they started his IV fentanyl, the pharmacist stood in the room watching as the nurse injected 125mcg every 10 minutes.? When I asked what the deal was, the pharmacist (who obviously isn't around patients very often) replied, "The amount he's getting is kind of scary."? I nodded & said, "It's a lot," and he agreed, saying, "In any other person, they'd get this dose and be dead."? I saw the horrified expression on the nurse's face (she obviously could not believe the pharmacist had blurted that out) and began laughing.? It wasn't what was said, but rather, the way it was said & the fact that it was said that I found humorous.? Typically, doctors are so careful about the words that come out of their mouths in situations that are dicey, so it struck me as funny that this guy was so openly blunt.? I am pretty sure my response made him uncomfortable, but hey, that's what stress will do to me sometimes!It's 5 minutes to 1am right now, so I am going to bed.? Thanks so much for the prayers & caring thoughts and words for Joshua, Bethany & the rest of my family.? It is very much appreciated!25 people this Written October 6, 2012 3:53pm by Kate Parker Joshiebear woke up and is happy!? He announced that his head hurt and when I told him the nurse was coming to give him something, he smiled and said, "Thank you."? He then asked for some pudding and french fries, so we ordered him a tray and are now waiting for that to show up.? Joshua is sitting up, watching SpongeBob, and continues to tolerate his 2 ounces per hour tube feed without nausea.? In ten minutes, we'll bump him to 3 ounces per hour.? I'm happy that things are going in the right direction for him.Yesterday, when I was getting things ready to bring the kids to the doctor's office prior to their being admitted, I had to go to Adam's work because I needed to switch out the cars (he had the van & I needed it to transport Joshua) & let him know what was going on.? While I was talking to Adam, a woman was standing nearby & overheard our conversation.? As I turned to leave, she thrust a folded-up piece of paper at me.? I reached out to take it from her and as I did, she told me that she wrote poems & felt like she was supposed to give me this one and she hoped it might bring me some comfort.? I thanked her, told Adam, "Good bye" and left.The brief encounter with a kind stranger was obviously (in my mind) no coincidence.? God is pretty darn awesome to show His love in the midst of turmoil and it really did help me to be reminded that no matter what was happening, Joshua, Bethany & the rest of my family would remain securely in God's hand.? Nothing that happens does so by accident and nothing is a surprise to Him.? As such, even though I did feel stressed, I could stay calm because I knew that whatever was going to happen, I would not be experiencing it alone.? Knowing that? truth brought me great comfort (and continues to).? I praise God for that woman sharing her poem with me.This is what was written on the paper:IN HIS HAND by P.E. (just using initials to protect her privacy)When I gave my heart to Jesus,He placed me in the Father's hand,A hand so grand and mightyThere is no greater span.A hand with tender, healing touch,Yet with strength beyond compare.Pierced to take away my sinAnd all my burdens bear.Upholding and defending,As faithful as can be,Powerful, sustaining,Embracing all concerning me.No man can pluck me from it,For none is mightier than He.It matters not how weak I am,For it's His hand upholding me.48 people this Sign My Guestbook | Read Tributes Written October 6, 2012 2:53pm by Kate Parker I don't have a lot to update on Joshua.? He is still sleeping, so I can't say how he's feeling yet.? As a result of challenges in getting his meds on schedule and Joshua's overall demeanor being very subdued & withdrawn yesterday, I asked the doctor who came in today if we could try to switch back to Joshie's regular routine with oral meds and tube feeds/water to see if he's past the puking part of this virus.? Thankfully, the doctor agreed, so at noon, we started giving Joshua his regular meds and we are giving him a continuous feed of half formula, half water, at a rate of 2 ounces per hour.? If he tolerates it for a few hours, we'll bump him up an ounce per hour for the next few hours.? If he does well and doesn't throw up at all, then I'm going to make a case for getting him discharged.? He wants to be at home and he does a lot better recovering from illness in the comfort of his own environment, so I want to get him there as quickly as we can.15 people this Sign My Guestbook | Read Tributes Written October 6, 2012 1:43am by Kate Parker Joshua has stopped vomiting, but is still a little "urpy" and has to work hard to not throw up after getting meds via g-tube (some can't be switched to IV, so they're given super-slowly via his tube).? While his head still hurts, it's being managed on par with as good as we get at home (it hurts "medium bad").? He's getting? 500mcg of fentanyl every 2 hours, but could get up to 2000mcg, if needed.? We are being conservative in the amount we give him because his respiration rate drops to 4-5 breaths per minute when the fentanyl kicks in and no one wants to make him stop breathing.? They've got resuscitative equipment set up by his bed & ready to use.? When they started his IV fentanyl, the pharmacist stood in the room watching as the nurse injected 125mcg every 10 minutes.? When I asked what the deal was, the pharmacist (who obviously isn't around patients very often) replied, "The amount he's getting is kind of scary."? I nodded & said, "It's a lot," and he agreed, saying, "In any other person, they'd get this dose and be dead."? I saw the horrified expression on the nurse's face (she obviously could not believe the pharmacist had blurted that out) and began laughing.? It wasn't what was said, but rather, the way it was said & the fact that it was said that I found humorous.? Typically, doctors are so careful about the words that come out of their mouths in situations that are dicey, so it struck me as funny that this guy was so openly blunt.? I am pretty sure my response made him uncomfortable, but hey, that's what stress will do to me sometimes!It's 5 minutes to 1am right now, so I am going to bed.? Thanks so much for the prayers & caring thoughts and words for Joshua, Bethany & the rest of my family.? It is very much appreciated!25 people this Written October 3, 2012 12:06am by Kate Parker Today marked the first time since his last surgery that Joshua had a desat that he didn't quickly recover from on his own.? He was asleep & was hanging out at 86% oxygen, then began dropping lower and did not stop going down.? Megan was upstairs with him when this incident occurred & when she realized he wasn't breathing, she jostled her brother, which caused him to sharply inhale & begin breathing again.I can't really explain how it feels to know it's starting again (the desats he doesn't bounce out of right away).? Yes, we knew it would happen eventually. No, we're not shocked or surprised that it happened; after all, we know that someday, Joshua's brain stem will just stop working and that will be it.? He'll die. But it seems that knowing something is going to happen doesn't lessen the concern or intensity of emotion when it finally does occur.? This afternoon, I had to take Joshua to the infusion clinic at the hospital to get labs drawn & his port flushed with heparin (to prevent a clot from forming & blocking his central line).? There were a few surprises with his lab results & Dr. S said she wondered if he was beginning to not metabolize food/formula properly anymore.? I didn't know that was something that could/would happen, so it caught me off-guard to hear the subject brought up.? We didn't really get into the details of what not metabolizing food/formula would lead to for Joshua since he was right there & we don't discuss anything scary or worrisome in front of him. I'm sure that if it becomes an issue in the future, we'll discuss it in detail, privately.? She examined him carefully to try & determine what is causing the pain he has complained about on his sides and asked me if I thought maybe he'd broken some ribs.? I admitted that idea had not even occurred to me.? You'd think I wouldn't forget that my son's bones are severely demineralized & thus break easily, but hey, I did.? Too many other things to think about & remember between Joshua & Bethany, I guess!? The good news is that Joshua's liver & kidneys are doing *great*, which is amazing when you consider the amount of narcotics he's getting every day.? The bad news is that we still aren't certain why his ribs & belly are sore.? Overall, though, it's not something we're worrying too much about now that we know it's not likely to be anything serious.Interestingly, Dr. S checked Joshua's eyes and found his pupils to be widely dilated rather than pinpoint.? She marveled at that, telling me that if we had 1/100th the dose of medication Joshua had just gotten, our pupils would be tiny dots.? I asked what the significance of Joshua's pupils being dilated meant and she answered that he's not having any massive effect from the oxycodone.? So, in other words, the sleepiness and slurred speech that we were attributing to side effects of the narcotics are actually more likely to be caused by brain stem deterioration since the medication isn't affecting Joshua the way you would expect it to (because of his tolerance).? I suppose it doesn't really matter what is causing the symptoms, but I like knowing because I really don't want to end up feeling as though we drugged our child to death.? I'd like to know for certain that it was his brain stem that ultimately gave out, not that we legally overdosed him.? Again, perhaps that's splitting hairs, but it's emotionally significant for me.? When we got home, Joshua was completely wiped out.? We're going to turn in earlier than usual and I won't be at all surprised if he sleeps really late tomorrow.? I'm hoping to get a little extra sleep, myself.? Days like today, when both Joshua & Bethany have appointments and I have extra errands to take care of while we're out, which means Adam and I are getting them in & out of carseats repeatedly and in & out of wheelchairs repeatedly and moving the feeding pump & pulse ox for Joshua from the truck to his wheelchair & back again while they're hooked up to him and then putting the wheelchairs in the back of the pickup & getting them situated so they don't roll around (repeatedly), all while being stared at by curious people as they walk by, are exhausting. 31 people this Sign My Guestbook | Read Tributes Written October 2, 2012 12:02am by Kate Parker Something funny but also kind of sad: just before 4pm, I was getting Joshua's meds & I commented to Adam, "Geez, I can't believe it's 4 and he's still asleep!" Adam very seriously responded, "Well, Mom, REMEMBER, he did play with bubbles yesterday."Yeah. Playing with bubbles outside for 20 minutes results in sleeping until 5pm the following day. The sort of funny part was that Adam was just so matter-of-fact as he reminded me of this activity Joshua had engaged in, as though it had been a marathon or something that would obviously exhaust a person. Such is the reality of Joshua's endurance level, or lack thereof.? Truthfully, we don't really think about it most of the time simply because we are accustomed to activity wearing Joshua out, but occasionally, something glaring will grab the attention of someone in the family and lead to commentary, and the bubbles causing complete exhaustion was one of those things that kind of blew my mind today.? Seriously, being upright & popping bubbles as they were spewed out of a machine wiped my little guy out.? What 6.5 year old boy gets exhausted by popping bubbles?? Sometimes I can almost forget what is going on inside Joshua's body & I can even imagine him shocking his doctors by living for years, but then I get the equivalent of cold water tossed in my face with reminders that truly, his little body is wearing out.? And yeah, it's not like it's a surprise.? It's not like I don't know the truth.? And 90% of the time, I accept it, too.? But there's still that 10% that wants to think maybe the doctors are wrong.? Maybe that last surgery Dr. W did was the one Joshie needed to be okay.? Yeah, I know, I saw the MRIs we did a few months ago.? I saw the intraoperative pictures from his last brain surgery.? I know what's happening in there.? Sometimes it's just nice to break off from reality & allow myself to pretend that things could end up being okay.? Popping bubbles.? Who knew that required gargantuan amounts of energy?? Oh well.? I think instead of being sad, I will smile & be thankful that Joshua can still pop bubbles... that he wakes up & grins as he announces he needs to be changed... that he asks for red Mt. Dew but will drink Cherry Coke because he can't tell the difference anymore (narcotics deaden taste buds, so as long as it's fizzy, he's happy)... that he chatters while playing a game on the computer and when I ask, "What, Joshie?"? he answers, "Nut-teen. I tot-teen to my-telp." (Nothing. I'm talking to myself)... that he has a new love for cinnamon graham crackers spread with chocolate frosting and "Onwee Maydun do it wight," (Only Megan does it right), which means I get to laugh as I listen to him beg his big sister to, "Pweez dit me a gwam pwat-oh wit wots & wots & wots o' pwa-teen!"? (Please get me a graham cracker with lots & lots & lots of frosting) periodically throughout the evening.? He's a character, my little boy, and while his body may not have the energy to put into activities anymore, his personality is still going strong. I recognize that for the gift it is.? With the amount of medication Joshua takes each day, he could easily be so dopey that he barely talks or he could be sleeping around the clock, waking for only brief periods of time, or he could be having major amounts of apnea and thus far, he isn't.? I know he very well could get to that point (it's predicted he eventually will), but he's not there today, so I am going to try to continue thanking God for the good times we get to have with Joshua almost every day and try to not let the losses that are appearing on an almost-daily basis get me down (for very long).? 36 people this Sign My Guestbook | Read Tributes Written September 29, 2012 12:23am by Kate Parker Good news ~ Joshua is feeling MUCH better!? He still has a gunky cough, but he's not sick like he was and that is a huge relief.Bad news ~ He can't walk up or down the stairs anymore.? I think I'd mentioned that he could not walk down, but he was still able to crawl up.? Now he can't do either.? One of the adults has to carry him in a cradle position (one of our arms wrapped around his back & under his arm and our other arm tucked under his knees with his body sideways in front of us) up or down the stairs.He can't climb up on his bed & he struggles to get off of it.? No, the bed isn't high off the ground.? He just can't do it anymore.? I'm not sure why, exactly, but I suspect it has something to do with his very-tethered spinal cord making it difficult to lift his leg up.His head pain can only be brought down to what he classifies as "medium hurting".? The days of pain-free are long gone and the days of his head hurting "an insy bit" have also disappeared.? Now the goal is to keep it at the medium level.? How Joshua functions with that level of pain in addition to the amount of narcotics he gets each day is truly beyond my ability to comprehend.If doctors are correct, he isn't expected to be here in 13 weeks.? Some days, I think the doctors must be wrong because he seems to be doing okay & I can't imagine him dying any time soon.? Other days, I don't think Joshua will make it even 13 more weeks.? I'm not stuck on a specific calendar date because I know that the day Joshua dies will be when God ordained it to be, not when a doctor thinks it will happen (and there's no way for me to know when that will actually be), but it is sobering to think there is even a possibility that I might have only weeks left with my little boy.? It makes me want to hold him every moment of every day.? It makes me wish I could memorize every single detail of his face and bottle his scent and find some way to never forget what it feels like to hold his hand & tickle his belly & how his skin feels under my lips when I kiss his cheek & how his little arm feels as he wraps it around my neck to pull me close for a hug every night as I lean over him to say goodnight.? I am ready for Joshua to not hurt anymore, but I am not ready for him to die.? I know that sounds like a major contradiction & perhaps it technically is, but my heart knows what I mean.? I am sitting here watching him play a game at the computer & listening to him chatter to himself and I just cannot imagine that seat being empty & the room being silent.? I tear up just thinking about it.How will I live without my Joshiebear?? I am so scared of having to face that future.? Just the THOUGHT of it is so painful... how will I ever get through the actual reality of living each day without him?37 people this Written September 27, 2012 12:35am by Kate Parker I am writing this with some trepidation.? I don't want to offend people, but I can't shake the feeling that this is a post I am supposed to write.? Hopefully, prayerfully, I will be able to express my heart in a way that others "get" what it is I am trying to say and won't misunderstand. I have read many blogs and caringbridge pages of mothers who have lost a child. The cause of the children's deaths have been varied - cancer, mitochondrial disease, accidents or other diseases/conditions - but one thing that each journal has in common is a post, typically written about 2 to 5 months after the child has died, expressing anger and frustration and raw pain over the insensitive, albeit well-intentioned, things people have been saying to them.? It stunned me to realize how universal this is -- people not knowing what to say to a grieving mother or wanting to say something to fix her sadness, so they say all the wrong things.? To be honest, it really scared me.? I know that probably sounds strange, so let me try to explain.Imagine that you are going to be forced to join a club that you have absolutely no desire to be a part of.? It is a club made up of members who hurt every single day with an open wound created when their child died.?? Imagine knowing that even though time will go by, the pain you feel will never go away and the wound will never really heal because you can never "get over" the loss of your child, even though you can (and will) learn to function again.? THEN imagine that while your wound is fresh and raw,? friends and strangers will come up and poke it, thinking that they are being helpful.? Over and over, they will hurt you and you will be expected to thank them for caring or to respond graciously or to smile and understand that they mean well even though your wound is now throbbing, thanks to their unintentional insensitivity.? Does that sound like something you would look forward to experiencing? No way!? I know it is coming, though, and there is nothing I can do to escape having to join the club no one wants to be a member of.? But MAYBE there is something I can do to preempt some of the pain that comes from insensitive (no matter how well-intentioned) comments.? I am writing about this topic before Joshua dies with the hope that what I say won’t be disregarded as a grieving mother’s ranting.? I don’t want anyone thinking I am speaking about them specifically (I promise, I’m not).? I am hoping that writing this journal entry will help not only me (by making people more aware of what they say to me after Joshua dies), but also other grieving parents.? Maybe writing this will open people’s eyes and then they will pass on what they’ve learned to other people, who will then respond more appropriately to the next grieving mother or father they meet. Education has to start somewhere, right?I understand that most people don't know what to say to a parent whose child has died. I had no idea for a long time, either, and I’ve said insensitive things & tossed out my share of well-meaning platitudes, as well.? I read on another grieving woman’s blog (she’d lost her husband) something that really resonated with me as truth: “I have to remind myself that they are not trying to hurt me. They are not trying to make my life miserable or minimize my feelings. It’s quite the opposite, I think. They are trying to help! Really! Unless a person was mean and nasty and callous before your loss, in which case nothing they have to say should matter, anyway, a friend or family member or coworker doesn’t suddenly become mean and nasty and callous overnight. There’s some selfishness, of course, a sort of “I don’t want to see you in pain so stop it already, you’re making me feel bad.” There’s clumsiness and awkwardness. Many of them are dealing with their own pain over your recent loss. There are no words to help a grieving person magically feel better, but we are wired as social creatures to find words for all situations.”? I think that is the crux of the matter. People want to fix a situation, especially one where pain is involved, so they try to find words that will help.? What I’ve learned is, you can't fix it.? There is nothing you can say that will make it all better, nothing you can do that will make things go back to the way they were, so don't try. As such, any comment beginning with the words "at least" is the WRONG thing to say.At least he isn't hurting anymore. At least you have other children.At least you have some wonderful memories.At least you had him for X many years… longer than anyone expected.At least he’ll never have to go through anything bad on earth again.At least he died peacefully. At least you got your chance to say goodbye.Don't say things like that.? It is okay to say you are glad a child is no longer in pain, but temper it with an addendum like "but I wish he didn't have to die for that to happen." And as for the whole "be glad you have other kids," type of comment, what the heck?!?!? Like other kids are a backup for the child who died?? Like having other children somehow eases the pain of losing one?? No.? Just...no.? Don't say it.? To any parent.? It is an awful thing to say.? Do you realize that having other children means not only does a parent have to manage their own grief, they have to help their other child/ren learn how to manage theirs!? That doesn't make the pain less... it adds another dimension of pain as the parents watch their other kids hurt and are helpless to fix it.? I understand the comment is made because people think that when a parent who loses a child has other kids, they still have something to live for and it is believed that will help pull them out of their grief.? The truth is, it doesn't.? It just means there are more people hurting from the death of the child/brother/sister.Another horrible, no-good, don't EVER say it to any parent comment is, "S/he is in a better place." I know what you are thinking -- as a Christ-believing person, surely I agree that heaven is a better place for everyone!? It is perfect and there is no suffering and no evil and ohmygosh, why would it NOT bring a mother or father comfort to be reminded that her precious child is in Paradise?? The simple answer is this:? while it is true that heaven is a better place than earth, no one wants to live without their child.? It could be argued that Hawaii is a better PLACE to live than Oregon, but I wouldn't want to send my kids to go live there without me.? Heaven is a place, a location, and as parents, we don't happily send our kids to locations without us on a permanent basis, so while heaven may technically be a better place, would you be happy to send your child there today and live the rest of your life without ever seeing them again?? If not, ask yourself why... after all, it is a better place, right?? Another aspect of the "he's in a better place" comment that is upsetting is that it leaves parents asking, "What was wrong with him being here with us?" Telling someone that their kid is in a better place implies that where they were living prior to death was not good enough.? Who among us, as parents, wants to be told that we weren't good enough for our child?? Again, I realize the comment is not said with that intention, but I am telling you that that is exactly how it is received by a grieving parent.? So just don’t say it if you are trying to be comforting (or don’t want your head ripped off).Other comments to avoid:“I know how you feel.” ?Unless you have also lost a child, then no, you don’t.? You know how you think you'd feel and that is not the same. Grief is the most personal and individual experience any of us go through. It is different for every person because we all have a unique relationship with the person who died; therefore, no one else can ever know how you feel about losing that person. “When my mom/dad/grandparent/dog died…”? Don't try to compare the loss of a parent, grandparent or, worst of all, a pet, with the loss of someone's child.? It isn't the same and there is no comparison. ?Especially in the immediate aftermath of a child’s death, don’t go on about your experience when talking to the newly-grieving parents. Yes, you understand what they are going through, but they don't want to hear about your child right now. Not that your child isn't important or your experience would not be valuable for them to hear, but when their child has just died, what they want is comfort for THEIR loss, not to comfort you in yours.“Everything happens for a reason.”? This is true, but there is a time for everything, as well, and just because something is true does not mean it is comforting.? The Bible says to weep with those who weep (Romans 12:15), not toss out platitudes or pithy sayings. “S/he is an angel now!”? “God needed another angel.” “Now you have your own angel to watch over you!”“S/he will be your guardian angel now.”I realize this one may be really sensitive for a lot of people because many people refer to their children who have died as angels, but from what I have read, the vast majority of parents who have lost children do not feel comforted by having someone tell them any of the above-listed statements.? Parents don’t want guardian angels; they want their flesh-and-blood child in their arms.? Also, some parents don’t believe that children get transformed into angels when they die and therefore any comment alluding to their child being an angel after death is upsetting on multiple levels. Unless you know for certain how a parent feels about this sensitive subject, it’s best to avoid "angel" comments altogether. Personally, my family does not believe that human beings become angels in heaven.? The Bible is clear on this subject.? God created the angels & heavenly Host and He created humans.? We are different creatures and Joshua has as much chance of becoming an angel when he dies as Molly, our cat, has of becoming a dog.? When we humans die, we get glorified bodies ~ perfect, unmarred, healthy-in-every-way bodies ~ but we don’t become angels.? I will request right now that you please refrain from telling me that Joshua “earned his wings” when he dies or that he’s now an angel (guardian or otherwise).? I know how comments like that make me feel now and Joshua hasn’t died yet.? I don’t know if I will respond graciously at all if someone tells me that he earned his wings or is now an angel after he has gone to be with Jesus.A few other comments to NOT say to grieving parents include the following:“It's time to move on.” Or “You need to get over this.”? How can you ever get over something that fundamentally changes who you are and the path of your life?? It’s not for others to determine how much time a person is allotted to grieve.? Don’t distance yourself from them in the meantime.? Try to not judge them if you think they’re being sad for too long.? It is only by God’s grace that you are not walking the same road and even if you were, everyone should be allowed to process their pain & loss at their own pace.“Your other kids need you.”? A grieving parent is aware of that.? This comment isn’t going to encourage them to “feel better” and function better.? It’s going to dump guilt on top of their pain.? Don’t do that to someone who is already hurting. They don’t need or deserve it.“Are you over it now?” or “Are you okay now?”? The death of a child is not something a parent “gets over,” so do not ever ask if they are over it. ?They will never be “okay” in the same way they were before their child died, so don’t expect them to be.? Extend grace and understand that losing their child changed them and they will eventually find their new normal, but it won’t necessarily look the same as it did before their child died.? Be a friend who is okay with that.? Accept them the way they are now and don’t compare them to the way they used to be.“He wouldn't want you to be sad.” or “He would want you to be happy.”? Two more statements that are, at their core, incredibly selfish.? The speaker of such a comment is uncomfortable by the parent’s sadness; as such, the speaker wants the parent to stop being sad, so they try to make the parent cheer up (as though they are deliberately choosing to be unhappy).? It doesn’t work.? It DOES upset the parent to hear such a comment, though. ?Saying these kinds of comments can have the same EMOTIONAL effect on a grieving parent as if you had coldly told them to "snap out of it" or "get over it already".? In an emotionally-charged situation such as the death of a child, even words that seem harmless to you might really hurt the parents. So how do you avoid that pitfall? Honestly, I think that if you speak from your heart, a parent will generally recognize the sincerity you are trying to convey and then, even if the words aren't perfect, they’ll understand what your intention was and that makes it easier to overlook any "imperfection" in the comment. Please do not avoid mentioning the death of a child out of fear of saying the wrong thing.? I understand you don’t want to hurt the parents, but it won’t hurt them to hear their child’s name on your lips.? It WILL hurt them to have a friend ignore their loss as though it never happened, though.Possibly the biggest well-intentioned-but-totally-not-helpful comment is “Call me if you need anything!"? I realize that this one is said with the utmost sincerity, but I want everyone to take a minute to really THINK about the situation where this comment is made so they will understand why it is not a helpful thing to say to a grieving parent.? Okay, picture this: your child has died.? There are people to call, funeral plans to make, a funeral to get through, other children to take care of, and life will continue on (even though it feels like it has stopped for the grieving family) ~ meaning, bills still need to be paid, groceries still need to be bought, kids still need to be fed multiple times each day, laundry still needs to be done, etc.? It is hugely overwhelming to a family that has just suffered the death of a loved one.? Then people start saying, “Call me if you need anything!”? Really?? What are you offering?? Do you really mean ANYTHING or are there limits to what you can actually do to help?? By and large, grieving parents don’t take people up on their vague offer.? When you feel overwhelmed, the idea of calling someone for help can be exhausting, especially when you don’t know if the person actually meant what they said or if you’re afraid of putting someone “on the spot” by calling them with a specific request that they may not want or be able to fulfill.? Not knowing the boundaries of what is offered can lead to people feeling awkward, which is something human beings tend to try to avoid.? As such, making the “call if you need anything,” offer isn’t really very helpful.Instead of tossing out a general offer for help and relying on the grieving parents to call you, make concrete, specific offers and be willing to reach out rather than waiting for a phone call. Some examples:“Can I come over on Thursday to help with laundry?”“We’d like to buy your family dinner on Tuesday.? Would you like Chinese food, pizza or Subway sandwiches?”“I will call tomorrow to check in on you.? If you don’t feel like talking, let your machine take my message.? It’s okay if you don’t want to talk.”“Would you like me to take your kids to the park/out for ice cream/to a movie?? I could take them out on Monday after school.”“Can I come by on Wednesday afternoon around 2?? If you have anything that needs to be done around the house, like dishes or laundry or vacuuming, I’d like to help.”“I am going grocery shopping on Saturday.? If you give me a list, I will shop for your family, too.”Offer what service you are willing to do and then take the initiative to follow up with your friend.? THAT is helpful and it takes the burden of remembering which friend is willing to do what out of the grief-stricken person’s hands. Proverbs 25:20 says “Like one who takes away a garment on a cold day, or like vinegar poured on a wound, is one who sings songs to a heavy heart.”? Words that minimize a person’s pain are hurtful, especially to the heart of a grieving parent.? Instead, come alongside a grieving parent (literally or figuratively)… offer a hug, a shoulder to cry on, and your time. Be willing to hurt with them, to be silent if needed, to fight against the urge to throw out words just to fill the void, to cry with them or to be okay with hearing them cry. ?Let the parent be silent if they need to. Let the parent talk if they want to.? Listen and respond in a way that validates their feelings.? Find tangible ways to help them in the months that follow the death of their child. ?Share your memories of their child. Talk about their child ~ as Elizabeth Edwards said, “If you know someone who has lost a child or lost anybody who's important to them, and you're afraid to mention them because you think you might make them sad by reminding them that they died, they didn't forget they died. You're not reminding them. What you're reminding them of is that you remember that they lived, and that's a great, great gift.”? The best thing you can do is recognize the loss (“I’m sorry,” “My heart is broken with yours,” “I will miss __(name of child)___ so much!”).? If you don’t know what to say, be honest and say that!? It’s okay to tell a grieving parent something along the lines of, “I don’t know what to say, but I want you to know I care and I hurt with you.” Speaking honestly from your heart in a way that affirms the loss and recognizes the family’s pain is a good approach since it is unlikely that you use platitudes as a regular part of your daily speech, so you’re less likely to resort to such comments that will come across as insensitive.? In conclusion, I want to reiterate that I fully recognize that most people do not intend to hurt a grieving parent with their comments.? I know that it’s important for the grieving parent to not be oversensitive to things said to them and to not hold a grudge against people just because they didn’t say the perfect thing. ?I know that the most important thing is recognizing that when people reach out after a death, they are doing so because they care.? And at the end of the day, I would rather have someone say something "stupid" to me than not say anything at all.After all of the research I did on this topic in preparation of writing this today, I came here to Joshua’s CB page & read the guestbook comments and was filled with gratitude that God has surrounded me with so many people who inherently seem to know the right things to say when I share the ache in my heart.? As such, this journal entry may seem pointless to a lot of you who think, “Well, duh!? This goes without saying!”? Unfortunately, though it should be common knowledge (after all, millions of children die every year & leave grieving parents behind), it isn’t.? If you google “stupid things people say after the death of a child,” you’ll see what I mean.? I believe it is valuable to help people realize how their words can impact a family that has suffered a loss AND to help educate people about appropriate “etiquette” in the aftermath of a death.? Maybe it will result in fewer parents being unintentionally hurt by the people who care about them and in grieving families getting more of the support that they need in ways that are truly helpful, which would be a win-win situation all around. 53 people this Sign My Guestbook | Read Tributes Written September 26, 2012 1:03am by Kate Parker I only have a minute for a quick update, but would really appreciate prayers for Joshua.? He has gotten sick with the same bug his brothers & sisters have had over the past week.? For the other kids, it's been a couple of days with a sore throat followed by about 24 hours of vomiting, another 24 hours of feeling nauseated but not throwing up, then 24 hours of not feeling nauseated, but also not really wanting to eat.? Then they bounce back and are okay except for a super-stuffy nose & phlegmy (is that even a word? LOL) cough.? Isaac was the first kid to go down with this 9 days ago and he is still coughing/sniffly, so this bug hangs on for awhile even though the *bad* part of it is only about 48-72 hours.Anyway, Joshua got hit hard yesterday.? We've upped his anti-nausea medication in an effort to prevent vomiting.? If he throws up, he'll get admitted to the hospital because we can't afford to not have a way to get water, nutrition & medication into him, so he'd have to be switched to IV stuff for a few days.? Thus far, the increase in medication is working.? He's been nauseated, but nothing has come up (thank you, Lord). In my house, we're praying that Joshua will get over this illness swiftly & without any sign of further decline as a result of having been sick.? If you want to pray something similar, my family would appreciate that a lot.44 people this Sign My Guestbook | Read Tributes Written September 23, 2012 11:43pm by Kate Parker Yesterday, I had to take Bethany to see our pediatrician because the incision where her port-a-cath was put in almost 4 weeks ago had split apart again despite having been stitched closed a week earlier when it had split apart the first time (due to her poor wound healing).? After we finished taking care of Bethany, Dr. S asked how Joshua was doing.? This is a typical exchange any time I have Bethany in to see the ped just because she doesn't see Joshua nearly as often but likes to keep tabs on what's going on with him; yesterday, however, Dr. S had time to sit down and really talk to me (the benefit of seeing her when she's on-call for the weekend), so we took advantage of that.We discussed Joshua's latest symptoms showing decline, which led to questions about the amount of apnea & bradycardia he has each day.? I reported that the only time I have him hooked up to the pulse ox is at night and for the first hour after going to sleep, he desats frequently, with accompanying bradycardia (slow heart rate), but he typically does pretty well the rest of the night, with only sporadic triggering of the alarm.? Remember that I keep the parameters set pretty low at night (80% for oxygen and 40 for heart rate), so he has to have a fairly significant episode of apnea or bradycardia to get my attention.? I also told her that I sometimes do "spot checks" during the day when he turns very gray and during those episodes, his oxygen level is very low & his heart rate will be in the 30's.? She nodded, not surprised by my words.? What both Dr. S and I find amazing is that Joshua is obviously declining, yet he's not having huge amounts of significant apnea & bradycardia yet.? She expects that to change, but it's kind of incredible that it hasn't yet. We agreed that Dr. W did an impressive job of getting his brain moved away from his brain stem last November, and the VP shunt is obviously helping since it drains off some of the excess cerebrospinal fluid that would otherwise accumulate & increase pressure inside Joshua's head.? The shunt has definitely slowed down the decline, but nothing will slow the deterioration of his brain stem and that is why the apnea & bradycardia will get worse as time goes on.We moved on to discussing Joshua's increasing "urpiness" ~ he gets close to throwing up but keeps it down ~ and how we'll manage that if he stops being able to tolerate food & fluids through his g-tube, which would be to switch everything to IV through his central line. Since there is no IV oxycodone, we'd switch Joshua to fentanyl & enlist Dr. T's (palliative care doc) help in determining the dosage conversion.? I said I really hoped to avoid having to go this route and Dr. S immediately understood ~ fentanyl dramatically increases Joshua's sleepiness, and at the dose he would need, he would probably be pretty much snowed and sleeping all the time. Our conversation then segued into territory we've not explored before, but Dr. S had seemingly been waiting for the opportunity to bring up, which she did in a very gentle & kind manner."Kate, if it happens that we have to medicate Joshua to the point he is sleeping all the time & not waking up, we will have to make some decisions."? "Oh.? Okay," I tried to figure out where Dr. S was going with this train of thought, then asked, "Yeah... what do we do if he needs so much pain medication that he doesn't wake up, but he's not having apnea to the point he stops breathing on his own?? That would be awful... watching him sleep around the clock and having him not wake up anymore."Dr. S agreed with me, then very quietly explained that if this scenario does occur, where Joshua is sleeping around the clock without waking as a result of his need for pain medication at a dosage that snows him, what will happen is that we would slowly reduce the amount of narcotic he's getting to bring him to a level where he is conscious again and then we would evaluate how he does.? If he can manage with the lower dose of pain meds, then we'd keep him at the lower dose and enjoy the time that he's awake and interactive.? If he was in horrible pain and absolutely needed the higher dosing of medication, we would give it to him, knowing the result would be that he would not wake up again.? She said that there is a very, very, very fine line that needs to be walked when medicating a child at the end of life, balancing between controlling pain & watching how it affects their respiratory function, but if we've tested Joshua and confirmed that he could not be okay on a lower dose of narcotic that would allow him to also stay awake, we can give him a larger dose of narcotic to ensure he is kept pain-free as we wait for his respiratory function to cease.? I know some people may read that and gasp and think we are advocating euthanizing Joshua, but that is absolutely not true. It's simply the cold, hard fact of dealing with end-stage terminal illness and it is incredibly horrible to have to talk about with regards to your 6 year old child.? Above all else, we want to keep Joshua comfortable, even if that means that to do so will cause him to stop breathing.? If the alternative is to give less medication which would result in him being in horrible pain but allow him to continue breathing, well.... that's not really a great alternative and why would we do that to him?? It's not like he would be able to enjoy life in that condition and at that point, we'd just be delaying the inevitable.Dr. S told me she is hoping that the above-described scenario does not happen.? She launched into a story about a friend whose dog was very old and I interrupted to ask, "Are you going to compare the loss of a child with the death of a dog?? Really?"? She quickly assured me that no, she was not... she said she would never compare the two because there is absolutely no comparison!? "But," she said, "I want to share this story with you."? So I leaned against the exam table while I listened to her tell me about how her friend's dog was very old & they (friend & her spouse) were sure he would die soon, but he didn't, and then he finally got very sick & they reluctantly made plans one Saturday to put the dog to sleep on Monday.? That Sunday, the dog woke up, had a good breakfast, walked out to the garden, laid down & died.? Dr. S finished telling me the story, then sighed heavily and told me that what she wanted so badly for Joshua was for him to have a really good day with the family before going to sleep for the night & simply passing away peacefully without ever waking or having any struggle whatsoever.? She wants him to "have a good breakfast & go out to the garden."? I solemnly agreed with her, saying that all Charley, Megan, Adam, Emily & I wanted was for Joshua to die peacefully, as well (the younger kids haven't really talked in specifics about Joshua's death & we respect that and don't try to give any more information than they need or want). We know it won't be easy for us, but we desperately want it to be easy for Joshua.? No struggle.? No pain.? No fear for him at all.? That is our prayer.? Well, that & that God will allow both parents and the 3 oldest kids to be present when Joshua breathes his last.? We realize it will happen as God has ordained, but the Bible says to make our requests known to God (Philippians 4:6), so that is what we are doing.? I shared this with Dr. S and she nodded in agreement, then reached out to rub my arm in a comforting manner for a moment before hugging me.? She suggested that we not make any specific plans, but rather, just let things happen as they're going to happen & we can make decisions as the need for them arises.? I agreed that was a good strategy and said that now that I knew the basic plan if this particular scenario occurs (the need for IV meds that knock Joshua out), I don't need to think about it anymore (and yep, I will do my best to not dwell on it unless the situation comes up where I have to face it).? The last thing we spoke of pertained to milestones.? Dr. S said, "Sixteen months ago, we sat down together and one of the things I recommended was looking at milestones that we could aim for ~ things like birthdays and Thanksgiving and Christmas.? He's reached a lot more milestones than we thought possible back then, hasn't he?"? I smiled and agreed that yeah, he really has.? Dr. S went on, saying how this past year has truly been a gift since Dr. W had thought Joshua would die during the surgery that she did last winter.? I nodded my agreement with that statement, knowing it was true & that if it weren't for God blessing Dr. W with the skill that she displayed last November, there is no way Joshua would still be here.? Then Dr. S took a deep breath and paused for a moment before slowly and carefully saying, "Kate, I think that from now on, we should not look at milestones anymore.? I think we should focus on the milestones Joshua has met this year and not on the milestones that we would like to see him meet.? Let's not focus on whether he makes it to Thanksgiving or Christmas.? I don't want you and Charley and the rest of the family to be brokenhearted if he doesn't make it to a milestone.? I've seen it happen with other families, where the parents cry, 'He didn't make it to Christmas!' and I don't want that to happen here.? So let's all focus on all the milestones Joshua HAS reached this year instead of future milestones.? How does that sound?"How did it sound?? Awful, actually.? It felt gut-wrenching because it sounded like our trusted pediatrician was telling me that she does not believe Joshua will live much longer.? But because I don't disagree with her, I answered her question with a quiet, "Yeah, that's a good idea."? Truthfully, I know it won't matter whether I focus on future milestones or not.? Regardless of when Joshua dies, I will always think, "I wish he had been here," whenever a birthday or holiday comes around.? But I can appreciate the wisdom of not getting attached to a particular milestone or date in my mind because my devastation would be increased by the psychological blow of realizing he did not make it to that special day. Dr. S & I hugged again and she told me she was really glad we had both had time to sit down and talk the way we had done that afternoon.? She said that as time goes on, she thinks we should have these kinds of talks more often and that if I ever need to talk about things like this with her, I can call her cell.? I won't take advantage of having her number (I've had it for over a year and have called her only twice ~ once to return a call she'd made to me and the second time when we thought Joshua was dying), but her offer touched my heart and I appreciated it.*sigh*In other, related news, Adam talked to Joshua and told his youngest brother, his best friend, that it was okay if he (J) needed to go to heaven before Faith & his wedding.? Adam told me about their conversation this past Friday, saying that he doesn't think Joshua will be able to hold on until March.? HUGE admission for my oldest son, and hearing that he has accepted that Joshua is not doing well was physically painful for me because I know how fervently Adam has been praying for God to make a way for Faith to get here sooner so that Joshua could be the best man at their wedding (Faith cries on Skype when she talks about how sad she is that she may never get to hug Joshua in person) and I know how difficult it has been for Adam to admit that God's will for Joshua may not be to heal him on earth. I don't know how to end this journal entry, so I'll simply take a minute to tell you all how sincerely grateful I am for the prayer support and words of encouragement and love that you share with me in the guestbook.? Your comments have buoyed me and helped keep me afloat on days when my strongest inclination is to lock myself in a room & cry until I drown.? Thank you for that.? Truly, I don't think I will ever be able to express how much I appreciate knowing that so many of you care.55 people this Written September 23, 2012 1:27pm by Kate Parker No beach trip today.? Joshua woke & said he doesn't feel good enough to go.? Since this is something he really wanted to do, having him say that he doesn't want to do it today because he doesn't feel well is something we're taking seriously & trusting him on.? He will know when he's "up" for the trip & it's my plan to take him whenever the day arrives that he can manage it.? It doesn't make my heart hurt any less knowing he isn't feeling well enough to do it today, but I'm not giving up hope that he'll be able to get to the beach one more time.He needs help getting up & down the stairs now.? He can crawl up the stairs with minimal boosting, but he needs to be carried down.His understanding of some words is being lost.? For example, the word "behind" no longer makes sense to him.? If he asks where a toy is and we tell him it's behind him, he stares at us.? If we say, "Joshie, look behind you," he looks down at the ground in front and to the side, but does not turn around.? We have to physically turn his body to show him where the toy is at.? I asked him to stand behind Bethany (he was standing beside her) and he did not understand what I wanted.? We're seeing this happen with more words.His voice is a lot more hoarse than it's been.? Historically, hoarseness has been related to his chiari & has been a sign that it's time to do more surgery.? That isn't an option anymore, though, so the hoarseness is noted & we try to just go on.Dr. S (ped) and I had a long talk about Joshua yesterday.? I'll write about it later today when I have more uninterrupted time.? It was one of those emotionally-draining, hard-to-hear-but-necessary-so-it-was-good-we-had-the-talk kind of conversation.? The kind that leaves me feeling exhausted, but thankful that Joshua's doctor cares so much about my little boy.? 34 people this Sign My Guestbook | Read Tributes Written September 20, 2012 4:53pm by Kate Parker Got Joshua's updated POLST (Physician's Orders for Life-Sustaining Treatment) form in the mail last week.? There's something about seeing "Do Not Resuscitate/Allow Natural Death" and "Comfort Measures Only" written out that is sobering.? Seeing it in black & white made my heart sad.? I know it doesn't change anything.? I realize that it's just a piece of paper.? I can't explain why it upset me.? It just did.Another thing that made me sad today was realizing that Joshua's ability to count is now limited to #1 through 5, with a need for prompting at #4.? Watching a child lose cognitive function is awful.He is always tired now.? Always.? He 'cuggles' with me at random times throughout the day, telling me he's tired and needs to rest.? He fights against taking naps & actually going to sleep, though, and tries to push himself through his fatigue (with mixed results). He needs multiple doses of extra medication for breakthrough pain every day.? His activity is limited.? He has told Charley & me that he would like to go to the beach "one more time".? We are going to take him this weekend (it's a 90 minute drive).? Please pray for a good day for him so he can enjoy the ocean and the sand one more time.......... just the thought of it being the last time we get to do this with Joshua hurts my heart.41 people this Sign My Guestbook | Read Tributes Written September 16, 2012 8:09pm by Kate Parker Last night, Adam carried Joshua upstairs to bed & helped me get him situated with his fluids hooked up, night diaper on, teeth brushed, stuffed animals arranged just so, "heavy breather" turned on (the nickname for his oxygen concentrator) & tucked in with his blankets.? I listened to the brothers go through their nightly "goodnight routine," then Adam told Joshua, "Thanks for sticking around for my birthday.? Are you going to stick around for my wedding?"? Joshua answered, "Yes."? Adam asked, "You're going to be my best man?"? The answer? "Yes, 'cuz I is going to carry the rings. That is the most important job!" I laughed & agreed with him that yes, definitely, the person who holds the rings is the most important person in a wedding.? Adam grinned, agreed, and then, satisfied that all was well, gave his baby brother another hug & kiss, told me 'good night,' and left the room.Joshie curled up against me so I could wrap my arm around him. I kissed his cheek, then told him, "It's okay if you can't stay for Adam's wedding, Baby."? He nodded & said confidently, "I know."? I added, "If Jesus tells you it's time for us to go to heaven, then it's okay." Joshua replied thoughtfully, "I think I will be going before you."? "Really?"? I was surprised by that.? Not because I actually believed I'd die when Joshua does, but because he has been holding on to the belief that our entire family would go to heaven at the same time.? I asked him, "You're going to go to heaven before me?"? He matter-of-factly affirmed, "Yes. I will go first. Then I will send you butterflies." I hugged him closer & told him I will really like that.? Then I thought I should reassure him, so I said, "You know I'll be coming to heaven, too, right?? Like when I take Bethany to the hospital & I'm gone for a day, but then I come back and we see each other again... it'll be like that.? You won't see me for a little bit, but then I'll come to heaven, too, and I will see you again."? Joshua answered, "Yes, I know.? I'll be there and I will wait for you."? I said, "But I won't be able to call you like I do now when I'm gone.? You know, how I call to check in and make sure you're doing okay?"? Joshua told me, "That's why I will send butterflies. Butterflies will tell you that I am doing fine and I love you." That he understood and was okay with the idea of going to heaven alone really surprised me.? Then he took our conversation to a new level & truly blew me out of the water."Your daddy wants to see you," Joshua said this in the same tone I might tell the kids that dinner is ready ~ casual & unconcerned."What?!?" was my stunned response."Your daddy wants to see you. I will tell him you love him. Then you can tell him when you come to heaven, too."? All of this was delivered in a quiet, confident voice."Joshie, I would love for you to tell my daddy I love him. I want to see him, too, but he is going to be so happy to meet you!"? I couldn't see my little boy's smile, but I could hear it in his voice when he replied, "He is going to love me!""Yes, he is.? You're so right about that!" I hugged Joshua close, amazed by what he'd said.? Since my dad died in 1993 and Charley's father died six months later in 1994, my kids have not grown up with grandpas & the little kids don't have any memory of their grandfathers at all.? As such, hearing Joshua mention my dad and telling me he'd pass a message to my dad from me was mind-blowing. It brings me comfort to think that my dad will hang out with Joshua and keep him company until the rest of our family joins them in heaven. I believe God gave Joshua the knowledge that he won't be alone in heaven so that he won't be scared. I also believe He wanted me to remember that there are people I love who are in heaven who will be with Joshua.? My little boy won't be alone as he waits for the rest of his family to join him for eternity. What an incredible reminder & reassurance from the Lord!Just as I was about to fall asleep, I heard a quiet but insistent, "Mama!"? I jolted into full consciousness to ask, "What, Joshie?"? "I'm having trouble breathing."? "Do you want your pulse ox on?" I asked, knowing that for some reason, Joshua thinks the pulse ox helps when he's having lots of apnea. He wants me to know if he's not breathing because he thinks I will be able to make him breathe again.? Oftentimes, the blaring alarm does startle him when he's sleeping, which is enough (for now) to stimulate him to inhale again."Yes," came the reply, so I sat up, reached to the end of the bed & grabbed the sensor to attach to his finger.? After turning the pulse ox on, I watched to see the numbers come up before laying back down & wrapping my arm around Joshua once more.? As I did, I whispered, "Your numbers are good, Baby.? You're breathing really well right now."? He sucked in a deep breath & I felt him nod his head in agreement, but there was still tension in his little body, so I lifted myself up on my elbow so I could lean over enough to speak directly into his ear.? "Joshie, you're okay.? I am right here and I will always be here to take care of you.? Nothing bad is going to happen, okay?? I'm not going to leave you. You will never be alone.? I promise."? As soon as I finished, a little arm reached up and wrapped around my neck for a hug.? I kissed his warm, soft little cheek, told him, "I love you forever, Joshie," and he squeezed my neck as he sleepily promised me back, "I love you forever, too, Mama."? Then, relaxed, he snuggled under the covers, closed his eyes & went to sleep.It was a conversation that left me convinced Joshua is hearing the voice of God speaking to him. More & more, I believe the Lord is preparing my little boy's heart to be ready and okay to leave our family to join Him in heaven.? The gratefulness I feel for the mercy of God being extended toward Joshua (and me) is matched by the depth of sadness I feel at knowing time is growing short.? Nothing will make the pain go away, but it is very comforting to know that the Creator of the Universe cares so deeply that He is speaking words of peace and acceptance into a 6 year old and making a way for reassurance to be found by that child's mother in a situation where the only emotion you might think would be felt is hopelessness. 60 people this Written September 15, 2012 4:58pm by Kate Parker Today, September 15th, is three of Joshua's siblings' birthday.? Adam is now 20, David is 11 & so is his twin sister, Sarah.? Joshua made them each a special gift (with a little help from his big sister, Megan, & his mama) since this will probably be the last birthday he gets to spend on Earth with Adam, David & Sarah.? They turned out to be *so* perfect ~ Joshua's handprints & footprints in each sibling's favorite color, a couple special quotes, a picture of Joshua with each sibling, the whole thing framed and a sweet message to the recipient from Joshua on the back (I wrote word-for-word what he told me to put there).? Adam choked up after unwrapping his and both David & Sarah got teary-eyed, too.? Joshua was quite happy that his gifts were so well-received.? He was oblivious to the tears shed by those around him.? Last night before we went to sleep, I leaned over to kiss Joshua & he told me, "Tomorrow is Adam's birthday and Sarah's birthday and David's birthday!"? I confirmed, "Yep, it is.? Are you excited for their party?"? He gave a tiny grin & told me in a very satisfied voice, "Yes. I wait for Adam's birthday. I wanted tell Adam 'happy birthday'."? When I shared this conversation with Adam today, he smiled & looked over at his baby brother, reached his arm out to poke Joshie's foot and asked, "You didn't want to go to heaven before my birthday, Buddy?"? Joshua grinned back at his hero big brother & agreed with a smile, "Yeah." No one asked me, but I'm thinking that was a pretty fantastic birthday present in Adam's eyes. Yes, Joshua loves his other siblings, but he & Adam have always had a special bond and a precious, sweet relationship and it shows.? Despite their 13.5 year age difference, Adam calls Joshua his best friend and Joshua is sure the sun rises & sets because Adam tells it to. It is a friendship... a love... that amazes and blesses all who have watched the two together through the years.? And honestly, I really do believe that if a person can *will* themselves to live, Joshua is going to do it just to stay long enough to be the best man in Adam & Faith's wedding in the spring.? :)? I don't know whether he can do it, but I know he'll try simply because there really isn't anything Joshua wouldn't do for his biggest brother.? It's a love that goes both ways, for sure.40 people this Sign My Guestbook | Read Tributes Written September 11, 2012 11:56pm by Kate Parker It's kind of sad when Joshua wakes for the day at 3pm, then falls asleep on the couch, sitting up, a little before 8pm. At least those 4.5 hours were happy ones. *sigh*Not every day is this short, but the amount of time he's awake is less overall than a month ago. I know that's to be expected.? He's continuing to slide downhill & we jacked up his oxycodone by a little over 60% two weeks ago, so of course he's going to sleep more.? Knowing why it's happening doesn't make it any less sad.? Of course, I'm happy that his pain is under decent control again (it never goes away completely, but we can keep it manageable).? That remains a true blessing and I thank God for it.Yesterday, Joshua was 'cuggling' in the recliner with me and I asked how he was feeling.? He said he was good, except his head still hurt.? I asked if he needed medicine & he answered, "No.? There's only one thing that can help."? Curious, I asked what that was.? "We could fix my head and my back.? Then my head wouldn't hurt at all."? That was a punch in the gut.? I quietly told Joshua, "Baby, we can't fix your head."? He emphatically responded, "YOU can't, but Dr. W can!"? I shook my head and said, "No, she can't.? She can't fix your head or your back anymore."? He wanted to know why not & I explained that there was too much yucky stuff in his head now.? He wanted to know what would happen if Dr. W tried to fix it.? I told him simply, "You would die."? Joshie thought that for a full minute, then replied, "Oh."? I asked him, "Do you WANT Dr. W to try to fix your head?? I thought you didn't want any more surgery."? He answered with a dejected tone, "It doesn't matter.? She can't do it anyway."? That hurt my heart, but I pressed on, needing to know.? "Joshua, you're right.? She can't.? But did you WANT her to?"? He was quiet for a moment before replying, "I just want my head to feel better."After medicating him, I sat with Joshua in my lap once more and we chatted about how heaven will be wonderful because then his head and back will be all fixed for good.? We discussed how God will fix everything so that he never hurts ever again.? I promised him his head would not hurt even the tiniest insy bit.? Joshie believed me, but I could hear in his voice that he couldn't imagine not hurting at all and that brought tears to my eyes.? How is it possible that this little boy is so accustomed to pain that he can't remember what it feels like to NOT hurt?? Oh Lord, as much as it will tear me apart to lose him, please show mercy to Joshua... don't extend his life if You aren't going to heal him here on Earth of the pain that goes along with his current existence.? I hate seeing him in pain that I can't eliminate.? It's the most awful thing & it's an everyday occurrence for him now.? This is a huge emotional roller coaster.? The ups when Joshua is playful & chatty & laughing as he enjoys something followed by the downs when he is pale & sweaty & hurting terribly.? It takes a toll on him & every other member of our family.I'm really worn out.? The past few weeks have been hard, not just with Joshua, but with his little sister, as well.? Now we're home & starting school & that, too, brings an emotional pang since I *should* be teaching Joshua this year, too.? I wish I was.? I wish he was able to do even basic preschool work, but he can't anymore.? I try to not spend much time really *thinking* about that... about the cognitive losses Joshua has experienced.? He was a little boy who was clever enough to delete items off his siblings' accounts on the computer & then, when they implemented a login in order to access their account, Joshua would watch them type their passwords and memorize what keys to hit so he could log in and thus still gain access to everyone's pages!? Charley & I would laugh so hard listening to Adam lecture his baby brother, saying with exasperation, "JOSHUA!? STOP typing my passwords!"? Adam would change his password over & over and Joshua would gleefully memorize it, no matter how long it was, and type it so he could get into Adam's account. I think he loved the challenge. He was such a bright little guy when he was younger, which makes watching him lose cognitive function now so intensely sad. A few years ago, I had purchased some curriculum for Joshua in anticipation of beginning school with him.? I found those books while getting things ready for Emily, David, Sarah & Isaac's upcoming school year and there I sat in the hallway, pulling the books that my little boy would never use out of the bookshelf, tears coursing down my face.? So many things I have missed out on with Joshua... so many things I will miss out on in the future.? Sometimes the magnitude of loss leaves me feeling suffocated. Sometimes it all just hurts too much.38 people this Sign My Guestbook | Read Tributes Written September 6, 2012 8:34pm by Kate Parker *whispering so as not to alert the jinx monster* Joshua has been much more comfortable with his new pain medication dose/regimen. He's only needed 1 breakthrough dose today (last week, he was getting 12-14 per day). I am feeling so, so thankful that Dr. T once again came up with an answer to get Joshie back in a good place. He's more tired. He doesn't walk much ~ instead, he pushes himself around in his wheelchair because he says his legs are tired. I think his balance has gotten worse & the increased narcotics are contributing to his difficulty with walking, but it's okay (sincerely). That's what his wheels are for!?To hear his laughter once again bubbling up is such a precious, wonderful gift. Thanking God for where we're at with Joshua today. Praying we can stay in this place of "good" for awhile.48 people this Written September 3, 2012 10:47am by Kate Parker This morning, I realized something. I will never be ready for Joshua to die. I will never be ready to live life without him. But I am getting to the place where I am ready for this to end. His pain. His difficulty with breathing. The slow, inexorable march toward an end that I would change in an instant if I could, but no longer wish to postpone as long as possible since I can't.Please hear my heart clearly on this:? I am not saying I want Joshua to die.? I am not saying I'm tired of dealing with him and just want this to be over with.? That is NOT at all how I feel, nor are those thoughts that EVER go through my mind!? No... I'm simply saying that the balance has tipped and I see clearly that Joshua's life is now harder & more painful & less... good... for him and that no matter what any of us does to try & improve things, it's not happening.? As such, I'm not begging God to give us more time.? Asking for that would be cruel to Joshua.? It would be selfish of me.? More time isn't going to make anything better for him.? It will just mean more days or weeks or months of pain while we scramble to try & alleviate it to the best of our ability but never fully succeed.? He hurts.? We hurt.? There is no way to make it okay anymore.? Peace for Joshua will only come when he closes his eyes to life here and goes to be with Jesus.? I understand that now in a way I haven't before.Joshua still smiles.? He still laughs.? He still finds enjoyment in playing games on his iPad.? He still asks me to "cuggle wis him".? But his smiles & laughs get cut short by announcements that his head hurts "a wot" and requests for “wots of medcin,” he has to pause while playing games on the iPad to catch his breath, and he spends most of his awake time either in his wheelchair or laying down because, as he has explained to us, his legs are tired so he can't walk well anymore.? In other words, even the things that are still good are becoming affected by his deteriorating brain stem.? It is heartbreaking.? There’s just no other word to describe it.I don't want Joshua to die.? Just thinking about him dying & my having to live without him makes my chest tight & tears come to my eyes.? But watching him hurt, watching him struggle to yawn, listening to him sharply inhale over & over & over all day long as he works to get enough oxygen and seeing him being unable to do 98% of the things he used to do with ease is so sad.? This has to end sometime.? It will end in God's time& I understand that.? I will not do anything to hasten Joshua's death, but I won't do anything to extend it, either.? I don't wish for him to experience one extra day of pain. However many days God has ordained for him is all I want.? My days of begging God to let me keep Joshua longer are over.? They have to be.? I can't ask God to prolong the life of my child who is no longer truly living. ?As much as it will tear me to pieces to lose his physical presence, I have to believe there will be a measure of peace in knowing that once he is with Jesus, Joshua will be whole & healthy… he will breathe perfectly and have strong legs and, most importantly, not one ounce of pain ever again.? I want that for him.? How desperately I wish it could happen here, though, and how deep is my anguish in knowing it can’t.? *deep breath*Just the days You have numbered for him, Lord.? Not more.? Not less.? And please grant Charley, the kids & myself the ability to truly, TRULY enjoy every single good moment & stretch of time that Joshua experiences.? Let us live these days with Joshua to the fullest extent possible so that there are no regrets for any of us when the day comes that You say, “It’s time to go, Joshua.”? Lord, let us greet that day with not only sadness, but also thankfulness that because of your mercy, our little boy will hurt no more, and please help us to hold on to the promises that we will see him again and our joy will be complete because we will all be together with You.Amen.54 people this Sign My Guestbook | Read Tributes Written August 31, 2012 4:09pm by Kate Parker Dr. T increased Joshua's oxycodone again (last increase was 48 hours ago). When I heard the amount he wants me giving Joshua & hesitated before saying, "Okay," Dr. T very seriously told me, "Kate, you are going to have to trust me." *gulp*? I do trust him.? I just don't want to completely snow Joshua with pain meds.? I'll admit it; I'm not ready for that to happen.I am incredibly sad at how fast things are changing with Joshua and I am praying God grants us another "plateau" period to semi-slow this downward track we're on. I am truly hoping & praying that the difficulty he is having now will ease some once he's home again and back in his regular routines.I want to thank everyone who is praying for Joshua, Bethany & the rest of my family.? As I wrote on a friend's Facebook wall, I'm feeling better (antibiotics are kicking in), though tired, and I can truly feel the prayers of everyone supporting me through the days. I don't know how to put it into words, but despite being incredibly sad because Joshua is struggling so much alternating with happiness at how well Bethany is doing post-operatively, I also feel very peaceful. I know God is right here, in complete control, and His timing is perfect, so for whatever reason this is all happening simultaneously, it IS for His purpose and He'll use it for good. That is what I'm holding on to39 people this Sign My Guestbook | Read Tributes Written August 30, 2012 12:01pm by Kate Parker I guess now's a good time to talk about my appointment with Dr. T yesterday since I can type uninterrupted as I sit here in the waiting area while Bethany has surgery. I went into the meeting with a typed list of questions to ask. I handed the list to Dr. T & he read them, then said, "Ah, the list of unanswerable questions." I smiled a little and said, "Yeah, I'm good at those, huh?" He nodded & agreed that yep, I sure was. That was the end of the joking; then we got down to business.On my list, I had asked what we might expect to see as Joshua nears the end of his life. I wanted to know if there were any "landmarks" that could be pointed out that would give us a clue that the end was near. I asked about changing Joshua to a PCA pump and TPN if he gets to the point where he can't tolerate tube feeds & fluids given via g-tube. I asked about changing his meds to something different to try and lessen the sedation effects we're seeing.Dr. T told me that he couldn't give me landmarks because there haven't been any other kids with Joshua's condition & Joshua's always done things his own way, anyhow, so even if he (Dr. T) tried to guess, he'd probably be wrong. Then he went on to say that in his experience, at the end of life, kids generally hit "critical mass" & then accelerate quickly downhill. He would not venture to guess what "critical mass" might look like for Joshua ~ what event or series of events would precipitate the end. He did say he anticipates that we will see more & more signs/symptoms of brain stem problems... more nausea, vomiting, speech deterioration, temperature regulation difficulties, breathing problems, heart rate issues, etc. All the things we're seeing already, but more intense. His pain will increase, too, and we'll keep on top of that to prevent suffering. He said that yes, we can switch Joshua to a PCA pump (for pain) and TPN/fluids when the time comes that it's necessary. He discussed with me the possibility that I might not want to give IV nutrition or fluids if Joshua is at the end... or close to the end... saying that if he's at a point where he's not waking up much or at all due to being heavily sedated with pain medication, perhaps I will not want to prolong things by continuing to give him nutrition. If that makes you sick to think about, then you're right where I was when I heard the words come out of Dr. T's mouth.? He also made it clear that the decision will be mine (and Charley's) to make, not his or any other doctor's, and everyone will respect our wishes when that time comes.? No one is going to withhold fluids or nutrition from Joshua without express permission from his parents.... I just can't fathom giving that permission, but I guess we'll see what the future holds. He said that he can't know for sure how much time Joshua has left, but based on the changes in Joshie's breathing & other symptoms pointing to the progression of his condition, he guesses a couple more months. He said there really is no way to avoid the increasing sedation effects and that it will get worse as time goes on & we are forced to increase Joshua's medication dosages. He assured me that Joshua will continue to get accustomed to each increase in dosage, but that each increase will lessen the amount of time he's awake (which is what we've been seeing for months already). The hardest part of that is not knowing what dose will be the one to completely knock Joshua out... not knowing which increase will be the one to be "too much" and make him start sleeping all the time instead of waking up. He talked about hospice & how it would be entirely appropriate at this time. I explained about our awful experience last year & he was disappointed to hear about it. He said he is going to continue being in close, constant contact with Dr. S & me through this, but it would be nice to have "other eyes" on Joshua sometimes besides mine. NOT that he doesn't believe me or trust what I tell him (he quickly assured me of that), but just that it can help to get a second opinion. I told him I could take Joshua to see Dr. S every week or twice a week if that would help. He said that something like that WOULD be helpful and he'll talk to her about it, so we'll get an appointment schedule figured out. That's basically the gist of the conversation. Now you know why I said yesterday that there was no good news about Joshua. 21 people this Written August 30, 2012 12:27am by Kate Parker Today was an awful day from an emotional point of view. There was no good news for either Joshua or Bethany and lots of really hard stuff. To top it off, I wound up in urgent care getting diagnosed with a UTI, which then necessitated a trip to the pharmacy to pick up antibiotics. Really, it was the icing on the cake today.? I wound up having a 'fall apart' crying jag during a phone conversation with a friend as I shared with her everything the day had held.? Bethany's surgery tomorrow is at 8:30am and will take at least 4 hours.Her tethered cord surgery will be at noon on September 10th.Joshua's new base dose of oxycodone was increased again. He'll continue our present routine of getting something every 2 hours around the clock. Once he's accustomed to this new dose, we'll increase his methadone. Dr. T watched Joshua breathe & confirmed the change we've noticed (his intermittent gasping) is due to symptom progression. We talked about lots of things and I'm simply too tired to write it all out tonight, but I'll share more later.Joshua had a really hard day.? Lots of nausea, not feeling well & sleeping in-between bouts of not feeling well.? I am hopeful that tomorrow will be a better day for him since he won't be woken early or have to spend 4.5 hours in the car followed by hours at the hospital.? He'll be able to sleep until he wakes up on his own & Adam can keep things quiet & relaxed, which should help.?Thanks for praying for Bethany's surgery tomorrow. I will be with her at the hospital at 6:30am (Adam will stay with Joshua at the RMH so he can sleep). Charley will be driving up in the morning (he got out of work late today & was too wiped out to drive safely) & then will go home on Friday since he has to work. I'll post updates on Bethany's page () as I get them from the cardiac case manager. I've been told the first update will be 2 hours into the surgery since the first couple hours will be spent getting all of the lines/equipment into place (peripheral IVs, arterial line, central line in her jugular, potentially a line in her femoral artery, intubated & placed on ventilator, etc). After that, I was told updates would come more frequently.? 16 people this Sign My Guestbook | Read Tributes Written August 28, 2012 10:57pm by Kate Parker I don't want to sound melodramatic, but I am feeling concerned & would greatly appreciate prayer for not only Bethany, but also Joshua. His oxygen saturation, which should be in the mid to high 90% range, is going down into the 70's when he is upright & talking during the day & into the low 80's when he is sleeping. I am positive this is contributing to his head pain, which is getting harder to control despite our giving meds every 2 hours. He asks me to gently rub the back of his neck because it hurts. The tubing that runs along the top right side of his head & down underneath the skin along his neck into his abdominal cavity to drain excess spinal fluid from the shunt in his head seems to be stuck in scar tissue, so any time the tubing gets stretched (like when he turns his head to the left) or if someone touches it when washing his hair or rubbing his neck, it causes him pain. We are giving him oxygen more often during the day to help his O2 levels get back to normal more quickly after each apnea episode.I'm worried about Joshua. I'm nervous about how he will do being away from home for potentially 2 weeks. Stress makes things harder for him & being away from home will stress him. I desperately want to be able to keep him happy & relaxed as much as possible and I don't want him to "tank" while we're up there.I'm apprehensive about this upcoming surgery for Bethany, which I was told today is being done not because it's good timing, but because her heart is bad enough we can't wait any longer to repair it. It's actually not the ideal time because she's only been off oral steroids for 18 days & she got steroids injected just 6 days ago. I'm nervous about my appointment with Dr. T tomorrow since it's going to be a tough conversation. I'm nervous about the pre-op appointment with Dr. I tomorrow since he will be discussing all of the concerns the surgical team has with regards to the repairs they will be doing to Bethany's heart. He will also be the final word on whether or not Dr. W can do Bethany's spinal cord detethering surgery on September 10th (Dr. K said it was fine, but wanted to pass it by Dr. I, too). I'm nervous about the pre-op lab draw because if the Actemra Bethany received 4 days ago (which technically should not have been given so close to surgery, but we couldn't risk not giving it to her & having her flare) has made her neutropenic (white cell count too low) or if her platelets (cells that stop bleeding) are too low, they won't be able to do surgery at all. So... yeah... prayers and/or words of support, encouragement & comfort would be really appreciated. I've said before that it's difficult having 2 chronically-ill, medically-fragile kids and at times like this, it's REALLY difficult. Not just physically, but emotionally. Add in being away from my other kids & husband and... well... it's just a good recipe for feeling overwhelmed & really, really sad. 31 people this Sign My Guestbook | Read Tributes Written August 23, 2012 10:30pm by Kate Parker We're home.? Joshua slept 95% of the way home, which made the trip go pretty quickly (Bethany traveled great, as always).? It's now 8:30pm and he is saying he's tired and wants to go to bed.? He's been awake maybe 5 hours today.? *sigh*I'll be able to meet with Dr. T sooner than 2 weeks from now because we learned today that Bethany's open-heart surgery will be next Thursday, so I'll sit down with the palliative care doctor at some point while she is inpatient and we'll hash out all of the issues pertaining to Joshua.? We (Megan, Bethany, Joshua & I) have to go up on Wednesday morning for pre-op appointments with the cardiothoracic surgeon & for Bethany to have labs/chest x-ray done. Charley will drive up on Wednesday night after work so that he can be there for Bethany's surgery.? He'll stay Thursday & then return home on Friday to return to work Friday night.? Adam will stay home to take care of his siblings.? It feels like we were in a lovely little lull for awhile and now that's over & things are going full-speed with both of our medically-fragile kids.? It's okay ~ I don't feel overwhelmed or out of control, but I do have a lot of things to get organized in a very short space of time (Joshua's meds, which will need refilling while we're in Portland, so I need to get the pharmacy to request a 'vacation override' from our insurance so we can get his scripts filled early... school plans for the kids so they can be doing lessons despite my absence... appointments for Bethany for her Actemra infusion & to pick up her AFOs... grocery shopping & meal preps so the kids at home are taken care.... plus general life stuff with all of the kids & every-2-hours-around-the-clock medication administration for Joshua), so I would appreciate prayer for everything to fall into place. Thanks!? :)30 people this Joshua Parker's Journal Written August 23, 2012 10:46am by Kate Parker Shoot, I forgot to update here last night.? I'm sorry!? I did update Bethany's page, but then was tired and went to sleep.? Joshua was okay yesterday. Some 'urpiness', so I'm thankful we have zofran to give him, as that helped keep everything down. It also increases his overall sleepiness, which I wish didn't happen, but I am trying to accept the reality that he isn't just going to be happy happy happy then die... he's going to have to get worse, sleep more, be less & less responsive and then die. I don't know how to accept that. I do know I have no choice because it's going to happen whether or not I am okay with it (and right now, I'm really NOT). I haven't de-accessed his port yet. He said he wants Adam to do it because Adam does it better than me. :) I went to Dr. T's (palliative care) office yesterday & learned he is, indeed, on vacation. Sigh. We'll have to just stay the course until he gets back. I was supremely disappointed because I wanted so badly to sit down with Dr. T & talk to him about Joshua and the possibility of moving him to a PCA pump and letting us have saline at home to give him when he needs extra fluids, but I guess the meeting was not meant to be. That said, Dr. M (one of Dr. T's colleagues who has come with him to many of his visits to Joshua, so she knows us) called, chatted for a bit, then told me that she would pass on my concerns to Dr. Top & that she felt it was time for him to sit down and talk with me about where we're heading, what the path might look like, how we plan to manage symptoms as they arise, the appropriateness of a PCA for pain, etc. Dr. M said she does not think it'll be an issue to schedule a sit-down meeting to take place the next time I'm in town (2 weeks from now) and told me Dr. T will call me on Monday or Tuesday (if he is utterly swamped after getting back to work).I've got to get moving since the kids are still sleeping and we have to check out of the motel in just over an hour.? LOL? Thank you, as always, for the support & prayers over the past couple of days.? Between Joshua & Bethany, it's been a lot for Megan & me to manage & it helps (mentally) to know we're not alone & others are praying on the kids' & my behalf as we trek from appointment to appointment and deal with surprise ER visits & the like while up at the hospital.24 people this Sign My Guestbook | Read Tributes Written August 21, 2012 11:44pm by Kate Parker It has been a crazy busy day.? Megan, Bethany, Joshua & I left for Portland bright & early.? We'd only gone about 30 miles when Joshua suddenly announced that he felt like he was going to throw up.? As I quickly flipped on my hazards & pulled off the road, Megan was already putting a towel up to Joshua's face as he began vomiting.? He said he needed to lay down, so I got him out of the van & carried him to the passenger side, where Megan laid a chux pad on the ground & I set Joshie on it.? He continued to throw up a bit more, then laid his head on the chux pad for a few minutes while Megan stroked his back & I checked on Bethany.? When he thought he was done puking, I got him back into his carseat and we got going again.? Twice more, he needed me to pull over so he could throw up, and then he fell asleep & didn't wake up for the next 7 hours.? I called our pediatrician to apprise her of the situation & spoke to her nurse.? About 10 minutes later, Dr. S called me to talk about what was going on.? We agreed that Joshua was entering the dangerous place where he goes into "vomit universe," which sets him up for a vicious cycle of vomiting causing head pain causing more vomiting causing more head pain, ad nauseum.? We didn't know if he had gotten behind on fluids or if his increased pain was causing the nausea, but the bottom line was that we knew we needed to get the vomiting stopped ASAP.? Ultimately, we came up with the plan to have Dr. S call the ER at Emanuel & let them know Joshua was coming in & would need IV fluids, a consultation with Dr. T to adjust his pain meds, & perhaps to be admitted.? Before we could take Joshua to the ER, though, we had to take Bethany to her appointment with the geneticist.? After that, we met up with the rep from ATG Rehab (GREAT company, by the way) in the lobby of the hospital to pick up Bethany's new wheelchair.? Once that was all taken care of, we headed to the children's emergency department where, thankfully, we did not have to wait long to get Joshua into a room.The doctor who came in was *fantastic*.? He listened to what had been happening, then asked what we typically did in this situation.? When I told him, he immediately agreed to provide what Joshua needed & within 10 minutes, a nurse had Joshie's port accessed and had drawn labs & hooked him up to a saline IV running at 999 ml/hr (super-fast).Joshua received two boluses of fluid & some IV zofran for his nausea.? When Dr. G came back in to assess how things were going, Joshua was dozing, but his color had improved from gray & obviously ill to just pale.? Dr. G asked me what I wanted to do.? He was willing to admit Joshua, but when I explained that I'd just spoken with our pediatrician (she'd called to find out how things were going) & she had suggested I take Joshua back to our motel, try giving him water through his g-tube like we typically do & see how he does, knowing that if he begins vomiting again, I could bring him back to the hospital tomorrow, and Joshua really did not want to stay in the hospital, Dr. G cheerfully agreed to that plan.? He asked if I wanted to start trying to feed Joshua while staying in the ER for a bit and I asked if he'd be okay with us leaving.? He said, "You know him best!? Whatever you want to do is fine by me."? So I smiled & said I'd like to just go, as it'd been a long day & I really needed to get Bethany to bed since we had to be back at the hospital at 6:15 tomorrow morning.? Dr. G wrote a script for zofran for Joshua since I'd left ours at home (it's been several months since Joshua needed zofran, so it's not a medication I typically bring with us) and said if Joshua got worse, don't hesitate to bring him back.Oh, and even better, we were able to leave with Joshua's port still accessed, so if he does need to go back for more fluids tomorrow, they won't need to stick him again.? We did not get to see Dr. T (palliative care) because no one could reach him.? He didn't return my voicemails or Dr. S's pages, so Dr. S & I are thinking he might be on vacation.? She is going to track him (or his whereabouts) down tomorrow & we'll go from there to figure out what we're going to do regarding keeping Joshua's pain managed.? As of right now, I'm giving him medication every 2 hours around the clock.? I'll keep this schedule until Dr. T gets in touch to change things around.We're now at the motel & Joshua is ready to go back to sleep, so I'm going to head off to bed, as well.? I am hoping & praying that tomorrow won't be nearly as "exciting" as today was. 32 people this Sign My Guestbook | Read Tributes Written August 19, 2012 1:13am by Kate Parker I wish that updating here with happy news was the norm.? It depresses me to know I have to write yet another sad update if I want to say anything.? I just want things to be different. Joshua has had another spike in his pain, which means we are fighting every day to keep him comfortable enough to do anything other than lay on the couch or a bed, moaning about how badly his head hurts.? Three days now.? It's awful.? I got smarter about managing things today & have been giving him pain medication every 2 hours, then supplementing when he needs it in-between.? As a result, Joshua has been able to play with his iPad a little bit.? He's still had stretches of laying on the couch & resting in bed, but he's such a little trooper & rallies when the pain lessens even an "eensy, winsy bit".Last night, he desatted to 80% oxygen over & over & over.? Each time, the alarm would rouse Joshua & he'd begin breathing again.? Finally, he got tired of the alarm & asked me to make it stop.? I complied, adjusting the parameters of his pulse ox to not alarm unless his oxygen dropped lower than 80% or his heart rate slowed to less than 45 beats per minute.? He alarmed just once after that, with his O2 dropping into the 70's.? His breathing has gotten.... different.? He gasps regularly throughout the day & night.? It's not a gasp with every breath during the day (more like every 5th breath), though it does happen more when he's talking, but by nighttime, almost every breath is audible. If I ask if he's having trouble breathing, he says he's not, but it sure sounds like he's struggling. I'm extremely relieved that he doesn't feel like he is, though.His fluid needs have gone up considerably.? I have no idea why.? Yes, he sweats a lot, but that isn't new.? There hasn't been anything different happening that would account for his sudden need for more fluid to be pumped in through his g-tube each day, but whatever the reason, it's something we're addressing by giving an extra liter of water every day.He falls more often, so he walks less.He occasionally chokes on his saliva.? Today, he choked on his spit, vomited a little, then choked on that.? Thankfully, it's not a daily occurrence, but it's happening more often, so it bears mentioning.I don't know if everything that's happening is entirely related to the deterioration of Joshua's brain stem or if the amount of medication he's on is partly to blame, but I guess in the end, it doesn't really matter since we can't stop giving him pain medication & we can't fix his brain stem. I do wonder, though, because if it's the meds, I question if maybe we could switch him to a different medication, one he's not as tolerant to, and therefore have him at a lower dose with less side effects.? I don't know if it's possible, but when we are in Portland this next week (Bethany has a bunch of appointments & procedures), I plan to meet with Dr. T, Joshua's palliative care doctor, and I'll ask him.? If nothing else, I know Dr. T will adjust the base dose of Joshua's meds & that should enable us to keep his pain at a much-lower level with less difficulty, and I will welcome that.I wish the road we were on was more-traveled so there was something of a "road map" to consult as we went along. I wish the doctors could tell Charley & me, "Okay, when these things start to happen, you'll know the end is near."? It's really difficult not having any idea what to expect. I understand the mechanics of what will happen inside Joshua's brain as things slide downhill, but I am not nearly as knowledgeable about what we can expect to see physically.? A sweet friend suggested I contact Joshua's doctors to ask them, collectively, what their best educated guess would be, so I am going to do that.? I understand they can't tell me for sure what will happen, but it would help to have *some* idea.I spent some time tonight reading about what impending death can look like, but I don't know how applicable it is for Joshua.? The websites I read seemed geared toward those dying of cancer or old age, not something like a deteriorating brain stem, and I don't know if the process is the same for every condition or not.? It kind of bites to not have anyone to turn to for answers, and not knowing what to expect makes it difficult to know how to make good decisions anymore or even what constitutes a good decision. For everyone who wants specific prayer requests, here are a few:1. Pray that Charley will be at home when Joshua dies rather than at work. He feels the same way I do ~ that we were there together when Joshua was born, so we want to be there together when he dies. I do not want to have to make a frantic call telling him Joshua is in respiratory failure, which would give him only 3-4 minutes before Joshua's heart would stop & obviously would not allow him to get home in time, nor do I want to have to call and tell him our son is gone.? 2. Pray that when Joshua dies, those of us in the room will be able to tangibly sense God's presence.? I NEED to know God is there.... that when Joshua leaves my arms, he will be in Jesus' embrace, instead.? Maybe that sounds crazy, but I never claimed to have logical emotions.3. Pray for Joshua to die peacefully.? I want it to be an easy transition for him.4.? Pray for Joshua's death to be a peaceful experience for his siblings.? If Joshua dies during the night (what we are praying happens) or in the hospital, Megan, Adam & Emily want to be present.? This will be our first experience with seeing someone die & I would appreciate prayer for the protection of my kids' hearts... I don't want them to be frightened.5. Pray for God to grant us more time with Joshua than the doctors think is possible.*sigh*I can't believe I am having to think more about the death of my little boy & plan for it. It's surreal.? Even though it's not like this is a surprise ~ we've seen it coming for almost 18 months ~ it's still shocking to be here now.? I still hope we've got months left before I have to write the post I am dreading & make the phone calls to friends who won't want to hear the words I have to say, but I have no idea how close we are to Joshua's last day.? If you had asked me a few weeks ago, I would have said I was sure he'd make it to the end of the year & even beyond.? I would have said that I could not imagine him dying any time soon.? After the past week, however, I can't say that anymore.? I don't think he'll die tonight or next week, but I can't imagine how he will make it to the end of the year if this downward spiral does not slow down.? It's heartbreaking to contemplate.? I feel like I'm sliding down a muddy slope, frantically trying to dig in my heels and grabbing wildly at the ground in an attempt to slow the inexorable descent toward a destination I just do not want to go to.? Not quite the picture of Christian acceptance of God's will, I know, but there ya have it. I know God has a plan He's working out & I trust Him, but I still don't want to have to DO what He has said I am going to have to do.? I don't want to lose Joshua to death.? I don't want to be separated from my son for only-God-knows-how-long.? I want to peacefully accept God's will, but darn it if I know how to do that when it involves Joshua dying.? I realize that in the end, it won't matter what I want because Joshua will die when God has ordained it to occur, but I really am hoping that when that day comes, I will be able to open my arms & let Joshua go with a hug, a kiss, an "I love you," and complete faith that God is still good.Written August 15, 2012 8:22pm by Kate Parker I took Joshua to see his pediatrician, Dr. S, for his monthly check-in. He's 4'3", 60 pounds, heart & lungs sound great. If it weren't for that pesky brain stem issue, he'd be awesomely healthy!Dr. S took me into an empty room to talk (Megan stayed with Joshua), saying in front of the kids that she wanted to give me updated information from Dr. T (palliative care) & go over some things. As it turned out, we needed to update Joshua's POLST paperwork to reflect that he is now at "end of life" status & discuss the legalities of how we plan to manage Joshua's care from here on out. She explained that when children die, it's typically from accidents or diseases like cancer ~ things that have established protocol that is followed in order to let a child go. But when you have a child like Joshua where there's no set protocol, there are legal ramifications for ceasing treatment & we need to have everything covered so there is no room for anyone to accuse either the doctors or Charley & me of negligence or worse, doing something to make Joshua die. She said the hospital lawyer will be drawing up a document outlining, in detail, the reasons it is medically appropriate to cease treatment for Joshua and the plan of care for the remainder of his days and then Charley, myself & she will all sign it. Then Dr. S, at Dr. T's request, talked me through about a dozen "graphic possible scenarios" (her words, used as she apologized for having to do this to me) to determine what we would want to do in each situation (things like if he is choking on secretions, would we want him suctioned, or at what point would we discontinue fluids & feeds, or what would we do if one of his shunts malfunctions). Bottom line is that Joshua remains a DNR (do not resuscitate) with the addition of using comfort measures only to allow a natural death (which is now called AND ~ allow natural death). IF he were to get an acute infection in the near future, when he's still doing pretty well (all things considered), then we WOULD treat with antibiotics & IV fluids, but if he were to get something like pneumonia at a time when he's mostly-sleeping and/or not very responsive, then we would treat with IV antibiotics because we don't want him to die of suffocation as his lungs fill with fluid, but we'd withhold IV fluids & food & allow him to die peacefully.There was more, but honestly, typing out just that much made me feel as physically sick as I did when Dr. S & I were having the talk, so I'm going to stop. You get the idea.? 28 people this Sign My Guestbook | Read Tributes Written August 13, 2012 4:01pm by Kate Parker Yesterday was a better day for Joshua, without major pain that we couldn't control.? Today is good as far as his head not hurting, but not great as far as interaction goes.? Joshua woke up around 10:30am and then got tired & laid down on the couch at 1pm, where he fell asleep & currently is still napping.? At least he's not hurting, though.? I'm thankful for that.? I don't really know why he's got the increased sleeping thing going on since we haven't increased his meds and he hadn't been sleeping nearly as much, but I am guessing it's related to overall decline.? The kids & I were able to get a few thumbprint pendants made with Joshua yesterday.? We'd like to make some more, but need to accommodate Joshie's ability to participate, so I anticipate this being a multi-day project.? We're all happy that we got *some* done, though.? I don't have a lot to say right now, but please know my family & I appreciate your prayers & well-wishes.? We know God is still on the throne, still working out His plan, and we try to rest in that knowledge as much as possible.? It's comforting, but it doesn't make the hurt go away.? 39 people this Sign My Guestbook | Read Tributes Written August 11, 2012 10:13pm by Kate Parker No pictures today.? Joshua has had a lousy day, culminating with head pain so severe he was lying on the couch pasty-white & sweating up a storm while he waited for extra doses of oxycodone & scheduled doses of oxy & methadone to kick in.? It never really did and he eventually went to sleep at about 4pm, which he does only when nothing else is working to help him feel better.? It is an escape mechanism for him.I saw just one smile from him in the 4 hours he was awake.? He didn't eat or drink anything.? He played on the computer for less than 20 minutes before needing to lay down.? He barely spoke & was in no mood to interact.Days like today are awful.? Written August 10, 2012 1:23am by Kate Parker Sorry for no update.? I had thought we'd be able to do the craft, but Joshua wound up having head pain & a stomachache after eating noodles (he just can't seem to digest them anymore), so he was not "up" for making thumbprint anything.? I am hoping to do it on Saturday (can't do it tomorrow because I'll be at the hospital with Bethany for 6+ hours doing her scheduled infusion), so if my plan comes to fruition, I'll share pictures then.It used to be that Joshua slept the greater part of one day and would be awake the greater part of the next two days.? Now that's flipped.? He sleeps 18+ hours two days in a row and then about 10 hours on the third day, so we get 5-6 awake hours for two days and then 12-14 awake hours.? We look forward to what we have coined "awake days".? Thankfully, Joshua is generally happy when he's awake, so we get to have fun with him. The Lorax came out on DVD a few days ago and we picked up a copy for Joshua.? That is the first and only movie he has ever seen in a theater.? Taking him to the movies was an item on Megan's "bucket list" for things she wants to do with Joshua before he dies, so The Lorax was the movie we took him to.? I parked his wheelchair in a spot designated for handicapped individuals and then carried Joshua up about 6 rows.? He reclined on my lap for the entire movie and Megan and I agree we will always remember Joshie's giggles throughout the movie.? He absolutely LOVED it!? When we showed him the DVD, he clapped his hands and immediately wanted to watch it.? Once more, we smiled as we listened to him laugh at the scenes that humored him.? He tries to sing the songs, too, which is highly entertaining & utterly CUTE!? His little voice is just so dang sweet!Overall, things are fairly status quo at the moment.? Week by week, we see gradual changes in the downhill direction, but day to day, things seem mostly okay and I am very grateful for the good times we are having.? I need to head to bed (too many late nights are catching up), but if all goes well, I'll have some cute things to show off in a couple of days.Goodnight!31 people this Sign My Guestbook | Read Tributes Written August 6, 2012 5:23pm by Kate Parker Super-quick update ~? Joshua woke up happy & has been doing much better today.? Thank you for the prayers for him!? We're going to work on another craft today, so I'll share pictures when we're done.? :)35 people this Sign My Guestbook | Read Tributes Written August 6, 2012 2:43pm by Kate Parker If anyone sees this tonight and wants to say a little prayer for Joshie, please do. He's had a bunch of breakthrough head pain today (he didn't wake up until 6:30pm, after 18.5 hours of sleep) & hasn't felt very good, but we don't know exactly why. He's not sick, but his GI tract just isn't functioning as well as it used to (which wasn't great, anyway), so he winds up with more tummy pain more easily. He also has been having more trouble breathing (that's how he explains it), but there isn't anything I can do to help him except adjust his position & sometimes give him oxygen (which does nothing for him but is a psychological help). Tonight marked the first time he wanted something and no one could understand what he was saying. He repeated himself over & over, finally getting so frustrated that he began crying. He was unable to show us what he wanted & he couldn't think of another way to explain. Emily & I made it into a game, asking him if we could play "20 Questions" & try to guess. Joshua wouldn't speak, but he would nod or shake his head. It took awhile, but we finally figured out that he wanted help with one of his computer games. It was horrible not being able to understand him, though.I just want him to feel better, to be happy, to not have any of this happening at all. I know that's not realistic, but if you want to pray that God will slow down the decline, that'd be great .Written August 5, 2012 5:50pm by Kate Parker After reading the suggestion that I make Joshua's silhouette profile in one of the guestbook comments, I got to thinking, which led to this:'m really happy with how it turned out!31 people this Sign My Guestbook | Read Tributes Written August 2, 2012 12:14am by Kate Parker Ah, you guys are the best!? Thank you for the wonderful memory-making suggestions!I bought paper today to do silhouettes.? I got what I *think* will be a very cool idea from things suggested.? If it turns out, I'll share a picture!? :)I knew about the Thumbies necklaces that a few people mentioned.? The woman at the mortuary where we made Joshua's arrangements shared the Thumbies brochure with me and about a month later, a sweet friend emailed me to say that the Lord had impressed on her & her husband that they should gift me with a Thumbies necklace after Joshua dies.? That amazed me because I knew as soon as I looked through the brochure that I wanted one, but also knew I wouldn't be able to afford it and I hadn't told anyone about wanting one before my friend contacted me, not even Charley.? All I remember saying to God right after looking at the brochure was, "God, I would love one of those." It wasn't even a "formal" prayer, but God cares about us & wants to give us good gifts! (Matthew 7:9-11)? Incidentally, that conversation with my friend also confirmed for me the impression God had given me that Joshua would not be healed here on earth, but rather, he would be healed when God took him to heaven (why else would I need a Thumbies necklace?).? I do want to take one moment to express my preference that no one refer to Joshua as an angel once he has died because a child does not become an angel in heaven.? Human beings are not angels.? When we die, we do not become angels.? We are given a glorified body, but it is in human form, not with wings like an angel.? Angels & humans are entirely separate creations of God's. The Bible is clear about that and, as such, it makes me uncomfortable to hear anyone talk about how Joshua will "earn his wings" or "be an angel" or "watch over us" (aka 'become a guardian angel').? None of that is Biblical, so I don't believe it.? I am satisfied with knowing Joshua will be made perfect in God's image in heaven.? He won't be transformed into an angel, though, so please try to not say those things to me.? I'm not angry & I am not trying to offend anyone.? I'm just trying to explain how I feel about this topic.? I know it's a sensitive one for anyone who has had a child die & I don't mean to hurt anyone's feelings.? I know people mean well when they say such things. I just feel strongly that as a Christ-loving person, I need to talk about God's Word as accurately as possible & share what I believe to be true when the situation arises, which, right now, means not perpetuating the myth that children turn into angels or get wings when they die.Anyhow, going on....I love the idea of making some of Joshua's clothes into pillows for his siblings.? Stuffed animals are adorable, but the siblings who will be aware of Joshua's death & will be impacted by it are almost-21, almost-20, 13, twins who are almost-11 & almost-9 (yes, lots of birthdays are coming up in our family, LOL).? They are all pretty much past the stuffed animal stage and while I do believe the younger kids would enjoy snuggling with a stuffed animal that was Joshua's (and he has about 20 that live at the foot of his bed, so they can each choose one or two from that collection), I think a pillow will be much more their "style".? My friend, Basia, has offered to help me sew the pillows (thanks again, B!) & I think the kids will love them.? Thanks for the great suggestion!!!I would love to have a small quilt/throw made from Joshua's clothes that I can wrap around me.? That was a really wonderful suggestion, too, and I plan to do that after he no longer needs his clothes.The link to the Pinterest homemade Thumbies is fantastic ~ I will be doing this with the kids.? Hopefully they'll turn out well... I'll share pictures after we do it.Using Joshua's hair is a lovely idea.? He doesn't have long hair or even "longish" since he prefers a close-cropped style and with the copious amount of sweating he does, super-short hair works best for him, which would make getting a "lock" of his hair difficult.? Thankfully, however, I have a bunch of his hair from his surgeries last November.? When almost half his head was shaved, the surgical nurse was kind enough to put a big chunk of Joshie's hair in a baggie for me.? I will share that with the kids who want a piece of their brother's hair.? Some of them also want a tiny bit of Joshua's ashes after he's cremated to put into a locket (the ashes would be in a tiny vial, not free-floating), so I was thinking I could incorporate the ashes & hair into a piece of jewelry for each of the girls and I'll think of something for the boys that will be meaningful to them.A few hours after I read the idea about using some of Joshua's hair in jewelry, I learned that one of my friends has started an Origami Owl business recently. I had no clue what that was, but when I went to her site () & saw it was "jewelry that tells a story", I immediately thought about the suggestion given here of using a bit of Joshua's hair in a locket and realized this was the perfect way to do it!? Another incredibly special friend who makes beautiful stamped jewelry is going to make a special disc for me to put in a locket (it'll say "Joshua") & I will put charms that are significant for Joshua in the front of the disc & the ashes & hair in the back so I know they're there, but not in a completely-obvious way that might make others uncomfortable if they knew what it was.? The timing of Mel's Origami Owl link being shared with me the same day I received the suggestion of using Joshua's hair in a piece of jewelry was a beautiful sign of God in action & I am happy to have received it!The verse shared with me, that the Lord is near the brokenhearted & saves the crushed in spirit (Psalm 34:18) was exactly what I needed to hear. Thank you, Sarah, for reminding me of that particular Truth.? I so appreciate friends who hold me up in spirit when the circumstances of life are so dang hard.And Michaelanne, you were speaking my language when you shared that song!? I'd never heard Kutless' "Even If", so I pulled it up on YouTube and Megan, Adam & I listened to it together.? Definitely a tear-inducing song for all of us!? Thank you so much for sharing it!? I admit, I was kind of blown away that someone I don't know would hear a song on the radio & think of Joshua & my family... how amazing is it that God can bring people into our hearts & minds like that?? I am touched, sincerely, that you care & I really do love the song.? It's been added to our family's list of "Joshua songs" ~ songs the Lord has given us that are significant for what we are going through with Joshua.? My big kids & I really liked the suggestion of having a duplicate of an item that is special to Joshua & sending one to be cremated with him while we keep the other one.? For us, that will be a Beanie Baby alligator ("Swampy").? It is Joshua's favorite beanie and he is on his third one now, having worn out the other two (you can only wash Beanie Babies so often before they fall apart).? I will get another Swampy, which I am absolutely certain Joshua will be MORE than happy to love on (*grin*) and then we can keep it with us while sending the 'twin' with him.To everyone who offered suggestions, THANK YOU!!!!!? I am so grateful for the ideas shared because so many of them are simple & easy to do, yet will be so meaningful for my family.? I had felt a kind of desperation ~ that "What am I missing?" feeling ~ but now I feel better.? I've already had Joshua do voice recordings for his brothers & sisters using ceramic hearts with his handprint on the front, & when you press on the heart, it activates the voice message ~ Joshua did one for each member of the family, saying whatever he wanted to each sibling & his dad & me ~ and those, combined with the other things we've done plus all of the other wonderful ideas given here, make me feel like I've got the bases covered as far as memorabilia that will be significant & meaningful for my children (and Charley & me) after Joshua goes to heaven.? It won't be enough... only having Joshua still here would be enough... but hopefully having these tangible reminders will help soothe our hearts during the really-tough times.? We know God will be ever-present & will give us comfort, but I am really hoping that having things we can touch & hear & smell & see that remind us of Joshua will help, too. Thank you, again, for your help.? It has sincerely been helpful & I am truly appreciative of your input!35 people this Sign My Guestbook | Read Tributes Written July 29, 2012 10:08pm by Kate Parker Joshua is good.? He's sleeping, on average, 15 hours out of every 24, but for the hours he is awake, he's a happy little guy who smiles more often than not & enjoys playing on the computer or his iPad, looking at books, "cuggling" with his mama or big brother, Adam, building with legos or pop beads (a favorite activity to do with brothers Isaac & David & sister Sarah), painting pictures with Emily and going for walks (he rides in his wheelchair) with everyone.? There are days when he feels good enough to go visit Daddy at work, too, which makes Charley & his co-workers grin when they see Joshua coming in the door.? Almost all of his apnea occurs when he is awake, and he regularly desats when he is talking or moving around a lot, but he recovers on his own without stimulation or reminders to breathe, and we're actually almost accustomed to the gray/blue coloring that appears around his mouth and the dark purple that appears under his eyes during these episodes.For the greater part of every day, we aren't focusing on the fact that there is nothing more we can do to extend Joshua's life.? The younger kids are thrilled that their baby brother won't be having more surgery because to them, it means Joshua, Adam & I won't be far away in the hospital for a month or more.? They understand that not doing surgery means Joshua will die sooner, but they're great at living in the moment & not thinking too far down the road, so they aren't sad right now.? The bigger kids, Charley & I are a bit more emotional about the situation, and while we aren't thinking about Joshua's death all day long every day, we really can't forget about it, either.? Every headache, apnea episode, breathing abnormality or other symptom is a reminder to us, but we are all trying to use those reminders in a positive way, as a nudge to enjoy Joshua as much as we possibly can today, rather than allowing it to make us sad.There are times I look at Joshua when he's having a good stretch during the day, and think, "He isn't DYING!? He's going to be fine!? What are you so worried about?!?"? Crazy, right?? I think things like, "Doctors are wrong all the time. Maybe they got the diagnosis wrong.? Maybe he will surprise everyone by living until he's 10!"? Then I invariably make the mistake of speaking one of my crazy thoughts aloud to Megan or Adam, and they shake their head and quietly say, "No, Mom."? Then I sigh heavily & admit that I know they're right.? And they are.? I know the truth.? I've seen the intraoperative pictures.? I've seen the MRI. I see the changes in Joshua's level of functioning. I hear him gasp as he sucks in a big breath to compensate for the more-shallow breathing that has become his norm. I know.? Yet despite knowing, my brain (or maybe it's my heart) almost refuses to believe it.? It's hard to explain, this duality of thought.? The knowing something, but not wanting to believe it's true.? If denial could cure him, I would keep my head buried in the sand forever.I think what is hardest for me right now is knowing what's coming. How many times have I watched Joshua become increasingly symptomatic as a result of scar tissue progressively blocking the flow of CSF & increasing pressure in his head, which compresses his brain stem & causes him to experience more episodes of temporarily not breathing and his heart beating very slowly?? Too many, though in the beginning of his life, the symptoms didn't include apnea.? Each time, Joshua's brilliant neurosurgeon has gone into his head, removed scar tissue & shrunk the tissue of his cerebellum to remove pressure from that dysfunctional, deteriorating brain stem.? In doing so, she has "bought" Joshua more time to live & more time to be with his family & friends.? Now we know there won't be any more "buying time," no more extensions, which means that when the progression of symptoms gets going full-force, like a stone rolling down a hill & picking up speed as it goes, we will know the end is coming & there won't be any way to slow it or thwart its arrival.? Knowing that kind of really sucks, but I guess the silver lining is that, barring a sudden herniation of his cerebellum causing instant death (which, yes, could happen at any time), we will not be taken by complete surprise when Joshua dies.? The biggest blessing is that Joshua's death *should* be peaceful for him.? If he stops breathing while he's awake, the lack of oxygen will cause him to lose consciousness & then he'll drift away.? If he stops breathing at night while he's asleep, he'll never be aware that it's happening.? I do wonder if he would have some feelings of panic if he stopped breathing during the day & didn't start up again, but I suspect (because I don't know for sure) any momentary fear would quickly subside as the oxygen concentration in his blood decreased.? No matter how it happens, I want to be there when he dies.? I was awake, aware & present when Joshua was born; I want to be awake, aware & present when he dies.? I want to know that his last moments on Earth were spent surrounded by his family, being held & kissed & loved.? That is a request I have asked God to grant me and I hope He does.? Charley, Megan, Adam & Emily want to be with Joshua, too.? David, Sarah & Isaac don't want to watch their brother die, but they have all said they want to spend time with him afterward so they can be convinced he's really gone.? We will make sure that happens.? Now that I am thinking about it, I need to write down what each of my kids has told me they would like to do after Joshua dies and give the list to a friend (who will come over as soon as I call her) so that she can help to make sure the little kids all get to do the things that are important to them.? I don't trust that on the day Joshua dies, any of us will remember Isaac wanted to read Joshua a story one last time or that Sarah wanted to get one last hand print for the scrapbook she is making, and once his body has been given over to the care of the mortuary, it will be too late.? I don't want my children to be filled with the regret that comes from thinking, "Oh, I wish I had remembered to....."? or "Oh no!? I wanted to..... " Their sadness will be hard enough to face on top of Charley & my own broken hearts without any regrets making it worse.? I'm thankful I have precious friends who will come help in those first awful hours so I don't have to remember everything on my own. I'm also thankful Dr. W put in the VP shunt last November.? For those that don't remember, that's a tube that goes from one of Joshua's ventricles in his brain (where CSF is produced) to his abdomen, allowing extra fluid to drain and get reabsorbed by his body.? If he didn't have the VP shunt, there would be no way for cerebrospinal fluid that is blocked by scar tissue to drain, which would increase the pressure against his brain and, subsequently, his brain stem, which would lead to his death.? Because he has the shunt, some of the fluid that is blocked by scar tissue can drain through the shunt catheter.? Unfortunately, more fluid will be produced & blocked by scar tissue than the shunt can drain adequately, which will lead to the increased pressure against his brain & brain stem eventually.? Already we can see evidence of this happening on the MRI Joshua had last week.? He has always had tiny ventricles (caused by pseudotumor cerebri) and once he got the VP shunt in November, his ventricles disappeared from sight on MRI and CT scans.? They collapsed.? Now, however, his ventricles are almost normal-sized.? While that may sound like a good thing, it's not.? It indicates his shunt is not draining as effectively as it used to and there is fluid building up, resulting in his ventricles being dilated, and eventually Joshua will have symptoms from the increased pressure against his brain/brain stem.? Still, I am completely convinced that without the VP shunt, we would have lost Joshua already.? With scar tissue blocking the flow of CSF the way it currently is, it's the shunt that has continued making a way for blocked fluid to be moved out of Joshua's skull.? I think it's really incredible that the VP shunt, which Dr. W had always believed would kill Joshua (and was the reason she resisted putting one in until he was literally at death's door at the end of last year & we had nothing to lose by giving it a try), has actually ended up extending his life.? God really does work in mysterious ways!LOL? I just re-read what I've written and darn, I am all over the place, aren't I?? Ah well, sometimes the whole stream-of-consciousness journal entries are the most cathartic for me, even if it means they're not so easy for a reader to follow.? :)? We are not living as though Joshua is absolutely going to die by December 31, 2012, but we are living with the understanding that he will die sooner than we are ready to let him go.? As such, we are trying to think of what things might be really valuable for us to have as memories once Joshua is gone.? We have hand castings of his hand holding each one of our hands.? I have voice recordings that Joshua made for each member of our family.? We have pictures & videos.? I have an album that has a voice-recorded message for each picture ~ that is for the entire family.? What else?? What other memory-making things should we do with Joshua?? If you have any ideas for inexpensive things, please leave me a comment in the guestbook. I know there won't be any "things" that compare to having Joshua with us, but if there are "things" that could help make bearing the pain of his absence even a fraction easier, especially for my children, it's worth it to do/obtain those things.? No amount of preparation is going to make losing Joshua even remotely okay for Charley or me, but as a mother, I feel like I *have* to try to ease the devastation for all of Joshua's brothers & sisters.? Even if I fail, I hope that having special pictures or hand castings or his voice to listen to will bring them comfort in ways I won't be able to.28 people this Written July 24, 2012 6:29pm by Kate Parker Joshua did well during his MRI & in recovery afterward.? He slept soundly for the next 7 hours, through his appointment at the neurosurgeon's office & Bethany's appointment with the general surgeon & Megan & my visit with the hospital chaplain and child life specialist (both have become special friends over the years).? We're back at the motel now & Joshua is playing with a new toy he received in honor of his courage.The meeting with Jenny (Dr. W's P.A.) was very emotional & thus very difficult.? The finality of today hit me in a way I was not at all anticipating, nor was prepared for. Joshua is done with treatment at Legacy Emanuel. Not because he was sick & got well. He's done because there is nothing more anyone can do to extend his life. I know we KNEW all of this... but something hit me differently today. Maybe it's because now we're officially done... the last test is complete & the last appointment has been had. Maybe it was seeing Jenny cry as she kissed a sleeping Joshua goodbye, then quietly told me she wishes they could have fixed him & asked me to let them know when he dies.I'm sorry; I don't know exactly what I'm trying to put into words.? After I've had some time to think things through, I'll try again.? I just wanted to keep my word ~ I said I'd update, so I wanted to. Bottom line is that Joshua came through today beautifully & is okay now.? Thank you for praying for him today.? I appreciate that so much.41 people this Sign My Guestbook | Read Tributes Written July 24, 2012 10:58am by Kate Parker Thank you SO MUCH for the comments this morning!? Thank you for thinking about Joshua & Bethany and for coming here to tell me you were praying.? Omigosh, I can't even tell you how much it meant to see those messages this morning.? Joshua is having his MRI right now.? For the very first time in doing this procedure, I got a bit emotional (not crying, but choked up). I think I was overwhelmed at how God blessed us with the very BEST anesthesiologist & nurse this hospital has in the MRI clinic (seriously ~ we've had 'em all over the years) to be the ones taking care of Joshua. The nurse accessed Joshua while he was in his wheelchair, making it comfortable for him. The anesthesiologist held Joshie's hand & chatted with him, keeping him so distracted he didn't even notice when the needle went in (I did the cold spray). Then the anesthesiologist invited me to come with them, so I was able to put Joshua on the table & get him comfy there & give him kisses. I talked to him while they put Propofol in his IV & drifted off to sleep. It was as perfect as it could possibly be.Please do pray that everything goes fine with the anesthesia. It *should,* but with Joshua being as fragile as he is, there's no assurance that simple anesthesia will stay simple. Dr. L did ask if I wanted to lift the DNR order, just in case Joshua has anesthesia-induced breathing complications. I said yes. That said, I anticipate everything being fine.? I'll update later after his appointment with the neurosurgeon.And honestly, thanks again for remembering what is happening today & praying for us.? I'm so thankful.27 people this Sign My Guestbook | Read Tributes Written July 21, 2012 1:43am by Kate Parker After sleeping the better part of the last 2 days, Joshua woke up at 8:30am (waaaaay early for him), HAPPY & announcing that he needed a bath because he is stinky & sweaty. Oh, and he said he would like his hair washed, too ~ he said that even though he knows he doesn't NEED to have it washed, he still wants to wash it (believe me, it NEEDED to be washed! LOL). Then he traipsed down the stairs (holding onto the railing to get down each step) & loudly announced to David, Sarah & Isaac, "I'm UP!" with a huge laugh. They all cheered & excitedly greeted him & all four played together very happily for a long while. Aaaaaahhhh, if only every day could be like this!? It was a blissful way to begin today.We head up to Portland on Monday afternoon for Joshua's last brain MRI, which is scheduled for Tuesday morning.? He'll see Jenny, Dr. W's P.A., after the MRI so his LP shunt can be reprogrammed (the MRI magnet changes his shunt setting, so Jenny has to use a little contraption to put it back to the correct setting again), and then Dr. W will evaluate the MRI & tell me what she sees.? I already know the scan is just to confirm that there's nothing she can do, so I am not expecting anything from it.? The only reason Charley & I agreed to do the MRI was for a sense of closure.? I get a copy of every MRI or CT scan that Joshua has and I know what I'm looking at on all of them.? It will be helpful to have this last MRI to look at & KNOW that yep, it's impossible to do anything surgically. Bethany has appointments on Tuesday & Wednesday, so Megan will be coming along to help me out with the two littles.? I'm not anticipating any earth-shattering news during this trip, so hopefully I won't have anything unpleasant to write about when we get home again.Written July 14, 2012 6:01pm by Kate Parker Joshua is happy, which makes our family happy.? He has adjusted to the increased level of oxycodone with the only real drawbacks being that his processing speed is slower & he lays down for a rest/nap in the afternoon each day.? Other than that, he's good.? He isn't sleeping any longer at night than he was before we increased his oxycodone & his oxygen saturation level and heart rate aren't any different than they were prior to the increase.? So thank you to everyone who has been praying specifically for Joshua to not be negatively impacted by the jump in his pain medication ~ God answered that prayer.Dr. T was right and the best we get is for Joshua's head to hurt "only an eensy bit," but thankfully, we are able to achieve that level of comfort & maintain it now.? We've increased the amount of water we give him through his g-tube each day, too, to offset dehydration since it's so hot now & Joshua sweats a lot.? The overall effect has been good.? He is back to smiling, giggling & having better days, for which I say, "Yeaaaa!? Thank you, God!"Now that he's not so focused on his head hurting, Joshua has resumed entertaining his family with the funny things he says.? Last night, Charley was sitting on the couch with his head relaxed backward & his eyes closed.? Joshua walked into the room and asked, "Why you closin' yous eyes, Daddy?"? Charley told him, "Because I have a headache."? Joshua asked, "You have a headate?"? Charley opened one eye & affirmed, "Yes," then asked, "Can I have some of your medicine?"? (he was kidding)? Joshua paused for a moment, then answered, "No!"? Charley grinned as he asked in a fake-sad voice, "Why not?"? Joshua thought about it, then replied, "'Cuz you don't have a tubie!"? (a g-tube)? Charley & I busted up laughing, which made Joshua insist, "You can't eat it 'cuz it tated ba-duting!" (tastes disgusting)? That made us laugh harder.? I asked how he knew it tasted disgusting and he answered, "I burp!"? LOL? Charley assured Joshua that daddy didn't really want his medicine, to which Joshua said, "Otay.? Dood!" (good)? Charley leaned toward me & quietly told me, "He sure is a funny little boy."? I, of course, agreed.? He really is... when he's feeling good.? And I am so, so thankful that right now, we are being blessed with these good days.? They're such a gift & everyone in my family recognizes that fact.When Megan and I were driving home from Portland on the 3rd (with Emily, Joshua & Bethany), we were both feeling absolutely crushed emotionally from the news we'd heard from Dr. W regarding Joshua. My iPod had been displaying the "less than 20% battery power remaining" message before we'd left the hospital, so I knew I wouldn't have more than 30-45 minutes of listening to music before the battery would die, and I asked Megan if she wanted to listen to music then or later into our trip.? She said to go ahead and play it now.? Neither of us was feeling up to choosing songs, though, so when Megan suggested I "put it on random," I did.? Now, I have a mix of music, both Christian & secular songs, but the entire way home, the songs that played seemed to have been hand-picked for Megan & me to hear at precisely that time.? Yes, my battery that had less than 20% remaining lasted for another 5 hours of constant playtime (thanks, God) and the songs that played ministered to us as we drove (thanks again, Lord).? After the first 5 or 6 songs, Megs and I glanced at each other and agreed that it was just a little coincidental that every song coming up on the iPod spoke to our hearts, and Megan began writing down the song titles as they played so that we could look back & remember how God had met us in the midst of our pain that day.? It was comforting to be reminded of God's love & His presence when I was hurting so deeply.? Some of the playlist that we listened to included songs that I'd heard a hundred times before, but had never struck me as particularly meaningful until that moment on that drive home.? "Stronger" by Mandisa..... "Your Love" by Brandon Heath.? And then there was? "Get Back Up" by TobyMac & "No Matter What" by Kerrie Roberts.? Those two sank deeply into my heart & have been an encouragement & comfort these past few weeks.? These lyrics specifically "spoke" to me:From "Get Back Up": Wide awake in the middle of your nightmare,You saw it comin' but it hit you outta no where,And theres always scarsWhen you fall back farWe lose our way,We get back up againIt's never too late to get back up again,One day you will shine again,You may be knocked down,But not out forever.From "No Matter What":I’m running back to Your promises one more timeLord that’s all I can hold on toI’ve got to say this has taken me by surpriseBut nothing surprises YouBefore a heartache can ever touch my lifeIt has to go through Your handsAnd even though I, I keep asking whyI keep asking whyNo matter what, I’m gonna love YouNo matter what, I’m gonna need YouI know that You can find a way to keep me from the painBut if not, if not - I’ll trust You No matter what When I’m stuck in this nothingness by myselfI’m just sitting in silenceThere’s no way I can make it without Your helpI won’t even try itI know You have Your reasons for everythingSo I will keep believingWhatever I might be feelingGod You are my hope and You’ll be my strengthI want to thank everyone who has been thinking about & praying for Joshua, me & the rest of our family.? I can honestly say that I feel better ~ more at peace with where we're heading ~ and I have been reminded so many times in the past 11 days that God is in control & has a plan that will be for not only Joshua's ultimate good, but the rest of my family, as well.? I have known & believed that the presence of pain in my life does not mean God has abandoned me or that He is being cruel, & now I am experiencing that truth as He wraps me in His love & is present to offer comfort in tangible ways each time I turn to Him.? Day or night, He is always there, and He gives me songs that speak to exactly what I am hurting about at every turn, as well as friends who offer hugs & words that remind me I am not alone & I am not on this journey by myself.? Thanks, also, to everyone who has shared their hearts with me via comments in the guestbook or email.? Your words bolster me when my spirits are down.? Only God knows exactly what lies ahead, but Charley, the kids & I will hold tightly to Him so that we can get through each day.? As always, we continue to pray that God blesses us with much more time with Joshua than any doctor would think possible, and we thank you for being with us as we walk this road.33 people this Sign My Guestbook | Read Tributes Written July 11, 2012 12:26am by Kate Parker I talked with Joshua's palliative care physician today & during the course of our conversation, I mentioned that Joshua is never without pain & I asked if it is going to be possible to get Joshua pain-free & keep him that way. Dr. T answered, "No, not anymore."? He said we've reached the point where the goal needs to change from eliminating Joshua's pain to keeping it at a level that allows him to function & not have to focus constantly on the fact that he hurts.That was hard to hear, even though it validated what we're experiencing with Joshua.? He used to tell me right away when his head began hurting so I could give him medicine, and when I would ask how his head felt, he would answer, "Good. It's not hurting at all."? Nowadays, though, he doesn't tell anyone that his head hurts until it's to the point that he can't focus on whatever activity he is trying to do.? Then he'll ask for medicine because, as he says, his head hurts really badly.? I recently asked why he doesn't tell me when his head hurts just a little bit so that I can give him medicine & try to make sure the pain doesn't get to the point that it's really bad.? Joshie gave me a sad look and answered, "My head always hurts.? The medicine doesn't make it go away anymore."? That hurt to hear.? I hugged Joshua tightly and told him I'm so sorry that his head never stops hurting. I've decided his pain tolerance level must be through the roof because how he continues to do *anything* with his head, back & legs hurting the way they do is beyond my ability to understand.? He's incredible.So... we aren't aiming for pain-free anymore, which makes me want to cry.? We will be thrilled if Joshua gets some pain-free times, but it hasn't happened for awhile now & from what Dr. T said today, we should not anticipate reaching that place anymore.? While I believe him, I can't give up hoping that maybe he's wrong.? It may be the absolute truth, but I'm not able to accept it yet.? There's only so much bad news I can handle in one week, ya know?? It's not like the hard stuff is coming only from the doctors, either.??? Joshua can't play the Wii anymore.? He can't coordinate his movements to play & attempting to do so exhausts him, so he no longer even tries.? Thankfully, he still enjoys playing games on the computer & on his iPad, so he spends time every day doing those activities.? He still plays with Legos and loves pop beads, with which he & his siblings make animals & other creations.? He isn't eating much anymore due to the difficulty he has with swallowing some foods & because food tends to make his tummy hurt (his digestive tract has slowed greatly, which makes food hang out in his stomach longer & that seems to cause him discomfort).? It's really sad because he *wants* to eat, but his body won't cooperate with letting him.? At this point, we're sticking with giving Joshua soft foods like pudding & Danimals drinkable yogurt, cheesecake (he eats the filling) and drinks that he enjoys.? I try to not think about how he can't eat his favorite foods anymore (pizza, chips) because that's a big loss & it hurts.To answer the question left in the guestbook, no, Charley is not at home (but yes, we're still married, if that was what you were asking ~ we celebrated our 21st anniversary last week, in fact).? He is working, on average, 68 hours per week. He took last August off, thanks to the generosity of many who made that possible (we remain very grateful for that huge gift to our family), but then returned to his job.? The kids & I are fortunate to have a father/husband who works so hard to take care of us.? We wish he didn't have to be gone so much, but unfortunately, that's the nature of his job & there isn't anything we can do about it at this time.? Thank you for the words of comfort & encouragement that have been shared in the guestbook.? It touches my heart that so many care about Joshua & my family.? Thank you for taking time out of your day to come here & listen to me ramble.? I truly appreciate the support so very much.? 31 people this Sign My Guestbook | Read Tributes Written July 9, 2012 8:49pm by Kate Parker I don't know how to put into words how I'm feeling.? "Sad" isn't strong enough, but "despairing" isn't quite right.? I'm not in despair because I know the One who is orchestrating every day & has Joshua and the rest of my family in His hands.? I'm still incredibly sad, though.? I am a "fixer" by nature & this is something I can't fix.? I can't make it better.? I look around at my children & see the pain in their eyes as they watch their baby brother slowly but inexorably move downhill toward an end that no one wants to think about.? After almost 21 years of cuddling, soothing, bandaging owies, helping to solve problems & doing everything I can to take care of my kids to the best of my ability, I find myself in a place where nothing I do seems to be enough.I have hit an emotional wall.? In addition to being physically tired, I'm mentally & emotionally maxed-out.? I'm struggling to push myself to read my Bible & talk to God.? I don't always succeed in doing it. I'm not mad at God ~ sincerely, I'm not ~ I'm just overwhelmingly sad about the circumstances of life right now, which makes doing anything fairly exhausting to me.? I think that if I can get some decent sleep, that will help.? Writing helps, too... just pouring out the stuff swirling in my head so I don't have to think about it so directly anymore.Joshua's oxycodone dose was increased 28% today.? From 150mg every 4 hours to 210mg.? His rescue doses were upped from 90mg every 2 hours, as needed, to 90mg - 210mg (we give whatever amount in that range we think is needed, based on the severity of Joshua's pain at the time we're giving the med).? His dosages of fentanyl, methadone & neurontin remain the same.? This new base dose is 21 times what an adult man would get.? Having to increase his pain meds makes me want to cry.? I never know if he'll tolerate the new dose well or if it will make him excessively sleepy.? I never know how the increase will affect his respiratory function.? Opioids/narcotics depress the central nervous system as a side effect, which means it makes a person breathe more slowly & their heart beats more slowly.? For a child with brain stem dysfunction who already breathes very slowly & whose heart beats slowly, increasing his opioid dose involves the risk that his central nervous system will be affected to the point that he stops breathing completely.? For a child whose resuscitation status is Do Not Resuscitate, ceasing to breathe as a side effect of medication needed to control pain would be the cause of death because medical personnel would not attempt to get him breathing again if he stops.? Knowing that, I always feel trepidation when given the order to increase Joshua's medication dosages, even when I know it's absolutely necessary & I was the person who called the palliative care physician & pediatrician to let them know of the need.? I don't want to be the one who gives Joshua a dose of pain medication that causes him to stop breathing.? I definitely don't want Megan or Adam to be the one to do it, either.? So... basically... I just don't want Joshua to stop breathing because of medication.? Whether that is an impossible dream, I don't know, but it's what my heart desires.? 'Course, I don't want him to stop breathing for *any* reason, but it doesn't seem that I get a vote for that.I keep telling myself everything isn't that bad & that I need to chill out, but it's not working so well right now. I'm not normally a "fall apart" kind of girl, but honestly, I feel like I'm facing a mountain range and I have no energy to get over any of the obstacles in my way. I know that being exhausted isn't helping, so I am going to enlist the help of my big kids to take over doing midnight meds for a couple of nights so that I can try to get a 5-6 hour block of sleep versus the 3.5 hours I typically get in-between waking to give meds.? Maybe that will help my perspective a little.? It would also help if the doctors could figure out what is wrong with Bethany without all of the hassles we're encountering along the way. I know this isn't her journal, but the challenges I am facing with her being ill contribute to my mental and emotional fatigue, so it bears mentioning.I'm to the point I just want Jesus to come back & rescue all of His believers from this fallen, broken world.? I don't want to have to walk the road of a parent whose child died. I don't want to endure that pain (call me 'chicken'; I don't care. It's true). I don't know how to get through THIS season of life, watching Joshua slowly decline, so I have no idea how I will survive the season of life after he's gone to heaven.? I mean, yes, I know I'll get through it day by day, by God's grace & leaning on Him, but I don't know how I will WANT to survive it.? I can't imagine life without Joshua in it.? I don't want to experience life without him.? I don't want my other children to lose a brother.? I want to spare them that & I know I can't.? All of it tears me up inside.I can't forget the things I've heard and seen.? All of it mixes with the reality of the here-and-now.? It's hard to see all of the "little things" that we all (my family) were thinking were caused by chiari or tethered cord.? It's even more difficult to remember over & over that we can't do anything about any of it anymore & why.? Not that surgery was a guarantee for improvement, but at least it held the HOPE of improvement.? Now, without that hope, every symptom is distressing to see.I'll continue to enjoy Joshua's awake times (he slept a bit over 19 hours today, waking at 7:15pm) and I'll thank God every day for giving us more time with him. I will smile & laugh at his antics and hug & kiss him as often as he will let me, but I'm not sure if this underlying sadness is ever going to go away.? The Bible says, "Hope deferred makes the heart sick."? (Proverbs 13:12)? I think maybe God forgot to add that hope completely taken away makes a heart break.? Based on what I am currently experiencing, I know it's true.?Written July 6, 2012 12:51am by Kate Parker I've been putting off updating here.? I'm generally a talkative person, but this time, I can't seem to find the words to explain anything.? Maybe it's because writing it all out makes it too real and right now, I just want to avoid thinking about it.? Maybe it's because this *isn't* a private journal and, as such, whatever I write will be read by some people who are not sensitive to how their words affect a person in my situation & my emotions are so raw right now that the very thought of negativity or unkind comments makes me want to close this browser window (yet again) & say 'forget it'.? Still, I know I need to update... I know people want to know what is going on with Joshua... I know the information swirling in my head is pivotal in Joshua's story & I need to write it here so I can come back & read it someday.? So I'll try.? I make no guarantees that the words that spill onto this page will be cohesive.? If I leave you with questions, you are welcome to leave a comment in the guestbook, asking them, and I will do a Q and A post at a later date with answers.? It would be nice if no one asked anything beginning with, "Have you thought about trying...." because honestly, ANYTHING that could be tried ~ anything realistically feasible ~ has been contemplated.? I guarantee there is nothing anyone could come up with that is a realistic possibility for Joshua that someone on his team of specialists or myself have not already thought of &/or tried already.? Aside from that, however, you can ask me whatever questions this post I'm currently writing leads you to ask. Okay... got that out of the way.... so I guess I should explain what is going on, huh?Joshua saw Dr. W, his neurosurgeon, on Tuesday.? I had been told to bring him up so we could schedule surgery.? As such, I had gone to Portland thinking we were going to schedule surgery.? Crazy, I know.? That isn't what happened, though.When we arrived at the hospital on Tuesday morning, just as I was pulling into the parking garage, Joshua calmly announced, "I've changed my mind.? I don't want Dr. W to fix my head or my back."? Megan & I asked, "What?" (I thought I must have misheard him) & he repeated that he'd changed his mind & he no longer wanted to have surgery to fix his head or his back.? I asked, "Why?" and Joshua replied, "I just changed my mind."? Megan thought maybe he was scared even though he didn't sound frightened, so she tried to reassure him by saying, "Joshie, Dr. W isn't going to fix it today.?? Today we are just talking with her, okay?"? He answered, "Okay, but I still don't want her to do surgery."? I'd parked the car by then, so I turned in my seat & looked at Joshua as I said, "Do you know what will happen if you don't have surgery?"? He nodded and answered, "I'll go to heaven sooner."? Then he added, "That's okay; I'll just go to heaven sooner."? I took a deep breath, then told him, "That's fine.? If you don't want surgery, you don't have to have it.? But we're here, we have an appointment, and we can't just not show up because Bethany is seeing Dr. W, too.? So let's go see Dr. W and just listen to what she has to say, okay?"? Joshua was fine with that idea, so after Bethany saw her rheumatologist & we'd popped in to see the hematologist-oncologist & confirm an appointment for that afternoon, we headed to Dr. W's office.? I had no idea that God had just given me a big 'ol clue about what was coming.? Dr. W came in with her assistant & we did Bethany's appointment first.? At the end, Dr. W & I went out of the exam room to look over Bethany's MRI together.? While we were out of Joshua's hearing range, Dr. W began discussing Joshua's current symptoms with me.? We talked about his increasing apnea & bradycardia & difficulty swallowing & increasing fatigue & balance difficulties & all the rest (see my previous two posts for the list of symptoms).? We looked over Joshua's most-recent MRIs of his head & back.? Then, before I could say anything, Dr. W stunned me into silence with the following announcements:"I can't go back in there again," she said."What?? Why not?" was what I wanted to know."The last time I was in there, I didn't think I was going to get out of his head alive.? There is scar tissue wrapped around his brain stem, adhered between his brain and brain stem, and adhered to the dura.? I've never seen anything like it before in my life.? I didn't know it was possible.? If I tried to go in there again, I know with 100% certainty he would stop breathing, and I really don't want to be directly responsible for his death.""WHY didn't you tell me this back in November?? Why haven't I heard about this before now?? You've never said anything about this!? Why not?"? My questions came in rapid-fire succession."I just wanted to get him past Christmas, Kate.? I never thought the day would come when I would need to go back in there again, but now that it's here, I can't do it. It would kill him."WHAM!!!!!? . Talk about getting hit out of left field!? I never saw that coming.I stood there in silence at first, unmoving & not knowing what to say.? I had thought we were there to schedule surgery to hopefully extend Joshua's life and instead I was being told that it's impossible to attempt it because to do so would, with absolute certainty, end his life in the operating room... and his neurosurgeon had known that she would never go back into his head again for this same procedure since 8 months previously, when she had been seriously concerned that she would not be able to get out of Joshua's head without his dying due to the severity of scar tissue encasing his brain stem, yet she hadn't told me any of that since she hadn't thought he'd live long enough for it to be necessary for me to know.Wow.I found my voice & asked, "What about his back?? Would detethering him help?"She answered, "From a tethered cord point of view, he looks really good."? I spluttered a bit and asked, "HOW can you think that?"? She gently replied, "Kate, his symptoms are not originating in his back.? They're central.? It's not tethered cord.? It's neurodegenerative decline."WHAM!!!!!? Again.The weakness, increasing muscle fatigue, toe-walking... I ascribed it all to tethered cord because it used to be the condition those symptoms pointed to.? Now, however, it points to his brain stem deteriorating.? To neurodegenerative decline.? Dr. W told me that when she was inside his head last November, his brain stem was already getting "mushy" (her term).? She had no doubt after examining Joshua that the losses we're seeing are not because he's horribly tethered... instead, it's all central nervous system losses.? Yes, he's tethered, but not to the degree that I thought he was.? Not to the degree that is causing the symptoms we're seeing.Hearing that hurt.? It was a literal pain in my chest that sucked the breath out of me momentarily.? I told Dr. W that I respected her decision, but I needed to understand why she could not detether Joshua.? I told her that from my perspective, it seemed like loosening his spinal cord from the scar tissue it was stuck to would remove the downward tugging of his brain stem when he moved.? She did not disagree with me, agreeing that we've done that before, but she straightforwardly informed me that the effort required to free up Joshua's spinal cord would wreak havoc with his brain stem as the movement of his spinal cord caused a "ripple effect" (for lack of better phrase) upward.? She said it would irritate his brain stem & yes, she could detether him, but what good would it be for Joshua to wind up dead or on a ventilator, paralyzed, from the surgery?? In other words, that procedure, too, is far too risky to attempt.? I assured her that I understood (and I did.? I do.) & thanked her for explaining it to me.? She nodded as she said, "I understand, Kate.? This isn't the first time we've talked.? I know why you asked."? I said, "Yeah, I'm going to have to live with this conversation in my head for the rest of my life."? She said, again, "Yeah, I know.? I understand."? And she did.? It's why she spent 1.5 hours talking to me after spending 30 minutes examining Joshua thoroughly.? She wanted to make sure I understood WHY we are done... WHY there is nothing more to do except manage Joshua's symptoms & pain and wait for him to stop breathing on his own. She wanted to make sure all of my questions were answered.? She wanted to make sure I knew she cared.? She invited me to come look at the intraoperative pictures she'd taken during Joshua's last chiari surgery in November.? I told her I'd seen them & reminded her that she'd given me the pictures.? She shook her head and said, "Not all of them."? Then she showed me photos of Joshua's brain stem surrounded by scar tissue.? I saw my son's brain stem adhered to his cerebellum by scar tissue ~ like an Oreo cookie, where the filling was scar tissue & the two sides of the cookie were the brain & brain stem. I saw another photo showing scar tissue stuck to the dura & the arachnoid layer of the dura, sucking those structures inward & giving them an abnormal shape.? I understood why trying to remove the scar tissue from Joshua's brain stem would be equivalent to trying to remove a piece of sticky tape from a piece of wet tissue paper without tearing the tissue.? It would be impossible.? I saw the pictures.? I know Dr. W was telling me the absolute truth and not copping out because she didn't want to try anymore, which is actually really reassuring.? I will never have to wonder about that down the road, when hindsight has me asking myself if there was anything that could have been done or anything we missed.? Those pictures were hard to look at, but I'm thankful they were shown to me.? Seeing the mess that is Joshua's brain stem cemented in my own mind the truth of Dr. W's words and the reality of my little boy's medical situation.? Yes, I knew she was being honest with me & I am fully aware of what is going on with Joshua, but remembering what I saw when I looked at the pictures makes it impossible for me to lie to myself and think that maybe it's not so bad or maybe Dr. W made a mistake.? I know that sounds crazy, but it's amazing the lies your brain will conjure up when you really want the truth to be something other than what it is.? Knowing what I saw & being reminded of those images makes it impossible for me to lie to myself.Dr. W told me she was sorry.? I told her, "It's okay; we both knew the day would come when you couldn't do anything more for Joshua. I just didn't know today was going to be that day."? I understood why she let me think we were going to schedule surgery... she had to get me there, in her office, to tell me in person.? She isn't the type of doctor to give heartbreaking news over the phone.? I think she said we could do more surgery (back in April) only because Joshua had looked her in the eye and told her that he wanted her to fix his back and his head. I don't think she was prepared, then, to have the conversation we had on Tuesday, so she put it off until she no longer could.? I was thankful that God had changed Joshua's mind about wanting surgery again.? It would have devastated me to have to tell him that Dr. W could not fix his head and back if he had still wanted her to do it.? I believe the Lord prepared Joshua's heart & that is why he quite suddenly changed his mind on the way to the hospital.? God knew what Dr. W was going to tell me and He ensured that Joshua did not have to hurt by being told "no" to an impossible request.? That was a blessing & I was thankful for it.? I wish God had changed MY mind ahead of time, too, but alas, that is not how it worked.Dr. W said she wants to do one more MRI of Joshua's brain, to confirm for herself and for me that there is nothing else that can be done.? She said that if there was a big chunk of scar tissue sitting at the back of Joshua's brain that she could easily reach in & remove without getting near his brain stem, she would do that for him.? I shook my head and told her, "You aren't going to find that."? Besides, what good would it really do when his brain stem is mushy & encased in scar tissue that is stuck to his brain & therefore is being squished in ways she can't fix?? She was throwing me a bone... trying to offer SOMETHING... I understood why & saw the offer for what it was, but know it's not something that is actually going to happen.After we were talked out, Dr. W stood and said, "Let's go before I change my mind."? I stood, too, as I replied, "You don't want to change your mind & I would not ask you to.? I would not want you to do something that you know, going in, would kill him."? Dr. W agreed, then added, "'Cuz you know I'd blame YOU!"? That made us both laugh & I told her, "Yeah, I know that's true!? You would!"? Megan chimed in, saying, "Yeah, but she also gives credit where it's due," and Dr. W quickly agreed, "Yes, I do!? Don't forget that!"? Then she reached over to hug me.? We went to the front desk, where Dr. W handed Lora the patient chart and she asked, "So... what surgery are we scheduling?"? Dr. W softly answered, "None."? As Lora's jaw dropped (literally) & she let out a surprised, "Ohhhhh," Dr. W told her, "I want you to order a brain MRI with CINE so we can confirm there is nothing else we can do."? Then she turned to me & we hugged again.? I called Joshua over from the prize box and told him we were leaving, so he should give Dr. W a hug & tell her goodbye.? For the first time ever, Joshie reached up and wrapped his arms around Dr. W's neck as she bent over to embrace him.? They hugged for about 10 seconds before Joshua let go and said in a deliberate & very final tone of voice, "Goodbye, Dr. W."? It wasn't a lighthearted, "see ya later!" type of farewell.? It was resolute... his tone of voice said, "I know this is it."? I choked back tears and Dr. W pivoted, walked to her office & shut the door.? I understood.? If I could have walked to a private room to cry, I would have, also.? Unfortunately, I still had to take Bethany to her appointment with the heme-onc, so I had to hold it together awhile longer.Megan & I cried on and off all the way home.? We also listened to Christian music and found the songs playing had a recurring theme of trusting God, surrendering to Him, loving Him and being refined through trials.? Totally coincidental, I'm sure (ha ha).? We prayed together as I drove, asking God to help us to glorify Him through this painful situation.? He impressed on my heart that my fighting for Joshua is over... that I have done all He asked me to do and now He will take care of the rest.You might think that would comfort me and give me peace, but it didn't.? It hurt.? Why?? Because it means I have to accept that we're really, truly DONE.? That aside from keeping Joshua comfortable, there's nothing more we can do.? The door to more surgery is closed, bolted, locked, welded shut.? There's nothing else.? The scar tissue will continue to build up, his brain stem will continue to deteriorate, his symptoms will get worse and he will die.? And there is nothing any human being can do to stop it from happening.? It makes me want to scream.? The desperate part of me doesn't want to believe that we can't figure out SOMETHING that would help.? The logical part of me that has researched every aspect of Joshua's conditions for years knows the desperate part of me will flail & scratch & claw around, looking for answers that will not be found, and eventually that part will give up & accept what the logical part of me already knows to be true.? The pain of knowing the truth is searing.? Trying to force myself to accept that yes, we really are at that point... that place that used to be a hypothetical & "oh yeah, it'll happen someday but someday is far away" dot on the horizon...it's brutally difficult.? Denial is a powerful force, people.? I am finding that my brain would LOVE to curl up with Denial & pretend that none of this is happening.? It is so much harder to stay grounded in reality right now since that's a much more-painful place to be.When I got home from Portland, I had to break the news about Joshua to Adam.? When I was done explaining everything, the tears were flowing freely and Joshua walked in the room, saw me & announced, "Mommy mommy mommy, I love my mommy!" as he came over to give me a hug.? He said, "Mommy, don't cry!"? I hugged him and asked through my tears, "Why shouldn't I cry?"? He smiled and said, "Because I'M here!"? That made me laugh & cry simultaneously.? He was right, though, and I realized the wisdom in his egocentric little boy words.? There will be plenty of time to cry when he's gone.? For now, he's still here, so I need to enjoy every moment rather than focus on what is coming down the pike.? With the pain of learning there is nothing else we can do but keep him comfortable for the remainder of his days (months?) fresh in my heart right now, though, that's harder to do than you might think it should be.It is not anticipated that Joshua will live to see 2013, now that surgery has been taken off the table, but the fact is that no one really KNOWS how much time he has simply because there is no other kid alive who has the same constellation of conditions, so there is no "road map" for anyone to follow. If Joshua's symptoms continue the way they've been, with increasing apnea & bradycardia, then it is not realistic to believe he'll live past the end of the year, but again, no one except God knows how much time we'll have with Joshua. From now on, we will treat symptoms as they evolve & use medication to keep his pain under control.? If it is possible, we will keep him at home to die versus having him in a hospital setting.? I don't yet know if he will be re-admitted to hospice, but in light of the lousy experience we had last year with the only hospice provider in our town, I am guessing our pediatrician will not want to go that route.? I don't know if he qualifies for home health nursing, but at this point, I don't want a stranger in my house providing any of Joshua's care.? That is what I do.? It is the only thing I can DO for him anymore... aside from being his Mommy... and I am not interested in relinquishing that job to anyone else right now.? Yes, we knew this day was coming, but like I told a friend, knowing a train is coming doesn't make the impact hurt any less when it hits.??? 38 people this Sign My Guestbook | Read Tributes Written June 25, 2012 6:49pm by Kate Parker With a week to go before we head up to Portland, I figure now is a good time for an update on how my little guy is doing.? As usual, he's doing well in some ways and not well in others.His pain is pretty well-controlled, but we invest more time each week in keeping it that way, so overall, it's getting worse (if that makes sense).? Also, he goes from his pain being mild to being in agony without stopping at "moderate" anymore.? What that looks like is he can be sitting at the computer playing a game and laughing one minute, then LITERALLY be sliding to the floor, wailing & holding his head the next minute, crying, "My head REALLY hurts!"? We jump to get his meds immediately & within 15-20 minutes, he is all right again, but the suddenness and severity of his pain is always a shock to both him & us because we really don't get any warning that it's coming anymore.He is sleeping a lot more.? It used to be that he slept extra long hours the night after we changed his fentanyl patches, but now he's sleeping long hours pretty much every night & into the afternoon/evening of the next day.? It's currently 5:32pm and he is not yet awake for the day (he went to sleep just after midnight).? His voice has gotten hoarse & he squeaks a lot when he talks.? He is stuttering a lot more when he speaks, too ~ like he is struggling to get the word he wants to say out of his mouth.? That's a chiari symptom.He toe-walks almost exclusively now.? That's a sign of tethered cord.He insists there is always something in his right eye.? He asks daily for someone to get "it" out of his eye.? There's never anything there.? I wonder if there's something neurological going on... maybe some deterioration or something that is causing a sensory misfiring. I honestly don't know.He has a very difficult time purposefully swallowing. He is pretty much only eating soft foods like pudding or ice cream now and drinking things like liquid yogurt or milk, If we need him to swallow on command, he has to concentrate & tip his head down toward his chest to help him accomplish the task.? This can be a sign of chiari.He can't be carried on our hip anymore because he can't comfortably spread his legs and lift them up (even with help).? His spinal cord is so tethered it won't allow him to move very freely anymore ~ he's very stiff through his torso & hips now.He has had further bowel & bladder changes, both of which go along with tethered cord.? His headaches are not only on the top of his head anymore.? Now he has them at the base of his skull, too.? That's definitely a chiari symptom.His energy level has decreased.? It's nothing specific... just an overall realization that he gets worn out faster than he did a month ago.On the "good" side of the equation, Joshua is still happy for most of his awake hours each day.? He enjoys playing games on the computer or the Wii and building legos with his siblings.? When he feels good, he likes to go with me on short outings.? Basically, when he is happy, he's the same Joshua he's been for the past year.? He just has more complications right now.? A good majority of those symptoms are associated with chiari & tethered cord, both of which are conditions that can be treated.? It is my hope & fervent prayer that doing surgery again will help Joshua to get back to the baseline we've had since December.? If it doesn't work, we'll just continue managing symptoms to the best of our ability, but I really do believe surgery will help him again.? Assuming Dr. W hasn't changed her mind about operating, we'll add Joshua to her surgery schedule for (probably) sometime in mid-to-late July.? I have to coordinate his surgeries with Bethany's (getting a port-a-cath placed & a bone marrow biopsy) and Hannah's (getting a new g-tube since she pulled out her mic-key button during naptime & the stoma closed before anyone realized what she'd done).? Ideally, I'd like to get the girls' procedures completed before Joshua goes into the hospital, but in the end, God's timing is perfect, so I'll go with however He works things out.21 people this Sign My Guestbook | Read Tributes Written June 25, 2012 4:27am by Kate Parker Joshua's heart rate has been running really low the past two nights, hanging out in the 30-50 beats per minute range, which has made for lots of alarms going off during the night. I keep lowering the parameters on his pulse ox, thinking I've got it low enough that it won't alarm, but the blaring "beep beep beep!" wakes me again & again.? I am not comfortable setting the alarm lower than 35 for his heart rate.? Really, the machine shouldn't need to be set so low, and if his heart is beating that slowly, I want to know. Still, it's unnerving to hear alarms so frequently at night.? It's been months since that's happened. His oxygen saturation level has been better than his heart rate, which is weird since oxygen usually dips before heart rate in kids, but he's had some big desats, too. The lowest he's hit was 75% and he dips into the 80's fairly regularly, too.? Last night, though, he had just 4 desats while having 4 times as many episodes of bradycardia.? It was really odd to see him satting at 98% while his heart rate was 40.? I am pretty sure it's caused by his brain stem being wonky, but still, it's weird to see.? At one point, I wondered if the pulse ox was picking up the signal properly, so I checked Joshua's pulse manually.? I was both relieved & concerned when I realized that the pulse ox readings were accurate & yes, Joshua's heart really was beating that slowly.When he's awake, he's fine.? Well, okay, I can't know for sure that he doesn't have episodes of apnea or bradycardia because I don't typically hook him up to his pulse ox when he's awake, but he SEEMS fine.? He plays & talks & as long as we keep on top of his meds & control his pain, he's happy. It's just when he sleeps that things are looking more shaky.? He sees his neurosurgeon in 8 days & we'll see what she thinks & where we'll go from here.? I've recently had a few friends express their disapproval of my intention to put Joshua through more surgery.? Apparently, my sharing that Joshua said he wants to go to heaven has led others to believe that this poor little boy is being forced to go on living in misery because his family refuses to give up & let him die.? That's completely untrue, of course, but I guess I shouldn't confuse the issue with facts when some people have got their minds made up.A few nights ago, Joshua had a headache when I was putting him to bed & he told Adam and me that he wanted to go to heaven now because he didn't want his head to hurt anymore.? I calmly told him, "Okay, you can go."? He paused a moment, grinned, then asked, "How do I get there?"? I told him, matter-of-factly, "You have to stop breathing and your heart has to stop beating."? He asked, "I have to die?"? I answered, "Yep.? And the instant you do, you'll be in heaven with Jesus & it will be wonderful."? Joshua thought about that for a minute before announcing, "Nah, I don't want to die yet!? Can I have some headache medicine?"? Adam gave it to him & that was the end of that conversation.On Friday evening, when Megan & I were alone with Joshua upstairs, I asked him, "You know how you sometimes say you want to go to heaven now?"? He nodded & told me, "Yes."? "Well," I told him, "I want you to know that if you want to go to heaven sooner, we don't have to do more surgery.? If we do surgery, you will probably live longer.? If we don't do surgery, you will go to heaven sooner.? I want to know what YOU want to do, Joshie."? He sat quietly on the bed, thinking.? Finally, he asked, "If I don't get my head and back fixed, I'll go to heaven sooner?"? I affirmed that yes, that is what would happen.? He thought some more, then told his sister and me, "I want to stay here longer.? I want my head to not hurt, but I don't want to go to heaven yet.? I want to have my head fixed."? Megan asked, "So you want Dr. W to do surgery again?"? Joshua answered, "Yes, I want her to fix my head."? So... to those who worry about Joshua's suffering being prolonged against his will, please relax.? First of all, he's not suffering these days because we have his pain under control.? Yes, he has times each day when his head hurts & we have to give extra medication, but the extra medicine is enough to knock down his pain & give him relief again.? He's generally happy & he is enjoying his life to the fullest extent he can. Second of all, Joshua is a participant in discussions that involve decisions that will directly affect him.? I explain the choices to him and I tell him what could happen as a result of each choice, and then, after I am sure he understands to the best of his ability, I find out what he wants to do. As much as I am able, I respect and honor his decisions. Everyone who is a part of his medical team does.To those who think I'm really making a bad decision regarding surgery, let me remind you of something. I've said it before & I'll say it again:? it's really easy to think you know what you'd do if Joshua were your child, but the absolute truth is that until you have been in a medical situation where there is no "guidebook" and no treatment plan to follow & therefore every decision is uncharted territory, you DON'T know what you would do.? Really.? You can think you do, but you're wrong.? It's easy to make hypothetical decisions when they don't directly affect you or your child in any way and/or to judge someone who is making choices that you don't think you would make in a similar situation.? I realize that.? I also recognize that people project their emotions & experiences onto a situation and that plays into their reactions.? Ultimately, though, I think it's really important to remember that there is no way you can possibly care more about Joshua than I do, there is no way you can hurt for him more than I do, and there is no way you can possibly know as much about what is going on with him as I do, so maybe the best thing to do is trust that I am doing my best for Joshua & that if I make a decision you don't agree with, that doesn't mean I'm doing the wrong thing &/or need to be corrected by you. It could mean that I know more about the situation & therefore can make a more-informed decision than you.? Also, anyone who knows me knows I don't make big decisions based on my emotions.? I am not going to say "yes" to surgery just because I don't want my child to die & surgery might prolong his life.? I am not going to say "not" to surgery just because the thought of putting him through another operation & the recovery afterward makes me feel sick inside and I don't really want to be separated from my other children for a month or longer.? It isn't about me.? It never has been.? And I don't make medical decisions for ANY of my children based on my emotional response because I don't believe I'd make wise choices if I did.? So you can rest in knowing that big medical decisions get debated & discussed with Joshua's doctors, with Charley, with a few close friends who will pray over a situation & then bring their thoughts to the table, and with Joshua, himself.? The pros & cons are weighed & then a decision is made.? I shouldn't have to explain all of that in a journal entry, but I want people reading this to understand because some of you are very concerned that Joshua isn't having good decisions made on his behalf & I want to assure you that yes, actually, he is. Anyway... bottom line is this: if you disagree with the decision of? Joshua having more surgery, that's unfortunate, but please keep it to yourself.? Or go ahead and tell everyone you know what an idiot you think I am, but don't tell me.? I don't want to hear it. Ultimately, at the end of the day, the only people who have to live with the decisions made regarding Joshua's treatment are his doctors, my husband, my other children, & myself... not you.? As such, we will make decisions that allow us to do that.I appreciate the support that people offer.? I am SO grateful for the prayers and kind words offered up by so many who read both Joshua & Bethany's caringbridge journals.? I know there's always going to be bad that mixes in with the good and that's just what happens when a person chooses to share aspects of their life on a public site, but ya know, as things get increasingly challenging with Joshua (and Bethany), I need support & encouragement more than ever.? I'm not telling you that you can't have a differing opinion from me.? You totally can!? I am, however, asking that you consider whether your words ~ be they spoken or written ~ will help or hurt, and if they aren't going to help, then perhaps you should keep them to yourself.? Taking care of two medically-fragile children is hard enough without having to deal with well-meaning but hurtful comments on top of it.Written June 17, 2012 6:05pm by Kate Parker Joshie is about the same.? Good days are good & bad days are bad.? He's sleeping more, but I guess that's to be expected considering how much oxycodone he's getting these days.? I am currently sitting in a hospital room with Bethany.? I called home a few minutes ago to inquire how my little boy is and Adam told me Joshua had woken at 11:30am complaining of headache & he went back to sleep at 2:30pm.? He generally sleeps more the day after we change his fentanyl patches & we changed them last night, so I was surprised to hear that he woke up before noon.? As such, I wasn't surprised to hear that he had fallen back to sleep so soon. Still, he's had several days of sleeping 19-21 hours this past week, which makes me sad.In other news, I finally updated Bethany's caringbridge page.? She's turning out to be as medically complicated as Joshua, which is tough.? Okay, "tough" is really not the right word, but in the interest of not wanting to get emotional right now, I'll stick with that adjective.? Her link is at for those who want to keep up on what's going on with my Bethiebean.My oldest daughter, Megan, will stay with Bethany at the hospital tonight while I go home to be with my other kids and then I'll come back tomorrow.? It's a blessing to have two adult-aged kids who are happy to help out when life gets complicated. 8 people this Sign My Guestbook | Read Tributes Written June 14, 2012 1:49am by Kate Parker Apnea & bradycardia started back up in earnest two days ago (the night of the 11th, to be exact).? Joshua regularly desats to the mid-70% for oxygen and his heartrate drops into the 40's.? He's having more suboccipital (base of the skull) headaches now, too.? Hello, Chiari.? We've missed you.? NOT!!!? We've got his pain under control for the most part, though it's requiring a lot of rescue doses to do so.I'm not shocked by the symptoms.? Not anymore.? They started & my very first thought was, "Oh, I guess he's got enough scar tissue in there now to be causing trouble. Good thing we're seeing Dr. W in a few weeks."I'm not nonchalant about this. If I allow myself to think about it, I feel nauseous.? I just don't have the ability to dwell endlessly on what's happening with Joshua because Bethany is also quite ill & in the past few days, her specialists have put their heads together & come up with some unpleasant conclusions.? I need to update her site, but haven't figured out how to explain everything yet.? There is no way to put it in an ultra-condensed nutshell, but suffice to say that we spent 5 hours at the hospital today so Bethany could have blood tests for "cancer markers", an abdominal ultrasound to evaluate for either malignancy or other abnormality that might explain her pain there, & an IV infusion of methylprednisolone (steroids) because after just 2 weeks off steroids, her systemic arthritis is flaring again & they have to knock her immune system back down.? I was told yesterday that her disease is severe and out of control, which is not what I wanted to hear with regards to a child who needs open-heart surgery & tethered cord surgery but cannot have either procedure until she has been off steroids (and remained stable) for 2 months.? I was also told she is high-risk for leukemia after the hematology oncologist (heme-onc) evaluated all of her blood tests from the past 18 months.? Oh, and just before leaving the hospital this afternoon, I was handed a copy of some of the lab results that had come back already (they were all 'stat' labs) & one of the cancer marker tests was abnormally high (as in the normal range is 90-210 mg/dl and Bethany's result was 622 mg/dl).? So yeah.... my concern for Joshua is mixed with my concern for Bethany.? Having two medically-fragile children is tough on a good day.? It's brutal when they are struggling simultaneously with vastly different symptoms & needs.? I don't have the time to cry, nor do I have the luxury of falling apart right now.? I'll schedule my breakdown for a later date.? <weak grin>? Seriously though, I'm getting through by the grace of God & the strength of Christ as He enables me to "do the next thing", whatever that may be.? I am strangely calm about all of this, which I have to attribute to the peace that passes understanding.? Either that or I am incredibly emotionally numb.? Calling it "peace" sounds so much better though, don't you think?? :D? I know me, though, and once I know what we're facing for Bethany & Joshua, I will cope better. I just really dislike being in limbo where we (doctors & myself) KNOW there's a problem, but we don't yet know what it is and/or what we're doing to do about it.? 16 people this Sign My Guestbook | Read Tributes Written June 11, 2012 4:05pm by Kate Parker Heard back from neurosurgeon, who wants to see Joshua & talk about scheduling surgery.? She will be out of the office for two weeks beginning tomorrow, so the first appointment slot available is June 26th.? I asked if I could schedule Joshua for the same day as Bethany a week later so that I am making just one trip & was told that wouldn't be a problem, so Joshua will see Dr. W on July 3rd.? Bethany will be seeing 4 of her specialists over 2 days & Joshua will probably also see his palliative care doctor while we're up there.? It'll be a busy two days for sure, but hopefully we'll come home with definitive plans for both kids.I was asked (in the guestbook comments) what the disadvantages of doing surgery are.? Honestly, as far as I know, there are only 2:? he could die (not just from anesthesia risk, which I *think* is still pretty low, but from the risk of his brain stem not tolerating being messed with during surgery as his spinal cord is manipulated & thus causing Joshua to stop breathing or his heart to stop beating) or he could have a really difficult recovery & then come home worse-off than prior to surgery.? From my perspective (and that of his neurosurgeon), those are not piddly disadvantages and that is why we are being very careful to assess when is the right time to attempt surgery.? We know surgery is the only option available for possibly improving Joshua's quality of life for any length of time and that without it, all we can do is manage symptoms until the end of his days on earth.? We know that eventually, surgery will not be an appropriate option to pursue. For now, everyone on Joshua's team agrees that what he stands to gain from surgery makes the risks worth taking.? It just becomes a matter of when to do it. We all agreed a couple of months ago (when Joshua had MRIs) that we should wait until his quality of life declined to the point that he was not able to enjoy much of his awake time.? On days like yesterday, I am convinced we're at that point.? On a day like today, where he's not needing as much breakthrough medication (still more than his palliative care doctor wants him needing, though) and he's not crying & miserable, I am more inclined to wait a little longer.? It's a tightrope of sorts that we (Joshua's medical team & I) are balancing on as we try to give Joshie the best quality of life for the longest amount of time that we possibly can.? In 3 weeks, we'll reevaluate & go from there.Written June 11, 2012 4:05pm by Kate Parker Heard back from neurosurgeon, who wants to see Joshua & talk about scheduling surgery.? She will be out of the office for two weeks beginning tomorrow, so the first appointment slot available is June 26th.? I asked if I could schedule Joshua for the same day as Bethany a week later so that I am making just one trip & was told that wouldn't be a problem, so Joshua will see Dr. W on July 3rd.? Bethany will be seeing 4 of her specialists over 2 days & Joshua will probably also see his palliative care doctor while we're up there.? It'll be a busy two days for sure, but hopefully we'll come home with definitive plans for both kids.I was asked (in the guestbook comments) what the disadvantages of doing surgery are.? Honestly, as far as I know, there are only 2:? he could die (not just from anesthesia risk, which I *think* is still pretty low, but from the risk of his brain stem not tolerating being messed with during surgery as his spinal cord is manipulated & thus causing Joshua to stop breathing or his heart to stop beating) or he could have a really difficult recovery & then come home worse-off than prior to surgery.? From my perspective (and that of his neurosurgeon), those are not piddly disadvantages and that is why we are being very careful to assess when is the right time to attempt surgery.? We know surgery is the only option available for possibly improving Joshua's quality of life for any length of time and that without it, all we can do is manage symptoms until the end of his days on earth.? We know that eventually, surgery will not be an appropriate option to pursue. For now, everyone on Joshua's team agrees that what he stands to gain from surgery makes the risks worth taking.? It just becomes a matter of when to do it. We all agreed a couple of months ago (when Joshua had MRIs) that we should wait until his quality of life declined to the point that he was not able to enjoy much of his awake time.? On days like yesterday, I am convinced we're at that point.? On a day like today, where he's not needing as much breakthrough medication (still more than his palliative care doctor wants him needing, though) and he's not crying & miserable, I am more inclined to wait a little longer.? It's a tightrope of sorts that we (Joshua's medical team & I) are balancing on as we try to give Joshie the best quality of life for the longest amount of time that we possibly can.? In 3 weeks, we'll reevaluate & go from there.11 people this Sign My Guestbook | Read Tributes Written June 11, 2012 1:15am by Kate Parker Well, that didn't last long. Five days. Five days of feeling really good before we were back to Joshua complaining of severe head pain & we were scrambling to get him feeling okay again.? The past 5 days have been really wonderful.? As my friend, Basia, commented in the guestbook, Joshua was feeling great & was able to play & enjoy being a little boy again.? When his friends came over, he joined in the fun, even venturing out into the backyard to be part of the action.? He was even able to "run" in his funny little way, which was adorable to watch & would bring a smile to the face of anyone who saw him.? He was requiring just 2-3 extra doses of oxycodone each day in addition to his regular meds to keep him pain-free.? It was blissful.I think that is why I feel so shell-shocked tonight. I did not think we'd be back to his head hurting & him whining as he laid in my lap, wriggling around as he tried to find a comfortable position, so soon.? With the adjustments we made in his meds, I truly believed he'd be "good to go" for awhile.? Maybe a month.? Maybe even a little more, or perhaps a little less, but definitely not just 5 days.Five days.? Why only five days???Where do we go from here?? I don't really know yet.? I still haven't heard from our neurosurgeon or her P.A.? I put calls in on May 31st & June 5th.? I know they had a brutal week filled with 7 brain tumors in 7 days, so I extended grace & determined to wait patiently for a return call.? It'll come; it always does.? Dr. W is out of the office for the next two weeks, so I anticipate hearing from her P.A. sometime this week.? If I haven't heard from her by Tuesday afternoon, I'll call again.? I need to know what they think of this situation & what they think we ought to do.You want my opinion?? I think we need Dr. W to clean out Joshua's back & head.? I think he needs to be detethered & decompressed.? I think he's reached the point where his spinal cord is so stuck in scar tissue that it's stretching & pulling his brain stem downward.? I think there's going to be no end to his increasing pain until the tension is removed from his spinal cord & the pressure on his brain is reduced again.? Hopefully I'll hear from Jenny soon so I can compare my opinion against Dr. W's & hers.? There has to be *something* we can do to give Joshua more than 5 good days at a stretch.? I pretty much am not ready to believe anything else, so if you think I'm living in la-la-land, do me a large favor & don't tell me.? If it turns out there's nothing we can do, I'll find that out soon enough.? For now, I'd prefer to believe that there's still options out there & it's just a matter of deciding with Joshua's specialists which one(s) we should pursue.9 people this Sign My Guestbook | Read Tributes Written June 6, 2012 12:08am by Kate Parker After almost doubling his oxycodone dosage & actually doubling his methadone dosage (and keeping his fentanyl dosage the same), I'm happy to share that Joshua had a really good day.? He's needed only a few rescue doses of oxycodone today & was able to play with his friend this evening without any pain.? *big sigh of relief*I'm not celebrating quite yet, but give me a couple more days like today & then I definitely will be.? :)Written June 3, 2012 2:34pm by Kate Parker The 150mg scheduled doses of oxycodone aren't cutting it. It HELPS, but it's not enough. About 20 minutes after getting a 150mg dose, Joshua is saying his head still hurts very badly, so he gets another 90mg & that makes things "mostly better" (his words), but then he has to wait 2 hours before he can get anything else and sometimes that's okay, but other times, not so much. I think we'll definitely have to go up on methadone again. *sigh*? I've been trying to figure out what happened while we were in Portland to suddenly jack up Joshua's pain level.? Maybe he grew, which stretched his spinal cord (that is stuck in mounds of scar tissue & therefore can't move freely) more.? Maybe the degree that his brain stem is being tugged downward by his tethered cord increased just enough to cause the pain explosion.? Or maybe the amount of scar tissue accumulating in the back of his skull increased enough to be obnoxious to him.? I don't know.? I won't know until the day comes where Dr. W opens up Joshua's head and/or back & takes pictures with her intraoperative camera to show me what's going on inside my child's body.? For now, all I can do is try to manage symptoms, which is proving to be a bit more complicated than usual.? And that, in turn, is frustrating & disappointing & more than a little discouraging. I am hopeful that increasing his methadone, which I'll do after getting permission from the pediatrician, will work (I know my request will be approved since Dr. T had given recommendations to increase the methadone if the increase in oxycodone wasn't enough). Something has to help eventually, right?I had someone ask (very kindly) if I would explain why Joshua's condition is considered terminal.? She has been reading his journal for awhile, but still doesn't understand, exactly, why he is going to die young.? It made me think that if this sweet lady has questions, there are probably others who do, as well, so I'll try to explain what's going on with Joshua in a simplified manner, not to insult anyone's intelligence, but to enhance understanding.? Joshua has a chromosome abnormality that causes his brain stem to not function properly.? The brain stem is what makes a person breathe, their heart beat, controls their body temperature and other involuntary things in the body (called autonomic responses).? Every signal that gets sent out of the brain to the body (like "pick up that fork" or "scratch your nose" or "wiggle your left foot") AND every signal that gets sent to the brain from the body (like "this tastes sour" or "the stove is hot" or "dinner smells good") goes through the brain stem.? When the brain stem is not working properly, signals don't always get through, or messages get mixed up, or sometimes signals don't get sent out at all.? When the lungs don't get the signal to inhale or the heart does not get a signal to beat properly, that is life-threatening.? Joshua's repeated episodes of apnea (where he temporarily stops breathing) and bradycardia (where his heart beats too slowly) have been caused by his brain stem not functioning the way it should.? Because of his chromosome abnormality, his brain stem could stop working at any time, which would result in his death.Joshua ALSO has a connective tissue disorder that causes him to make too much scar tissue inside his body when he has surgery (it also makes him more flexible than the average person).? This would not be a big deal for most people since most people do not have a lot of surgery in their lifetime.? Joshua, however, was born with spina bifida, which meant he had a big surgery on his back when he was just a few days old.? His body made a lot of scar tissue after that surgery, which stuck to his spinal cord and to the bones of his spine.? Since the spinal cord is supposed to float freely within the spinal canal, having his spinal cord stuck to scar tissue meant that as Joshua grew, the spinal cord got stretched.? Stretching a spinal cord results in nerve damage and pain as the nerves get stretched.? If the spinal cord does not get unstuck quickly enough through surgery, allowing the nerves to resume their proper shape & position, the nerve damage becomes permanent.? The nerve damage is primarily in the legs, feet, bladder and bowel.? Joshua was born with completely normal sensation and function in his entire body.? After years of the nerves of his spinal cord getting stretched, Joshua now has very little sensation in his legs and feet, and his bladder & bowel do not work the way they should.? That damage is permanent.? It is why he uses a wheelchair whenever he leaves the house and why he could never be potty-trained like a normal kid.Joshua ALSO has a chiari malformation (type 1).? This means that the bottom part of his brain has gotten squeezed out of his skull and hangs in the uppermost part of his spinal canal.? Joshua's chiari was severe enough that it blocked the flow of fluid around his brain.? That caused a lot of pain and pressure got built up in his head, so he had to have his first brain surgery when he was 13 months old.? After his first back surgery, Joshua's body made way too much scar tissue because of his connective tissue disorder.? That resulted in his spinal cord getting stuck to scar tissue, which did not let it move freely and caused pain & nerve damage as it got stretched when Joshua grew, and that resulted in Joshua needing another surgery to remove the scar tissue so that his spinal cord could move again. After Joshua's first brain surgery, his body made way too much scar tissue because of his connective tissue disorder. That resulted in the bottom part of his brain (his cerebellum) getting shoved up against his brain stem by scar tissue pushing against his brain.? That, in turn, blocked the flow of fluid in his brain once again, which caused pain and pressure build-up.? That meant Joshua had to have another brain surgery to remove the scar tissue and get his cerebellum moved away from his brain stem.After a few years of this cycle (multiple surgeries), Joshua's brain stem had been squished too many times and we started seeing signs that it was not working properly.? It was not working properly because of his chromosome abnormality, which was officially diagnosed on March 25, 2011.? Joshua's chromosome abnormality should have killed him by the time he was around 1 year old (all literature on this particular chromosome abnormality shows kids not living much longer than 1 year of age).? BECAUSE he also has chiari and spina bifida and a connective tissue disorder, he got surgery that other kids with this chromosome abnormality never have.? It has been the repeated surgeries that Joshua has had that have enabled him to live as long as he has, but in the end, his brain stem not working properly will kill him.Joshua's geneticist gave me an analogy the day he had to tell me that Joshua had a terminal condition.? It helped me to understand and I think I've shared it before, but I will share it once more because it might help those of you who "get" word pictures better than straight explanations.? What Dr. A told me is this:? If a house has a cracked foundation, many cracks and fissures will appear in the house, itself.? A person can repair the cracks and fissures in the house, but ultimately, the house can never be fixed because the foundation it is built on is defective.? Joshua's foundation is defective.? His house has many cracks and fissures (chiari, connective tissue disorder, spina bifida, tethered cord).? We can do surgery over & over, but we will never fix Joshua because the underlying chromosome abnormality can not be repaired. THAT is why we have watched Joshua decline, slowly, the entire course of his lifetime.? When Joshua began having serious problems caused by his brain stem not working properly (breathing, heart rate), we realized his condition was worsening.? Last July, his neurosurgeon had said there was nothing more she could do.? She did not think more surgery could help Joshua.? When she made that decision, Joshua's medical team decided the best option was to move Joshua to hospice care.? No one believed he would live to see Christmas.? Without any more surgery to remove the build-up of scar tissue in his head, he would have died by the end of 2011, and in fact, he was worsening substantially as the weeks went by.? But then, at the end of October, when Joshua begged Dr. W to do something to get rid of the "ball" pain he was feeling in his head, she changed her mind about not doing more surgery and told me to bring Joshua up to Portland, saying that she could not stop him from dying, but he did not have to die in horrible pain.? Joshua had 3 brain surgeries during the first two weeks of November and spent the month in the hospital before coming home, which has allowed us to have 7 more months (and counting) with Joshua.? This is time that NO ONE thought he would have, and if he had not had the surgeries in November, he would not still be alive.? We know that with 100% certainty.Joshua will have increasing pain caused by his brain stem deteriorating ~ it is getting folded as time goes on ~ and that pain will be made worse as his spinal cord continues to be stretched and tugs his brain stem downward and as the scar tissue in his brain accumulates and pushes his cerebellum against his brain stem.? If Dr. W does not do more surgery, Joshua will die when his brain stem stops working & that would be expected to occur sooner rather than later because of the increasing pressure against his brain stem and its not working correctly. If Dr. W does do more surgery and Joshua survives & recovers, we will hopefully get more good time with him like the months we have had since November.? It may be asked why we cannot continue to do surgeries and thus keep Joshua alive for years and years.? I have asked the same question and I was told that because Joshua continues to decline in-between surgeries (losing skills and muscle function and the like), eventually he will get to a point where surgery will not be an option anymore.? His brain stem will continue to deteriorate, regardless of how many chiari or tethered cord surgeries we do, so we (his neurosurgeon, pediatrician & I) are walking a fine line in trying to make sure that we do not push surgery if it is not going to benefit Joshua in any way.? Also, his need for increasing amounts of pain medication could eventually lead to him having breathing problems as a side effect of the medication (narcotics/opioids can make a person stop breathing).? It could make him sleep around the clock and, if his dosages increase faster than his tolerance does, he could eventually die from side effects of the medication necessary to control his pain.? So... either way, Joshua can't have a normal lifespan.? It is just not in God's plan for him.8 people this Sign My Guestbook | Read Tributes Written June 2, 2012 1:51pm by Kate Parker Joshie saw his pediatrician yesterday.? He's 49.6 inches tall & 58 pounds.? :)Dr. S called Dr. T (palliative care) & put the call on speaker phone so I could listen in.? After reviewing the amount of oxycodone Joshua has been getting, Dr. T increased his scheduled dose from 90mg to 150mg every 4 hours.? We're keeping rescue doses at 60-90mg, every 2 hours as needed for breakthrough pain.? We also received permission to increase Joshua's methadone to 10mg twice a day (he will still get 25mg at midnight ~ we change just the daytime doses), but we aren't doing it unless the increase in oxycodone isn't enough.Joshua received the increased dose at 8pm last night & went 4 hours without needing a rescue dose, so I have high hopes that this huge increase is going to be all he needs to keep things "good" for awhile longer.? As much as I would like him to have his spinal cord detethered & have the scar tissue cleaned out of his head, I'm not in any rush to do surgery until we're at the point where Joshua's quality of life is lousy & we can't improve it with medication.? Last night, we had friends over for dinner & Joshua was able to play with his friend, Ethan, & have fun without crying because his head hurt.? It brought me a lot of joy to watch the boys together, especially after the past few days of Joshua being so utterly miserable.I haven't yet heard from Dr. W (neurosurgeon), so I don't know what her thoughts are on this topic, but if Joshua continues to be comfortable on the increased dose of oxycodone, I will send her some video clips showing how he is able to play & enjoy himself (ie: has quality of life) and I suspect that will assure her that we can continue to wait before we move to do anything surgically.I'm feeling cautiously optimistic today as I wait for Joshua to wake up for the day & can assess how he is doing. For him to have gone 4 hours last night without the horrible pain he's been experiencing was such a relief (for him AND our family) & I am SO hoping that we're now on track to have more happy times again.? 20 people this Sign My Guestbook | Read Tributes Written May 31, 2012 2:50pm by Kate Parker Late last night was awful.? Joshua was hurting so badly that he could not stop crying (that, in & of itself, is tremendously disturbing because he doesn't cry in pain very often, so we know it's REALLY severe when he does) and he said he wanted to go to heaven right now.? Adam, Megan and I were with him as he folded his little hands & prayed that Jesus would let him go to heaven right now.? I gave him another 90mg of oxycodone, some Benedryl to counteract itching, and then Adam, Megan & I sang to Joshua for awhile.? Before he went to sleep, he said he didn't want to go heaven right now, but he wanted his head to not hurt.? He told us things he still wants to do before he goes to heaven.? Then he went to sleep.For the first night in a couple of weeks, he had absolutely no apnea.? His oxygen saturation level stayed above 90% all night long.? He's still sleeping right now, so I can't assess how he's feeling today.I hesitated sharing that story about Joshua praying to go to heaven because I know there will be people who say, "See?? He is done fighting this.? Stop making him hang on.? Let him go."? Yes, people send emails saying these things.? I understand that their perspective comes from not wanting to hear about Joshua continuing to hurt, but I think it's really important to realize that even if I said, "Okay, Joshua, you can go," it's not like he would suddenly stop breathing & die. I have zero control over when he dies.? While he's still living, I have to do what I can to help him stay comfortable.? Last night, he wasn't dying.? His heart was beating strongly, his breathing was normal.? His head hurt so much he wished he could go to heaven so that he wouldn't hurt anymore, but the pain, in & of itself, was not going to kill him.? Also important to remember is that when Joshua is not hurting, he has many things he wants to do.? He is not laying on a couch, suffering, for 24 hours every day while we, his family, refuse to medicate him to a level that would remove his pain & would hasten his death.? That is NOT the reality here.? When Joshua's quality of life has diminished & he is tired of fighting, then how we approach his care will be different.? We are not at that point yet, however, so we will continue trying to help him achieve pain-free status so that he can continue to enjoy his life to the fullest extent possible.With that goal in mind, I called Dr. T, (palliative care doc) & he said that before he can make any further medication adjustments, he wants neurosurgery to weigh in. He said that if Dr. W says this is not something she wants to address surgically, then we will need to re-evaluate things & change what we're doing for Joshua. Dr. T said if that's the case (if Dr. W doesn't want to do surgery yet), then he will want Joshua to see the neurologist & the pain management doctor so they can also weigh in with their opinions before he gives the final say on what we are going to do. He said that with Joshua being a mystery wrapped up in an enigma surrounded by a puzzle (compounded by him being the only child in the United States with this condition), there is no one who knows for sure what we should be doing. As such, making the best possible decisions in a no-win situation are getting increasingly more difficult. That's really not what I wanted to hear, though I appreciated his honesty. I called Dr. W's office & left a voicemail for Jenny, her P.A., telling her what Dr. T said & asking her to please call me. Joshua goes to see Dr. S (his pediatrician) tomorrow. She will be calling Dr. T (speakerphone conversation in her office so I can be part of it) & I am praying I'll have heard from Dr. W prior to the appointment so that I can let him know what she wants to do. I just want him to feel better... to get his pain controlled so we can continue to spend time with him that is fun & enjoyable for him. He doesn't seem like he could die any time soon, but I can't honestly say I know what that will look like.? I guess I have always assumed Joshua's apnea & bradycardia would get a lot worse and that would give us a "heads up" that things were getting to the critical point.? That's not happening right now, though (and no one knows why since that is what we've seen occur since January, 2011); instead, increasing pain mixed with decreasing overall function is what is occurring.? Whether or not this is the "typical" thing to occur at this stage of the game with Joshua's chromosome abnormality is unknown, so we don't really have any idea what to expect.? That contributes to the difficulty everyone on Joshua's medical team has with making treatment decisions.? At this point, though, we're all still on the same page & have the same goal:? to maximize Joshua's quality of life for as long as possible.? As such, I am hopeful that tomorrow's appointment with Dr. S & the phone conversations with Dr. W & Dr. T will yield a plan that will prove to be a good one for my little man.P.S.? To those who would want to email me after reading this journal entry to tell me how selfish I am to not "let Joshua go in peace", please don't.? You have never been in this position with one of your children (if you even have children) and, because of that, you honestly have no idea what you would or would not do if you were in my shoes.? No one likes to hear about a child suffering with as much pain as Joshua experiences.? I understand that.? Believe me, watching a child suffer is a lot harder than just hearing about it.? But you are not here, living this reality, so I ask that you would please try to trust that I am making the best decisions for Joshua that I possibly can, even if they aren't the ones you think you would make for your child.? Prayerfully, you will never have the opportunity to see how you would actually behave in the same situation & to learn firsthand how difficult it sometimes is to explain in a journal entry all of the nuances that come into consideration when major decisions for your child's medical care are being made.? To those who offer unwavering support & encouragement, regardless of what your personal feelings are on the topic (ie: if you think you'd do things differently), thank you.? There are days when the comments here help me to keep going & give me comfort in knowing that so many others care about my little boy.Written May 31, 2012 1:51am by Kate Parker We have lost the ability to keep Joshua pain-free.... ever.... despite increasing his methadone dose again & increasing the amount of oxycodone he gets daily.? He's getting huge amounts of oxy (upwards of 300mg every 2 hours), yet he still hurts a lot.? He's actually sleeping LESS (down from averaging 18 hours a day to about 12).? I know that sounds like a good thing, but the reason he's not sleeping as much is because his head hurts so severely, it wakes him, and that is not a good thing because he registers more pain when he's tired (you understand the vicious cycle here?) .? He's also experiencing intense itching as a side effect of the opioids.? That's a common side effect, but not one he's ever had.? It's extremely annoying to him, but Benedryl helps, so he's now getting that around the clock.? I'll be taking Joshua to the pediatrician's on Friday.? She will be conferencing with his palliative care doctor to determine what we can do to get Joshie's pain back under control again.? As of right now, I have no idea what the plan will be.? Maybe Dr. T will want to jack up the methadone doses, or maybe he'll tell us to crank up the oxycodone.? Maybe it's time to increase Joshua's fentanyl patch dose.? Or maybe he'll tell me we need to change some of the meds completely, which would necessitate a hospitalization in Portland to wean him off old meds while titrating new ones to therapeutic levels.? I honestly don't know what Dr. T is going to say.? As long as he has some idea of something to try, however, I'm listening.2 people this Sign My Guestbook | Read Tributes Written May 27, 2012 4:27pm by Kate Parker We got home without incident & life has continued on as usual.? In typical fashion, Joshua is pretty stable while Bethany struggles, but I'm thankful that they aren't both having serious problems simultaneously.? Having been through that once before, I'm in no rush to to do it again.I want to put an album together of pictures from our trip to Portland, but I haven't yet found the uninterrupted time to do it.? Even now, I have an adorable 2 year old climbing on me as I attempt to type.? :)? Eventually, though, I should be able to get it done & then I'll share with you all.? For now, you can go to the CCA's Community Hero page on their site to read about all of the 2012 Heroes.? Joshua is about 2/3 down the page.? Now that I've got some breathing room with Joshua, I have found myself feeling sad at times for no real discernible reason. Sometimes it's easier to deal with life when I don't have a lot of downtime to really THINK about anything other than getting through the day.? When there are stable times with no crisis happening, all the things I don't want to deal with but now have no excuse not to come swimming to the surface & it is really exhausting & I'm not really sure why that is.Have you ever wanted to hole up by yourself, away from kids, so you could allow yourself the luxury of not having to deal with life for awhile?? That's how I feel these days.? It's probably not the healthiest desire in the world, but that doesn't really change anything. Most of the time, I love being a mom to 9 kids & I am happy doing my multifaceted job.? There are times, however, when trying to balance the needs of my 7 healthy kids while taking care of their 2 medically-fragile siblings is overwhelming.? When I am feeling overloaded, all that I have to do (mostly by myself because my husband works insanely-long hours & leaves the medical stuff, homeschooling & management of the house to me) seems crushingly impossible. Sometimes I feel like I'm doing okay.? Other times, like now, I am fully aware of how many things are slipping through the cracks & it leaves me feeling like an utter failure.? Then I want to give up & run away for awhile. I know I can do all things with Christ, Who strengthens me (Philippians 4:13), but sometimes that head knowledge doesn't quite penetrate to my heart.? Sometimes I flat-out suck at turning to God when things are hard & I'm sure that contributes to my feeling lousy, too.? I wish things were different. I wish Joshua was healthy & that I was like the majority of people who never have to think about hospitals & surgeries & chronic illness & the death of their child. I wish that I could do things like take a trip to the beach with a friend to relax & recharge. I don't want to leave Joshua right now & I wouldn't (and no, I don't resent him for needing me), but I do wish life's circumstances would allow for me to get away when the opportunity to do so presents itself.I'll get over my pity-party.? I know that's what this is and I know it's not pretty.? You know what, though?? It happens & I can admit it.? I don't believe there is any mother out there who has cared 24/7 for a chronically-ill child and NOT felt sad at times & wished their life were different. Sometimes my emotions that go along with this journey are ugly.? I refuse to pretend otherwise.? I'd like to be seen as a strong, faithful Christian who embodies the traits of a Proverbs 31 woman, but I'm not that person yet.Sign My Guestbook | Read Tributes Written May 23, 2012 11:11pm by Kate Parker Copied from Facebook:? "Back at the motel. The unveiling of the wall was... powerful. I guess that's the best adjective. Four Heroes (kids) did not survive to attend the ceremony, so their parents were there in their stead. That broke my heart because I remember wondering (in December) if Joshua would be alive to attend the unveiling in May. I felt so sad for those parents who so recently lost their beautiful kids. Joshua had a hard time ~ lots of people, lots of noise = too much input for him to process. We ended up giving him 330mg of oxycodone in the space of 2 hours & that barely kept him "okay" to get through the event. He rallied briefly for the dove release & enjoyed some cotton candy-flavored ice cream, but then was ready to come back to the motel to rest. It was beautiful & touching & emotional & just so, so special. A true honor for our little boy to be chosen amongst a group of amazing kids to represent the thousands who battle life-threatening conditions every day. I'll share more pictures later, but this is one I took from the Wall of Courage."We'll be heading home tomorrow. For tonight, it's more swimming & then packing up.? Thank you for praying for Joshua (and the rest of my family) ~ overall, things went really well & I am SO thankful for the blessing of so many wonderful experiences & memories that my kids were able to mint with their brother.Written May 21, 2012 10:33pm by Kate Parker We made it safely to Portland and are comfy & cozy in our 2 suites at a lovely motel (hotel?).? Charley & I will be taking the kids to swim in the pool in a bit, but he & Adam are at the store to pick up a couple items that we forgot (juice, mayonnaise, ketchup), so I've got a few minutes to update here.? :)Joshua traveled *beautifully*.? For the first time in as long as I can remember, he stayed awake for the entire 4.5 hour trip!? He did have some bouts of pain, but quickly-administered doses of medications worked to get things under control and he was able to continue happily interacting with Emily, David & Adam (those are the kids I had in my car; Charley had the others in his ~ with Joshua's wheelchair, I can't haul a lot of kids in the van anymore).? It was so much fun hearing Joshie laughing & chattering away behind me as I drove.? I loved it!He's excited to go to the pool, but it's obvious he is getting really tired.? I'm going to take him down for a short time & then leave Charley, Megan & Adam with the little kids while I bring Joshua back up to the room to go to sleep.? I think he's going to be more than ready for bed very soon!Sign My Guestbook | Read Tributes Written May 21, 2012 3:15pm by Kate Parker We're heading out, but I wanted to let everyone know that Joshua is feeling much better.? Thank you for praying for him.? Please continue to cover him in prayer this week.? Thank you SO SO SO SO SO SO SO much!!!Sign My Guestbook | Read Tributes Written May 20, 2012 7:08pm by Kate Parker Please pray for Joshua. He had a sudden increase in pain last night that had him holding his head & crying. He said that ball fell back in his head & won't leave... that the pain feels like a ball in the top of his head. He wanted Sarah (one of my FB friends) to bounce it back to the moon like she did last November, so she said she would bounce it past a meteor & past the stars into a black hole for him. You & I know, however, that this is a matter for God, and I also believe it's an attack by the devil against my little boy AND my family since we are leaving tomorrow to take the kids to the zoo on Tuesday, to OMSI on Wednesday & to the Community Hero celebration on Wednesday evening. PLEASE PRAY with us that Joshua won't hurt & that he will be able to ENJOY this trip & especially the Community Hero celebration, where he's being honored. This is a really big deal to my family... it's a big honor for Joshua & we want him to be able to be happy, not spend the time hurting terribly with us not able to get his pain under control (which is what happened last night & we've been battling this afternoon since he woke up at 3:30pm). Please pray. Please please please.Written May 19, 2012 1:43pm by Kate Parker Do you remember when I shared that Joshua had been chosen as a Community Hero by the Children's Cancer Association here in the Pacific Northwest?? Community Heroes are defined on the CCA website as "An exceptional group of 25 children and teens who represent the thousands who battle life-threatening illnesses with strength and grace.? The Heroes reside in Oregon and SW Washington, and were nominated by the medical professionals who work one-on-one with them."? The site also shares that "Our Community Heroes are featured on a traveling educational exhibit."? Joshua had a photo shoot with a professional photographer several months ago and this Wednesday is the unveiling of the exhibit, appropriately named "The Wall of Courage".? Our family will travel to Portland to attend the ceremony & attend a reception afterward.? Joshua will receive an award & there will be some special surprises, too.? I'll share more after Wednesday.? When we did the photo shoot, Joshua was struggling, which left me wondering if he would make it to the May 23rd unveiling of the exhibit.? I am so thankful that he has.? Yesterday, Megan & I were talking about how it's been 6 months since Joshua's last brain surgery & how amazing it is that he is stable right now.? His pediatrician told me that NO ONE amongst Joshua's medical team had thought he would still be alive to see his 6th birthday, yet here he is, still enjoying his life to the fullest that he is able.? Granted, his "normal" doesn't look like the typical kindergartner's normal, but compared to what Joshua looked like last October before having the 3 surgeries that God used to extend his life, how Joshie is these days is completely amazing.? Each time we see declines in his skills or his pain gets worse & we scramble to find a better balance with his medications once more, we're reminded of how fragile he truly is, which makes being able to find the "sweet spot" that allows him more time of stability even more of a blessing.? As we travel to Portland to honor our little hero, I will give thanks to the Lord for allowing Joshua to go with us in body, not just in spirit.? Would you please pray that Joshua will travel well, tolerate the changes in his routine, have pain that is controlled & that he will be able to thoroughly enjoy the ceremony on Wednesday?? I am so hopeful that this will be a wonderful experience for him & a time of making some really special memories for all of my kids.Sign My Guestbook | Read Tributes Written May 14, 2012 2:53pm by Kate Parker Yesterday was a fabulous day.? Aside from needing a couple extra doses of oxycodone in-between his scheduled doses, Joshua was pain-free & the happiest he's been in soooo long!? He needed one rest period during the day, but was otherwise awake, alert & happy.? He was more quiet than normal, but it was not due to pain or unhappiness.? He woke up & was carried downstairs by Megan, who brought Joshua over to where I was sitting on a couch in the family room so he could give me hugs, kisses & wish me Happy Mother's Day.? Let me tell you, after all of the hugs, kisses & well-wishes from Megan, Adam, Emily, David, Sarah, Isaac, Bethany & Hannah, getting loves from Joshua was icing on my cake of HAPPY!!!We had a low-key day, which was absolutely perfect for us. I was spoiled by my kids & husband by getting a day off from doing all that I usually do.? Joshua played outside in the sprinkler with his brothers & eventually commandeered the hose, using it to soak the boys.? Hearing his laughter mingling with his brothers'? was simply beautiful.? I am SO thankful that we have, once again, been fortunate to find the "sweet spot" with his medication dosages & timing of administration so that he is able to have these hours of good times with us all.? I thank God for giving Joshua's doctors and myself wisdom when we need it so that we can enable Joshua to have the best days possible.Thank you to everyone who has joined me in praying for happy times & good days for Joshua.? Yesterday was as perfect a day as I could hope for & is proof, to me, that Joshua still has lots of living left to do.? Once again, I express gratitude that his decline is slow.? I am SO INCREDIBLY THANKFUL that we get to have hours, and even entire DAYS, where he's happy & playful, mixed in with the hard times.? I am thankful that I can still answer, "He's declining, but he's mostly happy as he goes," when people ask me how Joshua is doing.Thank you, God, for allowing me to be this precious child's mother.? Thank you for the privilege of being Mom to all 9 of the amazing people you've entrusted to my care.? And thank you for giving me such a lovely day yesterday with all of them.? In light of where we are in this season of life, I could not have asked for a better day.Sign My Guestbook | Read Tributes Written May 12, 2012 6:45pm by Kate Parker Sometimes I get a comment in the guestbook that leaves me saying, "Wow, what I wrote didn't translate well, did it?"? As a result of a comment I received (and have since deleted), I felt it necessary to write again.? I don't want anyone getting the wrong impression of what is happening with Joshua, so when someone writes out a prayer asking God to let Joshua go home soon (ie: to die soon), it's obvious that I'm not explaining very well & need to take some time to clarify.I made a photo album to show you the range that we are experiencing with Joshua.? I have been trying to convey that when his pain is controlled & he isn't hurting, he is HAPPY & enjoys his life.? No, he isn't able to do even 1/4 of the activities that a typical 6 year old can do, but what he can do, he has a great time doing, & we (his family) love spending time with him doing those activities.? Joshua's "good times" last, on average, 20-30 minutes, though he has had spurts of up to an hour before he is utterly worn out & needs to rest.? On a good day, he will have multiple 'good times' & not a lot of breakthrough pain requiring extra medication.? On a bad day, he sleeps for 20+ hours.? Most days fall somewhere in the middle, and over the past week or so, his need for extra pain medication had increased to the point where he was sleeping excessively-long amounts of time, so we were forced to add Methadone back into his medication lineup, which made him even more sleepy.Meanwhile, Joshua isn't ready to give up.? He doesn't want to sleep his days away.? He wants to LIVE & he wants to spend time doing fun stuff with his brothers & sisters, not being zonked out on the couch or in bed.? That's what we want, too.? It has NOTHING to do with our refusal to "let him go".? It has everything to do with him not being at all ready to go.? Look at the pictures in the album & realize they were taken this past month.? The ones of Joshua playing with sidewalk chalk & spraying himself with the water hose were taken TODAY.? He is terminally ill & he is continuing to decline as time goes on, but he is not standing at death's door with a family holding him back, doing all we can to force him to keep going.? The time will come when Joshua is ready to go to heaven, when his spirit is tired & he no longer wants to fight, but that time is not now.? Right now, though his body is obviously getting tired, his spirit is still going strong.? As long as HE wants to fight, my family will do everything we can for him.? THAT is why I wrote what I did this morning ~ that I hate this & it's awful.? Watching Joshua struggle to wake up & stay awake is so hard because it is not what he wants (and, obviously, it isn't what I want, either).? And when he asks me if I can give him medicine that doesn't make him sleep so much, I feel helpless because I can't give him what he wants.? Such a simple request, but I can't grant it.? It sucks.? I want him to be able to do the things he enjoys doing.? I hate having to increase his medication dosage amounts & then change his fentanyl patches because I know it's going to result in him sleeping an entire day away.? I hate signs of decline, loss of skills (his ability to draw is like that of a 2 year old now ~ I included a picture in the album), increased pain, increased sleeping... anything that restricts Joshua & makes things harder for him.? I know it's going to happen, but he has such a strong, fighting spirit.? He wants to stay here with our family.? He wants to be in Adam & Faith's wedding.? He knows he is going to heaven, but he doesn't want to go yet. I don't know if he will ever get to the point where he's tired of fighting & wants to give up, but like I've said before, as long as he wants to fight, we'll stand beside him & fight, too.? Before I end this, I would like to give a tiny etiquette lesson for people wanting to offer support to parents of kids with terminal illnesses: DO NOT write that you pray God will take a child home soon. That is NOT comforting; it is upsetting!? I understand it is said it with the kindest of intentions, but honestly, praying that a child will die soon is not something that parents want to know you're doing, so if that is what you're praying, please keep it to yourself.Also, a lot of things are written with great emotion in the heat of the moment by parents of chronically-ill children... it doesn't mean that things are dire, even if they sound that way to you. When a child is nearing death, the parents will generally know it & they will say something to let others know that they know their time with their child is short. Until the time comes that a parent says they know their child is at the end, keep believing that they have good days ahead of them & write things that support that perspective. You may think it's time for the parents to let their child go, but only the parents can know with certainty when that time is (being that they're the ones living with their child), so please try to trust that they will continue doing what they believe is best for their child just as they have done for that child's entire life. Thus ends my etiquette lesson. Thank you. Written May 12, 2012 10:01am by Kate Parker I hate this ~ I hate this ~ I hate this!!! We've reached the place where, in order to keep Joshua mostly-pain-free (not even totally without pain), he is drugged to the gills. He is fighting to stay awake even while his eyes are droopy & he keeps nodding off while sitting at the computer.? I finally woke him last night after he'd slept 22 hours because the big kids & I (selfishly) wanted some "awake time" with him.? After 2.5 hours of eating a bunch of different snacks, laughing, playing games on the computer & cuddling, he was back to sleep.? He's awake now (8am), but only because he woke with head pain (what a lousy way for a little kid to wake up), but his voice is hoarse & sleepy-slow.I HATE that this is where we are at!? He wants me to find different medicines that will make his head not hurt but not make him sleep all the time.? Um... WHAT would those be?? All narcotics make a person sleepy, especially in the doses Joshua requires for pain control! (That is a rhetorical question, by the way. I am not actually asking for suggestions of therapies or herbs or vitamins because what we're willing to do/give Joshua in the realm of alternative medicine, we've already done or are already doing.? Thank you, though, to those who would want to suggest acupressure or acupuncture or the like.? I appreciate that you care).? This is so awful... he has SO MUCH LIVING he still wants to do!? C'mon, God ~ DO SOMETHING to help Joshua AND give us more time with him!!!!!!!!!!? Please!Sign My Guestbook | Read Tributes Written May 6, 2012 9:28pm by Kate Parker I wish I could write an update about Joshua saying he's doing great.? Heck, being able to say he's about the same would be okay, too.? Unfortunately, neither of those things is true, and as usual, pain is to blame.His head has been hurting more & more, so he's requesting (and receiving) more breakthrough doses of oxycodone.? Getting so much medication has made him increasingly sleepy & in the past 5 days, he's had 2 days that he slept 21 hours per day & the rest, he's slept 16-18 hours each day.? He tries to be happy when he's awake, but he's been having such bad headaches that the bursts of good times are short-lived.? Yesterday, he started asking for more pain medication by specifying how many milliliters he thought he needed ~ saying things like, "My head really hurts.? I need 2mls of medicine."? Six year olds should not have any concept of how medication is dispensed.? It makes me sad that mine does.Yesterday, we added methadone doses during the day back into Joshua's routine, hoping it would help reduce the amount of breakthrough doses of oxycodone he's been needing.? It seemed to help, as Joshua complained of headache just one time in-between his scheduled doses of oxy.? This afternoon & evening, however, he's been having a lot of pain.? He woke at 2:30pm, had a scheduled dose of oxy at 4pm, needed breakthrough doses at 4:30pm, 5:30pm & 7pm, and another scheduled dose at 8pm (plus methadone).? That's a lot of oxycodone in 5.5 hours.? The palliative care doctor's plan is to keep Joshua on the current dose of methadone for a week, then double the dose for a week, and then, if necessary, increase again by 50%.? My hope is that we'll find that "sweet spot" combination of methadone & oxycodone that enables us to keep Joshua's pain under control while maximizing the number of hours each day that he's awake.? Already, we're seeing the increased "dopeyness" (yes, I know that's not a real word, but I don't know how else to describe it) from the small dose of methadone.? I wish that were the only negative symptom we're observing, but it's not.Joshua doesn't want to relax on my lap anymore ~ he hasn't been able to curl up in my lap for quite awhile because his spinal cord is too tethered & trying to bend causes too much pain, so he's been reclining against me, instead.? Now he is having difficulty doing even that because he needs to sit up to breathe well.? He is having positional apnea ~ when he lays in certain positions, his oxygen level drops dramatically.? While we rarely use his pulse ox anymore, whenever we increase a medication or if we have to give him a lot of oxycodone in a short period of time or sometimes when he's sleeping & his breathing is very slow, we hook him up to assess how he's doing.? What we've noticed is that certain positions will drop his oxygen level into the low 70's (percent saturation... normal is above 95%).? When his position is okay, his O2 is great, so most of the time, there's nothing to worry about.? What it tells me is that he's probably got lots of scar tissue built up in his head again & when his head is in the wrong position, there's pressure against his brain stem that affects his breathing.... or maybe the "bad" positions kink his brain stem more than usual.? I can't know for sure, but those are my hypotheses. It's not something I like knowing is happening, but it's also not something I can do anything about outside of keeping his head in "good" positions, so I'm not worrying about it excessively.? He's got more cognitive impairment.? His processing speed is definitely slowing down, which means when you ask him a question or tell him something, there's an obvious pause while he takes time to comprehend what was just said.? Questions are getting more difficult for him to answer ~ tonight, I asked him how old he is.? He could not remember.? I told him he is six, then asked him again, "How old are you?"? He still could not remember, even though I had *just* reminded him.? He is tired.? Even when he's awake & happy, he's still tired.? He has little stamina for anything anymore & even short excursions in the car or his wheelchair completely wear him out.? He is unable to deal with lots of noise anymore.? He seems unable to filter the sensory input very well & as a result, he tends to just shut down by going to sleep as his means of escape.? Sadly, his best hours of the day now occur after David, Sarah, Isaac, Bethany & Hannah go to bed because it is more quiet once they're sleeping.? Joshua still enjoys spending time with his siblings ~ very much so ~ but if they are all talking or playing around him, he gets overwhelmed very quickly, which is hard to see happening because they adore their baby brother & it hurts their feelings that he can't handle being around all of them for very long. As usual, what we're seeing are signs of Joshua's slow, inexorable slide downhill.? At this point, I'm thankful the decline is slow because he has a decent quality of life when he's not hurting, & as long as we can keep that under control, there are good times to still be had.??? Sign My Guestbook | Read Tributes Written May 4, 2012 9:25pm by Kate Parker I had an interesting conversation with an acquaintance that brought up a topic I think is worth discussing here.? The question came up of why bother praying when it doesn't seem to make a difference, anyway, and when God doesn't answer our prayers?I completely understand feeling as though prayers don't matter.? I have actually gone circles in my own mind with that one, but have come to an understanding that makes sense to me.? God is omniscient & omnipresent. He knows everything.? Nothing surprises him because he knows what we're going to choose to do before we ever do it. So, using Joshua as an example, before Joshua was even conceived, God knew he would be born & He knew every single thing that would happen in Joshua's life. He knew, for example, that on April 14, 2011, Joshua would experience respiratory failure.? He knew, too, that many, many, MANY people would stop what they were doing & pray for Joshua's life to be spared.? For all we know, God's original plan had been for Joshua to die on April 14, 2011, but because of the prayers of others, He changed His mind, way back before Joshua had even been conceived, and decided that He would grant Joshua more days on Earth rather than end his life on that day.? That happened in Biblical times, you know ~ God had plans to destroy something or someone & interceding prayer by others altered the outcome (Exodus 32, Jonah 3:1-10, Genesis 18:16-33, Isaiah 38 are some examples) ~ so why would it not be something that happens nowadays, as well?? I am convinced that prayer CAN and DOES make a difference in the outcome of things, so it is worthwhile to pray, especially on behalf of others who are in need. I know that sometimes, you pray & pray for someone or something, & the situation does not turn out the way you were praying for.? When that happens, I understand how it could feel as though your prayers did no good (I have felt that way when praying for others). Ultimately, though, we don't know what impact our prayers have on another person's life, and even if our prayers don't alter the outcome of a situation, they aren't wasted.? The reason we pray is not to get results, but to further our relationship with God. He wants us to interact with him, to know Him, trust Him & remember Him in everything we do. He wants us to play an active role in His plan for the universe, but He doesn't promise to be our genie, fulfilling our every wish.That leads me to the other part of the question ~ does God answer prayer?? The answer to that is an unequivocal YES. The caveat, however, is that prayers are not always answered in the manner we want them to be.? When we ask God for something, or to do something, the answer can be "yes", "no" or "wait/not yet".? We don't like hearing anything but what we want to hear, so when we ask for something like our spouse to get that big promotion or for a child to be healed and it doesn't happen, it would be easy to throw our hands up in defeat & say, "Prayer doesn't matter; God never listens to me, anyway!" The truth is, though, that God DID answer your prayer.? He said, "No."? As human beings, we don't like being told no when we really want something, so we get frustrated & upset at having our desires thwarted.? The thing to remember is that God is always working things out in our lives for our good.? That does not mean things in our life will always BE good. It means that God is constantly using circumstances to result in things that will be good FOR us.? To accomplish that, He sometimes has to refuse us the things we want.? When your small child comes to you & asks if they can have ice cream 20 minutes before you are going to serve them dinner, you tell them no ~ they'll have to wait. You aren't being a jerk by not giving them ice cream (though they might think differently).? You aren't being deliberately unkind.? You just know that dinner is coming & it would benefit your child (ie: be for his good) to wait. I believe God works in a similar way when it comes to prayer. God does answer our prayers and, just like a good father on Earth does, He knows whether to grant us what we ask for or to make us wait or to tell us, "No."? It's up to us to trust that when God doesn't give us what we want, it is because what we were asking for was not in our best interest.? It's up to us to have faith that God has a good plan He is working out on our behalf & that even if His plan makes absolutely zero sense to us at the present time, He loves us more than we could ever imagine & He sees the future clearly & therefore, what He is doing is what is best for us. Admittedly, it's difficult to accept that Joshua dying is in his best interest or for our good.? I struggled for a long time with comprehending how the death of my child could, in any way, be a good thing for him or the rest of our family.? What I have concluded is that Joshua dying will NOT be a good thing for us. Losing him will be a terrible thing for our family ~ the worst thing that has ever happened to us ~ but Joshua getting to leave his broken body to live in heaven with Jesus & God is the best thing that could ever happen to him.? We will hurt because we won't have him in our midst to hug, kiss, tickle & interact with, but God is going to use Joshua's death, when it happens, to work out something good for those of us who must go on living without him. He is already using Joshua's story to change attitudes, to strengthen faith, to reach others & to soften hearts. Among the members of my family, we have so much more compassion toward others who are hurting because we are experiencing the pain of watching Joshua decline. God is using this journey to stretch & grow every single member of my family, myself included, to teach us things like patience, perseverance, thankfulness & to increase our faith & trust in Him.? We spend more time with Him because we are forced to lean on Him when we lack the strength to take one more step on our own, & because of our circumstances & the? challenges we are going through, He will be able to use us more, as time goes on, to help others. God doesn't want Joshua to suffer, but He allows it for a greater purpose, and though this is not anything I would have ever chosen to endure, nor would I have ever wanted my child to be forced to walk the path he's on, I still trust that God has His reasons for allowing it & I still hold onto the knowledge that God will bring blessings out of this pain and that one day, I will understand why.I want everyone who is praying for Joshua to be healed to know that their prayers will be answered.? God could choose to make a way for Joshua to live a long life on Earth, or He may choose to transition Joshua from living here with my family to living with Him in heaven.? Either way, Joshie will be healed.? I want people to recognize that truth because if Joshua's healing takes place when his broken body dies & his spirit ascends to heaven, I desperately do not want the people who have been praying for him to feel as though their time was wasted because they didn't get the outcome they were praying for.? I want people to know that their prayers matter... so many times, I have felt an indescribable peace surrounding me when there was nothing peaceful going on & I should have been falling apart.? I know that it was because of prayer that I felt that peace.? When a crisis occurs, I post something here & on Facebook asking for prayer because I KNOW that people are faithful to respond & I can FEEL the difference in my own spirit when people are praying.? Maybe that sounds hokey to someone who has not accepted Jesus into their own life, but it's completely true.? I have felt such concern lately that there might be some who lose faith when Joshua dies & I don't want that to happen.? Every prayer offered on Joshua's behalf has mattered.? It has made a difference.? He's still HERE even though there have been several times when there were medical professionals telling me they did not think he would survive "this" hospitalization.? I am convinced that God's original plan was changed at least twice in Joshua's life (thus far) ~ the first time being on November 12, 2008, when Joshua had a tethered cord surgery that we had gone into KNOWING he would come out of it with a paralyzed right leg.? Instead, his neurosurgeon was given the ability to do things she had never done before (literally) & Joshua came out of that surgery not only moving both legs, but fully detethered for the first time in his life.? The second time was when he went into respiratory failure April 14, 2011.? There is no explanation for why his brain stem suddenly began working perfectly again, but if it hadn't, he would have died that day.? There really is nothing that will convince me that the prayers of everyone interceding for my son did not make a difference.? And because of that, it would make me incredibly sad if anyone became disheartened if God does not see fit to let Joshua stay here.? Please know, no matter what happens, God is good.? He loves us all.? He has marvelous plans for each of us & He'll make beautiful things come out of even the most ugly, painful, awful situations if we give Him time to work things out.? It doesn't mean we won't still hurt & be sad when our world falls apart ~ believe me, the day I have to begin living without my Joshiebear by my side will be the worst day of my life ~ but it does mean that we do not have to live without hope despite the bleak circumstances we're facing, and that can be what enables us to keep going, and because we all belong to the family of God & can pray for each other, we never have to go through the hard stuff alone.? I have said it many times before & I am sure I will say it many times in the future, but the sentiment remains sincere ~ thank you for praying for my little boy & for my family.? Thank you for caring about us & thank you, especially, for helping us to bear the load that God has us carrying.? It is a comfort for me to share Joshua's unfolding story with you.Written May 4, 2012 2:47am by Kate Parker Most people know that music is important to me.? I have always found solace in songs whose lyrics speak to my heart.? I believe the reason God “speaks” to me through music is because He created me to respond to it the way I do.? Through the past few years, through surgeries & crazy hospitalizations & searching for the reason behind Joshua’s inability to stay “fixed” & fighting back fears& insecurities & uncertainties, there have been some songs that were so perfect for the situation that they will forever be known (by me) as “Joshua songs”.? Some of them include............“Savior, Please” by Josh Wilson was a song that I listened to over & over during the past 3 hospitalizations.? I would walk through the hospital listening to this song on my iPod, the words a plea to God that I would think but couldn’t speak.“He’s My Son” by Mark Schultz is a song I’ve played when I cannot find words to pray.? When Joshua has been hurting in PICU or at home & I feel like begging God to DO SOMETHING, the words to this song offer up the cry of my heart.“Stand In the Rain” by Superchick is a song that I love.? The lyrics resonate for me.? It’s like they wrote this song with me in mind & because of that, it’s my go-to song when I am feeling overwhelmed& need to go out for a run to release my pent-up feelings.When I am exhausted & feeling alone, I listen to Mark Schultz’s song, “He Is”.? It is a song of worship for me… a reminder that even in the valley, I’m not walking by myself.Kerrie Robert’s song “No Matter What” is a song that I heard for the first time on April 13, 2011, which was the day before Joshua went into respiratory failure & was Life Flighted to Portland.? That night (April 14th), Megan posted the song on my wall on Facebook & the lyrics really hit my heart& have become somewhat of a mantra for me this past year.“I’m running back to Your promises one more timeLord that’s all I can hold on toI’ve got to say this has taken me by surpriseBut nothing surprises YouBefore a heartache can ever touch my lifeIt has to go through Your handsAnd even though I, I keep asking whyI keep asking whyNo matter what, I’m gonna love You No matter what, I’m gonna need YouI know that You can find a way to keep me from the painBut if not, if not - I’ll trust You No matter what.That song is one I listen to as a silent promise from me to God.? It speaks my heart… even when I am hurting so badly I can’t form the words with my mouth.“What Faith Can Do” by Kutless.... oh my… how do I explain what this song means to me?? When Joshua was facing yet another surgery in November, 2009 (another spinal cord detethering & placement of his LP shunt), God gave me this song.? Every single time I heard it, I cried.? It didn’t matter where I was or what I was doing.? I could not hear it without tearing up.? It spoke to me on multiple levels ~ Joshua’s courage, his strength, the encouragement that faith can make a difference & change the outcome that seems unavoidable, and honestly, it was almost like a personal message to me from the Lord, telling me to not give up & to keep facing the hard stuff that was coming my way because I really would get through it.? I imagine that sounds pretty crazy to some people, but that’s how I feel about this song.? I love it.? Further cementing it as a "Joshua song" is the video that Adam made for me.Scott Krippayne’s “Sometimes He Calms the Storm” is a reassurance & a reminder that yes, hard times will come, but God is present in all circumstances.? Either he calms the storm or He calms me.? When things are hard with Joshua, this song is one I listen to.When Joshua began really declining, Adam made this video & shared it with me, which introduced me to the song “You Give Me Hope”.? Honestly, I don’t even know who sings it, though I do know it is from the movie "Letters To God". It was one of the first songs God gave me that addressed Joshua’s current situation (terminal illness).? It spoke Adam’s heart to his brother & will forever be a "Joshua song" because of that.I don’t remember when I first heard Casting Crown’s song “Praise You In This Storm”, but I remember being unable to see through my tears the first time I tried to sing along with the song as it played on the radio while I was driving to Portland with Joshua for surgery.? I remember telling God, “This song… I’m just singing it to You because it speaks better than I can.”Matthew West’s song “Strong Enough” is another song whose lyrics I can sing as I drive down the road or whisper quietly when I am sitting in a room waiting for Joshua to get out of surgery and offer up as a prayer to the Lord.? I so need Him to be strong enough for both of us because I am so weak.? Without Him, I would not still be standing.When Joshua went into respiratory failure last year, God surprised me with the song that He introduced me to.? I would leave the hospital to take a shower at the Ronald McDonald House (Adam would stay with Joshua) & while there, I would listen to the radio.? A few times, I drove to the grocery store to replenish our supplies.? Every time I turned on the radio or got into my car, the song “Blessings” by Laura Story played.? And every time I heard it, I turned the radio off & told God aloud that I did NOT want to hear that song!? The message of the song is that blessings can come through lousy circumstances.? In light of my circumstances at that time, with my 5 year old son lying in a hospital bed & no one thinking he was going to live much longer, the last thing I wanted to hear from God was that He could bring blessings from everything that was shredding my heart.? Finally, though, I gave in & listened to the song, really listening to the words, and I understood.? The lousy stuff that happens isn’t what God wants for us, but there can be good that comes out of it… the blessings in disguise.? Once I softened my heart to what God wanted me to hear in that song, I went from despising it to thinking it was absolutely beautiful.? Amazing what a shift in perspective can do for a person, huh?My future daughter-in-love, Faith, gave me a song right before Joshua’s brain surgery last November.? She said she was nervous about telling me about this song because she didn’t know how I would react to a song basically saying, “Hey God, I’ll walk wherever you want me to even if where You want me to go totally sucks”, but she felt like she was supposed to point me to it.? I listened & was glad she had obeyed the prompting of the Holy Spirit because the song, “Let the Waters Rise” by Mikeschair, was perfect for expressing my feelings.? With lyrics like this, how could I not love this song & the timing of being introduced to it?“Don't know where to begin,It’s like my world's caving inAnd I try but I can't control my fearWhere do I go from here?Sometimes it’s so hard to pray When You feel so far awayBut I am willing to goWhere you want me toGod, I trust YouThere's a raging sea Right in front of meWants to pull me inBring me to my kneesSo let the waters riseIf You want them to, I will follow You.I will follow You.”No, following God isn’t always easy or fun, but that doesn’t mean we shouldn’t do it.? I'm thankful for songs that remind me of that truth, which is a good thing when the going gets tough. When I was getting things organized for Joshua’s memorial service, thinking it would be helpful to get as much ‘out of the way’ now so that when the time comes, I don’t have to deal with it, I asked God to give me songs for the service.? He did, and those songs are now part of my Joshua collection of music.? Adam is making videos to accompany a few of the songs and two staff members at Legacy Emanuel will come to the service so they can play music & sing another song.? When the time comes, I’ll share these special songs.? I mention them not to be coy, but just to emphasize how kind the Lord is to me. He cares about what is important to my heart, even if no one else understands it, and long after Joshua has gone to heaven, I will have dozens of songs to listen to & be comforted by.? That, to me, is a significant gift from God, and one I thank Him for.? Edited to add:? I cannot figure out why some of my text is huge & some is small, nor why the font is not the same throughout this post.? Not a clue.? I've tried to fix it for the past 10 minutes & it's not working, so I'm giving up & going to bed, instead.? :)Sign My Guestbook | Read Tributes Written May 2, 2012 2:04am by Kate Parker About a month ago, Joshua asked me if I would buy a book to read to just him.? I asked him if he meant a special story like the book I used to read to Adam when he was a little boy (Love You Forever) & he said, "Yes!"? I told him I would & very shortly thereafter, I found myself at Barnes & Noble with Emily and Bethany before Bethany's ENT appointment.? The first book I picked up & thumbed through made me teary, so of course that's the one I ended up purchasing.? :)? The book title is "Wherever You Are My Love Will Find You".? ()? Each page (or 2-page spread) has a picture of a child surrounded by sparkles which represent his mother's love.? When I took it home & read it to Joshua for the first time, he LOVED the sparkles & what they represented.? With each page turned, he would touch the sparkles & tell me, "There's the love!"? So far, I have managed to get through the book without getting choked up exactly zero times.? It's just too perfect for Joshua... too meaningful to me... and the memories we are making as we snuggle together each night & read this book together, just the two of us, are so tender& special.? I can honestly say that I am never going to read this book to another child.? It is Joshua's book.? His special story.? Something we don't share with anyone else, and that makes it incredibly precious to me.A few nights ago, after reading the story to Joshie, he asked me if it was true that my love could find him anywhere.? I assured him that yes, it was absolutely true... no matter where he goes, my love is always going to be with him.. even in heaven. "Can your love fly?"? I promised him that it could. Then, cuddling closer as I hugged him, Joshua sighed, "That would be so cool."? I asked, "What?? To have my love go with you to heaven?"? "Yes," he replied. Then, just before closing his eyes, he softly promised, "And my love will find you, too."? I gently kissed his forehead, and since he'd drifted off to sleep, he didn't mind my tears falling against his cheek. These conversations we have are a form of sweet agony for me.? I LOVE when Joshua gets philosophical & wants to talk about things like sending butterflies from heaven or how my love will find him even when he's not here anymore because I am happy to have the opportunity to know what is going on inside his mind & how he is processing everything that is happening in his life, but at the same time, it's a sharp pain like pouring rubbing alcohol on an open cut.? Joy & heartache mingle every day, performing an intricate dance, & I never know which is going to lead... which emotion will predominate. I can try to not get mired down in sadness (and I do try to stay focused on the positive rather than the negative), but I have absolutely zero control over the emotion suddenly showing up & surprising me with the forcefulness with which it hits.? It just happens & I often have no warning that it's coming, which is why I get choked up on a regular basis.? Another conversation that Joshua had recently involved Adam & me and occurred as we stood in an aisle at Wal*Mart.? Joshua rarely wants to leave the house, but when he does want to go someplace, we indulge his whim.? Last week, after the little kids had gone to bed, he announced that he needed a toy.? I asked what toy, thinking he wanted something from upstairs.? He answered, "I don't know yet.? I'll know it when I see it at the store."? Ohhhhhh.... comprehension dawned...."You want me to take you to Wal*Mart to get a toy?"? "Yes, please."? All righty, then!? Adam & I got Joshua dressed, loaded him & his birthday gift card into the van and headed out to the store.? When we arrived, I pushed Joshie in his wheelchair to the toy section.? We slowly meandered through every aisle of boy toys until he found what he wanted ~ a Yoshie remote-controlled car.? He held his new toy in his lap and was happy, chatty & smiling widely.? Then we walked past a bunch of teenagers who were openly staring at him & suddenly, my sweet little boy was hanging his head, silent, the smile completely gone from both his eyes & his lips.? Concerned, I asked Joshua what was wrong.? "Did those kids staring at you upset you?"? He slowly nodded, then quietly asked, "Can we go home now?" I don't know about Adam, but I was simultaneously sad & angry.? No wonder Joshua rarely wants to go out!? He gets stared at every single place we go.? When it's little kids, I don't care (and neither does he), but when it's school-age children or, worse, teenagers or adults, it REALLY distresses him to be stared at.? People will ask, right in front of him, "What is wrong with him?"? Um.... hello, he can HEAR!!!? And how rude can you be, anyway?? I understand that what you want to know is why my son is in a wheelchair, so why don't you just use those words?? Or, better yet, why don't you acknowledge his existence by saying hello to him before you ask his mother anything about him?? He's a child, a little boy, not just a diagnosis or a kid who has "something wrong with him".? And while I don't mind educating people about spina bifida (I don't get into the whole brain stem dysfunction/terminally ill status with strangers while standing next to Joshua), I don't think I am obligated to satisfy everyone's idle curiosity.? So.... on that night, after watching my sweet little boy's happiness fade away on account of some teenagers who hadn't been taught that it's not polite to stare, point or openly gawk at another person, I was done, and I decided enough was enough. I knelt down beside Joshua & told him, "You know what?? If someone is staring at you & you don't like it, you can tell them, 'Quit staring at me!'? Or you can tell Adam or me that someone is staring and WE'LL tell them to quit staring at you."? Joshua opened his eyes& looked at me, surprised.? "Really?"? That was all he said.? "Oh yeah, buddy.? You can tell anyone who is staring to knock it off and I will back you up.? I promise."? Adam chimed in, "If anyone is staring at you and you don't like it, I'll tell them, "Stop staring at my brother!? It's called a wheelchair. Keep moving!"? Upon hearing that proclamation, a slow smile spread across Joshua's face & his eyes lit up again.? "I can tell people to not stare at me?"? he asked.? Adam & I answered in unison, "Yes!"? Adam elaborated, telling his little brother, "People don't need to be staring at you.? There is nothing wrong with you!? Just because they're jealous that they don't have a cool green wheelchair like you do does not give them the right to stare as you go by."? Joshua smiled at that, clearly feeling better about the situation.? He told us that, "If someone stares and I don't like it, I'll tell them, "Quit staring!"? I assured him that that would be perfect and that yes, Adam & I would definitely tell people to stop staring at him, too.? That satisfied Joshua, gave him a feeling of empowerment, and brought the smile that I love so much back to his face as we finished our shopping.? We will be heading to Portland tomorrow (Wednesday) morning since Bethany needs to see her specialists.? Our pediatrician wanted to do a direct admit to the hospital (for Bethany), but her rheumatologist wanted to see her first, so I'm unsure whether or not she will be admitted to Emanuel tomorrow.? It will depend on what the rheumatologist wants to do.? I am hoping Joshua will stay chilled-out & stable while we're up there.? I have no reason to think he'll suddenly have a problem since he's staying relatively stable & doing all right, but he's been known to quickly "tank" & now really would not be a good time.? Not that ANY time would be good, but if possible, I would prefer to not have a repeat of January, 2011, with both Bethany & Joshua admitted to the hospital in Portland at the same time.? For those interested, I'll be updating Bethany's page at Sign My Guestbook | Read Tributes Written April 26, 2012 10:51pm by Kate Parker I apologize for the lack of updates.? I did write an update a few days ago, but when I clicked "post", my internet took a hiatus or something & I got a "page timed out" message.? Repeatedly.? When my internet finally decided to behave again, I'd lost the update I'd written.? I was so frustrated & tired that I didn't try again, thinking I'd come back the next day & post an entry. Then life got in the way & it didn't happen.? A couple people emailed today to ask if everything was okay, which reminded me that I needed to get over here.? I will reiterate, though, that if anything significant happens with Joshua, I will update here.? Always.He is as good as he can be right now.? Our palliative care doctor tweaked medication dosages once more & since then, we are finding it easier to keep Joshua comfortable.? The drawback is that Joshua sleeps more, but it's not upsetting him the way it did a month ago, so... I don't know... I guess I should be thankful for that, and I *am* relieved that he's not bothered by it, but it still bothers *me*.? I don't like having Joshie asleep for the majority of the day. He slept for 21 hours on Tuesday.? 18 hours yesterday.? On average, he's sleeping about 16 hours.? Some days more, some days less.? The hours he is awake, he is much less active than he used to be, but he is generally happy.? On bad days, he has a lot more pain & we have to give more medication, which pretty much knocks him out, but thankfully, bad days aren't happening too often.I think the best way to explain what we see happening with Joshua is to say he's wearing out.? He just seems tired. Even when he's happy.? It's not one big thing... it's all the little things... the way he has to sit up to do his approximation of a yawn, the way he gasps for breath at regular intervals throughout the day (especially when talking), his worsening balance, his decreasing stamina, the increasing difficulty understanding his speech.? At the beginning of the week, he started having pain at the back of his neck when he tips his head forward.? It could be chiari-related, but I suspect his tethered cord is more to blame & the action of dropping his head forward pulls his spinal cord, causing pain.? Big sigh. Joshua is so infinitely precious... so sweet & full of funny sayings... watching as he slows down heightens everything, and knowing that he won't be able to stay with us is so dang heartbreaking.? I wish I could come up with words to express what my heart feels, but I think maybe this is an experience that defies words. Today, I had two conversations with a coordinator from the Pacific Northwest Transplant Bank regarding the possibility that Joshua could be a candidate for organ donation. She accessed his medical records from Legacy Emanuel, then called me back to talk more. Bottom line is that Joshua is NOT ruled out as being an internal organ donor at this time. That was encouraging to hear since I would really like to be able to donate Joshua's organs/tissues after his death so that other children might have the opportunity to live. I want something good ~ tangibly good ~ to come out of his death, so my prayer since March 25, 2011 (the day we found out his condition was terminal) has been that he would be a candidate for organ donation. I had thought/been told he wouldn't qualify, but I felt prompted to call PNTB & the people I spoke with today ~ the ones who actually are in charge of evaluating a potential donor ~ told me differently, and that was after they'd looked up his medical history. While it's true that a person has to be brain-dead while their heart is still beating (which is why so many people who would like to donate their organs aren't able to BE organ donors ~ the circumstances of death have to fall within a specific criteria), I was told there ARE circumstances where a person isn't technically brain-dead but can still donate, and the anticipated manner in which Joshua will transition to heaven is such that he might be able to qualify for internal organ donation. If not, he could still qualify for eye & tissue donation. It's a lousy topic of conversation to have with a person, but I'm glad I had the talk today. It gives me hope that parts of Joshua could go on even after he dies, which is something that would mean a lot to my family & me.? Written April 19, 2012 1:49am by Kate Parker We've had a few craptastic days.Joshua's oxycodone was increased by 50%.? Despite the increase, he's continued to need extra pain medication in-between scheduled doses.? Dr. T called tonight & outlined the next steps we'll take for pain management.? I'm seriously disappointed that jumping his oxy up by 50% hasn't been enough to completely stop his hurting.? One thing that has become crystal clear to me is that, as brokenhearted as I will be when he dies, heaven will be a great place for Joshua if for no other reason than he will not hurt anymore.? How I wish I could give him a pain-free life here on this earth! He is now experiencing pain at the back of his head (where his chiari scar is located) every time he tips his head forward/down.? That motion pulls on his tethered spinal cord, so it's not really a surprise to hear that it hurts.? But honestly, hearing him complain of new pain despite the amount of medication he is getting is almost scary.? It makes me wonder just HOW BAD must this pain be to be registering through all of oxycodone, fentanyl, methadone & gabapentin he's on. Really, it boggles my mind.Much is happening with Joshua's little sister, Bethany, too, which further complicates my emotions & makes it more difficult to "deal" with each new thing that crops up with either child.? People say God doesn't give you more than you can handle & I would really like someone to give me the chapter & verse from the Bible where He says that.? I can't find it.? I've always believed God gives a person MUCH more than they can manage on their own so that they are forced to lean on Him in order to get through it, and I can find the verse, "I can do all things through Christ Jesus who strengthens me," in my Bible (Philippians 4:13), so I understand that yes, things are going to happen that I don't feel I can deal with, but with God's help, I *will* make it through the tough times.? Despite that promise, however, I feel stretched to the point of breaking.? I read a friend's blog tonight & she described herself as feeling as though she could shatter into a million pieces with very little provocation.? THAT is exactly how I feel right now, as well.? I need a day or two of things going "right".? Of medical personnel doing their jobs without requiring a parent "babysitting" them to ensure it gets done.? Of Joshua not hurting (and his sister's situation improving).? I need a break. Not from my children, but from the pain & other problems that plague them & are tearing my heart to pieces because I can't make it better.Sign My Guestbook | Read Tributes Written April 15, 2012 1:05am by Kate Parker On Tuesday, I met with Dr. T, Joshua's palliative care physician, to discuss medications & my concern that methadone was causing Joshua to sleep excessively & was also keeping him very dopey when awake.? Dr. T saw what I was talking about just by observing Joshua & he agreed with me that the side effects of methadone weren't worth the benefit of using it during the day.? He told me to drop the two daily doses of methadone (we are keeping the midnight dose), then wait a few days to let Joshua's body clear out the residual medication, and then we would increase his base dose of oxycodone by 50% since Joshua seems to do pretty well with oxy & it doesn't completely knock him out.? I was thrilled to get permission to stop using extra methadone.? I know increasing opioids will eventually cause drowsiness regardless of which medication is used, but cutting out the daily doses of methadone will stave off the excess sedation for awhile longer & for that, I'm grateful.After the meeting with Dr. T, Adam, Joshua & I headed to the diagnostic center in the hospital to get Joshie's head CT done.? That turned out to be a 2-hour process because we had to wait... and wait.... and wait....and wait.... once we finally got in, the scan itself went smoothly, took just a few minutes, & Joshua did great at laying still.? Afterward, we headed upstairs to meet with Dr. W, our neurosurgeon.When Dr. W walked in, she asked, conversationally, "So what brings you back here?"? Joshua answered, "I want you to fix my back, please."? That sobered her up immediately & she sat down to begin what wound up being a very serious discussion. Dr. W told me repeatedly that she doesn't know what to do.? There isn't a huge benefit to be gained from doing surgery like there used to be ~ I mean, 2 years ago, when she did a surgery, it helped in a big way & everyone knew it was totally the right thing to have done.? Now, though, there isn't going to be that huge benefit.? She isn't even sure if anything she does will make a difference for Joshua anymore. That said, she doesn't want to do nothing.? She wants to help him live as long as possible ~ and as happily as possible, too!? In-depth evaluation of his functioning showed more deterioration of his brain stem functioning than I was aware of. He has right-sided weakness of his body, left-sided loss in his facial muscles (which answers why he can't yawn anymore & why his smile is lopsided now), & an abnormal Babinski reflex in one foot, which is indicative of corticospinal tract damage. His back is extremely tense/stiff, which Dr. W believes is the result of muscle spasms due to tethering. She & the geneticist believe Joshua is the only child in the world who has his combination of conditions; as such, there is no protocol to follow, which means Dr. W is guessing about what could happen if we do surgery just as much as I am. The meeting on Tuesday was more her & I bouncing ideas off each other than her speaking as "The Doctor" & me listening as "The Parent".? It was a different dynamic than usual & while I was comfortable interacting with her in that manner, the significance was not lost on me.? Toward the end of our meeting, Dr. W abruptly stood up & told me to come look at Joshua's scans with her.? It was a way to allow us to talk bluntly without Joshua hearing anything we said.? At the end of our private discussion, Dr. W said, " Well, back in November we were trying to keep him alive, right? So... let's see if we can keep him alive for a little while longer." I left the appointment with instructions to get an MRI of Joshua's back to determine how tethered he is & a promise that she would decide afterward what she thought she could do. I called central scheduling to ask if there was any way they could fit Joshua in for his MRI the next day so that we could get it done without having to go home & then drive back up.? After the guy listened to me explain the situation ~ our living 250 miles away & Joshua being terminally ill, so us needing to get the scan as soon as possible ~ he told me he'd figure something out.? As it turned out, they had a cancellation for 7am the following morning.? He asked me if I could have Joshua at the hospital at 6:15am & I told him, "Absolutely," while inwardly, I cringed at the thought of having to get up so early (I am NOT a morning person).? I thanked God for providing the appointment as I pushed Joshua's wheelchair to the van, though, because I truly was grateful that we could get the MRI while we were already in town.During the 45 minutes that Joshua was sedated for the scan, his respiration rate dropped to 6 breaths per minute (20 is normal for a child his age & 12-14 is Joshua's norm) & his heart rate dropped to 40 (his norm is 60-80).? I did not think to ask if his oxygen saturation dropped, as well, and the anesthesiologist only mentioned the respiration & heart rate when he came to get me after Joshua was in recovery.? By the time I got in to him, he was satting at 94% & his heart rate & respiration rate were back to his normal.? Jenny came in to re-program Joshua's LP shunt (the one in his back, not the one in his head), then told me she or Dr. W would call me the following day after they'd reviewed the scan & discussed things. After she left, the nurses told me that even though Joshua was still half-asleep, I could take him if I wanted to since I had an oximeter & oxygen in the event he needed some assistance.? I immediately lifted Joshua into his wheelchair & headed out because I needed to get home as soon as possible to drop Joshua off & pick up Bethany so that I could get her to the hospital 40 miles from our home for her Actemra infusion.? Thankfully, Joshie slept the entire drive home, so we made really good time.I didn't hear from our Dynamic Duo on Thursday as anticipated, which was frustrating.? When so much is riding on one decision, every extra hour of waiting to hear the answer is difficult.? Finally, I told God, "Okay okay, I get it.? In Your time, not mine."? I wish I could say I graciously let it go, but I didn't.? I just gave up & told myself, "Whatever.? You'll hear from them eventually.? Go about your life & stop fretting."? I heard from Jenny yesterday afternoon.? She told me that Dr. W is willing to attempt surgery, but they want to wait until things are worse before doing so. I know that sounds crazy on the surface, but it makes perfect sense to me & I told Jenny I completely understood their reasoning. The risks are substantial enough that before they attempt a surgery, they want to know Joshua is at the point that if they DON'T do something, he will probably not live more than a few more weeks. Charley & I are in agreement with that decision.? The way my husband & I see it is this:? if we were to do surgery next week & Joshua did not survive, we would feel horribly guilty because we are fairly confident that if we don't do surgery next week, he isn't going to die just yet.? He is still playful and happy for the majority of his awake hours & we do not want to take that from him or deprive ourselves and our other kids the time with Joshua.? If we wait until Joshua is at the point where all he's really doing is sleeping & then waking up needing medication &/or is completely miserable like he was at the end of October (when we knew we didn't have much time left with him if we didn't do something surgically), then it will make sense to try something once more.? If it works, fantastic ~ we could have more happy, quality time with our little boy.? If it ends his life, that would be heartbreaking, of course, but we could find some solace in knowing he didn't suffer.? For him to go to sleep after being hugged, kissed, prayed for & assured of our love and then to wake up in heaven really would be lovely for Joshua. If he did not survive surgery, Charley, myself & our other children would be spared from watching him get to the point where all he does is sleep & we wait for him to die but he has no quality of life while we wait. That would be incredibly difficult to endure, too.? Really, though, when you get right down to the bottom line, ANY way Joshua dies will be horrible for us, so what we pray is that however he dies, it will be peaceful for him because nothing else really matters in that situation.? I am not saying at all that I want him to die during surgery.? I absolutely, certainly do NOT!? If surgery takes place, I want it to be successful & to improve Joshua's quality of life so that we can spend more time with him.? BUT... if he did die during surgery, I would know it was a peaceful way for him to go & that would eventually bring some comfort.? If we do surgery & Joshua survives, but the procedure doesn't really help at all, we will know that we listened to his wishes & we tried.? That would help prevent any feelings of regret after he dies because we would know we did all we could for him.So... when Joshua gets to the point where he is sleeping the greater part of each day & he's pretty miserable when he's awake, I'm supposed to call Dr. W & Jenny and let them know. They can do surgery & it will hopefully be successful at buying us more time with Joshua, but if the worst occurs & he dies, no one will be left feeling as though we hastened his death by attempting a last operation. It's the best our Dynamic Duo can offer at this stage of Joshua's life & it's a decision that I both respect & accept.? I also believe it's the best decision they could have come up with.? I'm relieved that they don't want to do surgery right away & I'm thankful that they are willing to try again to buy us more time with Joshua.? They were successful in November & it's my prayer that they will again be successful when the time comes that we need to consider taking that step.? Above all, I am thanking God that we have the option of trying surgery again because as long as Joshua keeps saying he doesn't want to go to heaven yet, I want to do everything I can to keep him here.? If the day comes when he wants to stop fighting, I won't push him to keep going.? If he gets tired & says he is ready to go to heaven or that he doesn't want surgery, I won't force him to endure it.? While my family is happy to have the option of pursuing surgery as a way to potentially give us more quality time with Joshua, none of us wants to do it at the expense of honoring his wishes.? That, above ALL else, is a goal we never lose sight of.Sign My Guestbook | Read Tributes Written April 13, 2012 12:00am by Kate Parker I didn't hear from Dr. W or her P.A. today, so I will update again after I do.? Sigh.Why do doctors tell a parent, "We'll call you tomorrow," and then NOT call the parent?? Especially when it's about a serious subject... I wish they wouldn't assure me they'll call if they aren't going to.? Leaving parents hanging to twist in the wind as they await news is cruel.? Yes, I know something could have come up that prevented them from calling.? I know they may not be ready to discuss things with me just yet, especially after reviewing Joshua's MRI (I have a copy of it & it's not good), but ya know, I don't really care.? They said they'd call, which made me then expect they'd call, and I stayed home all day so I wouldn't miss their call, but then it never came.? They could have had their nurse call me to say, "Hey, they're still reviewing things but will get in touch soon."? Ugh.? This is so difficult.? Charley & I are waiting to discuss our options until we know which ones remain & we can't know that until we hear from Dr. W.? She won't be in the office tomorrow, but I am holding out a tiny grain of hope that her P.A. will call me & not force me to wait over the weekend.Written April 12, 2012 12:19am by Kate Parker I know I should write an update about how our trip to Portland went, but I don't have the words yet to give more than a synopsis.The head CT went smoothly.? The meeting with Dr. W was hard.? She wanted Joshua to have his spine scanned again, so I called central scheduling & after explaining the situation, they got him in for the MRI first thing this morning (we checked-in at 6:15am).? I also met with Dr. T, Joshua's palliative care doctor, & he tweaked Joshua's pain meds again in what we hope will be an improvement with regards to Joshua's sedation (ie: not make him so spacey & sleepy).During the 45 minutes of sedation for the MRI today, his respiration rate dropped to 6 (breaths per minute) & his heart rate to 40.? He hadn't received his 4am medications & the anesthesiologist hadn't given any medication that would depress his central nervous system, so having that happen was a bit unnerving, but he bounced back & was satting at 94% with a heart rate in the 70's & respiration rate of 12 by the time they brought me back to recovery to see him.I am supposed to hear from Dr. W tomorrow.? At this point, it's my intention to write a full update after she & I talk.? If I don't write it tomorrow, it will be soon thereafter, once I'm not feeling quite so raw.Sign My Guestbook | Read Tributes Written April 8, 2012 5:02pm by Kate Parker Once again, we are standing at a fork in the road of our journey with Joshua, needing to decide which path we'll take before we can continue onward.? Joshua does not want to sleep excessively or feel groggy when he's awake, but with increasing pain requiring increasing medication, increased sedation is the major side effect.? So what is causing his increased pain?? Right now, I believe it is his tethered cord putting downward traction on his brain stem.? He could also have scar tissue built up inside his head since it's been 5 months since his last chiari surgery & that could be contributing to his head hurting.? So what do we do about it?? That is where we encounter the choice of which path we wish to take.When we had to increase Joshua's meds & he started sleeping a lot more, he expressed clearly that he did not like it.? He asked me why he was sleeping so much.? I told him it was because I had to give him more medicine to help his head not hurt.? He asked why his head was hurting more & I explained how his spinal cord is stuck with scar tissue & that causes it to tug his brain downward, which hurts.? He asked if Dr. W could fix his back.? I admit, that question shocked me.? After months of hearing Joshua say he is never having surgery again, the last thing I expected was to hear him ask for his neurosurgeon's help.? To answer his question, I told him the truth ~ "I don't know."Interestingly (coincidentally?), our pediatrician had called me the day before Joshua & my conversation to discuss the conversation she had had with Joshua's palliative care doctor & where we were going from here with regards to his pain meds, & a portion of the conversation had involved the topic of another surgery & whether it was something that should be pursued as a treatment option. I was urged to call Dr. W to inquire what her opinion was regarding attempting another surgery.? I did not think I was going to do it, but after Joshua asked me if Dr. W could fix his back, I decided to make the call.As a result of that call, I am heading to Portland tomorrow.? Joshua will have a head CT to evaluate how his VP shunt is working and then he will see Dr. W.? She & I will discuss what surgical options she feels are possible, if any, & we'll make a decision about which path we're going to choose based on the results of that meeting.Historically, Charley has let me make the medical decisions for the kids ~ I was pre-med in college & love medicine, so my knowledge base for our kids' medical conditions is broader & deeper than his ~ but with these life-impacting decisions to be made, he has joined in the conversations & shared his opinion.? If we do nothing, Joshua will continue along the path he's currently on.? He will continue to need increased doses of pain medication & it seems that he could get to the point where he sleeps the majority (and, eventually, all) of each day. This isn't what he wants.? What he does want is for us to figure out a different way to help him, and the only option that might be available is surgical in nature. If Joshua still did not want surgery, we would not be considering it.? But he does.? He has asked multiple times this past week if Dr. W is going to fix his back & has told us that he hopes she will.? As such, I will pursue investigating this potential pathway. If Dr. W believes there is a surgery she could do that has the potential to help Joshua in the same way the surgeries he had last November did, then we will have her do it.? We realize that a surgery has the possible outcomes of success, failure or no change at all.? Success would be seen as Joshua's requirement for increased pain medication being slowed so that he does not need to be overly sedated any time soon.? A successful surgery would allow Joshua more time to enjoy the activities he wants to participate in. Since he is happy when he's not hurting, his quality of life is still worth trying to maintain. Failure would be any bad outcome, & yes, we are aware that there are some very real risks to be considered.? Ultimately, though, the way we see it is that if Joshua were to die during surgery, it would be painless & peaceful for him ~ he'd be hugged, kissed, told he was loved & then he'd go to sleep in the hospital & wake up in heaven.? That really would not be a bad thing for him, though it would be awful for the rest of our family.? I told Charley that if we attempted a surgery & Joshua died, I think I would struggle with feeling like we shortened his life.? He asked me, "Okay, what will happen if we don't do surgery or anything else?" I answered, "He'll most-likely continue needing more medication as things got worse with his tethering & brain stem dysfunction & compression."? Charley's response to that was, "Well then, what do we have to lose?"? When I thought about it, I realized what he was saying.? Yes, it would be horrible to attempt a surgery & lose Joshua because of it, but we're going to lose him, anyway. If nothing changes, Joshua is on the road to where he will eventually sleep around the clock before he dies.? If Dr. W offers to do surgery, the opportunity to "reset the clock" (ie: buy him more time) exists.? And though some people will not understand why we would want to do that & some will see it as us committing Joshua to more months of pain as we refuse to accept his inevitable death, I know Joshua better than anyone else on this earth & I have to live with myself (and Charley with himself) & the decisions I make for him, so I am going to do everything I can to make ones that won't torment me for the rest of my life. While I don't want to be a parent who refuses to let their child go peacefully when it is obvious to everyone around them that the fight should be over, I know we are not at that point yet.? I have a little boy who laughs & plays with his siblings & enjoys his life, restricted as it may be. Yes, he needs copious amounts of medication to maintain him at a "good" place, but we can still do it the majority of the time. I have a little boy who is asking if his neurosurgeon can fix his back so that he won't sleep all the time from needing increasing amounts of medicine to make his head not hurt.? I have a little boy who has flat-out said he does not want to go to heaven yet. As his parents, how can Charley & I NOT try to honor his requests?? I don't know if Dr. W is going to have any surgical option that she feels is worth attempting.? I could go into her office on Tuesday only to hear her say that surgery is too risky & she doesn't believe Joshua would potentially benefit enough to make it worth trying.? If that happens, then there's no decision to be made, obviously, and the benefit of having had the appointment would be that Dr. W could explain to Joshua why she can't fix his back.? He would know that the decision to not do surgery was not mine or his father's.? Maybe that would help him to accept medication ~ and the resulting sedation effect ~ as the only available treatment option.? On the flip side, I could just as easily hear Dr. W say that she could try one, two or three different things & what would I like to do?? This whole situation carries some potentially-huge consequences & I can see pros & cons to every option available, which makes choosing the right thing to do agonizingly difficult.? When there are no easy decisions, no "good" options, how does a parent know which is the best of the bad choices to pick?? It's what I have been wrestling with. Instead of seeking out the opinion of others, I have been spending quiet time praying that God will use His Holy Spirit to give Charley & me wisdom & a knowledge of what He wants us to do. I want peace, not a spirit in turmoil, as I face this upcoming appointment & the decisions that will result from it.Sign My Guestbook | Read Tributes Written April 5, 2012 9:11pm by Kate Parker We've spent the past week tweaking Joshua's pain meds after he spent a couple of days being extremely distraught over sleeping for the majority of each day ("each day" meaning 24 hours, not daylight hours).? He made it very clear that he does not want to sleep all day long, even going so far as to ask me to wake him if he didn't wake up by himself and thanking me after I woke him one night at 9:30pm (he'd slept from midnight to 3:30pm, then had fallen back to sleep at 4:30pm until I woke him).? Dr. S, Joshua's pediatrician, saw him in her office & agreed with my request to lower the dosage on one of his meds (methadone).? By the next afternoon, I knew we'd lowered it too much because while Joshua was awake, he was needing a lot of extra doses of oxycodone to keep him comfortable.? I informed Dr. S & asked if we could go back up on the dose by 25%. She agreed & that's where we've been for the past few days.? The combination we're using now seems to be a good mix ~ Joshua is not sleeping the bulk of each day & he's predominantly happy & enjoying life when he's awake.? Any breakthrough headache is fairly-easily controlled with an extra dose or two of oxycodone.? Most importantly, Joshua is not feeling stressed-out by being so sedated that he misses out on daily life.? His quality of life is good again.Joshie told Megan, Adam & me that he is not ready to go to heaven yet.? He assured us that he will send rainbow-colored butterflies when he goes, but he doesn't want to die yet.? In-keeping with our desire to respect Joshua's wishes, we are doing our best to ensure that he remains able to do the things he enjoys.? As things progress, it's becoming more of a challenge (such as trying to keep his pain under control while minimizing the sedation effect), but since Joshua is not ready to stop fighting, neither is anyone else in the family.?? Written March 28, 2012 1:07am by Kate Parker Sigh...? Some stretches on this journey are so smooth I can glide along without much thought, relaxed & able to admire the scenery as I go.? Other stretches are a bit bumpier, with an occasional patch of gravel marring the road & requiring some avoidance maneuvers lest I fall down.? I make my way around the gravel & feel pretty good about my ability to stay on the road despite less-than-perfect conditions.? And then, suddenly, as I round a bend, I am sideswiped by a bus that shoves me into a ditch on the side of the road.? Bruised & dazed, I climb out & slowly begin walking again, only to fall into a pothole that I didn't see right in front of me.? Righting myself once again, I survey the path in front of me before taking another step & am dismayed by what I see:? sinkholes everywhere, boulders littering the roadway, and enormous storm clouds rapidly approaching.? Glancing both right & left, I realize there is nowhere to take cover, and attempting to move forward strikes me as foolish & just asking for further injury. I want to move off the road & wait for the storm to pass, but know that if I continue moving forward, I will get through it faster. Yes, I know I'm going to get wet, as there is no place to hide from the downpour heading my way, but I attempt to make my way along the road, anyway, trying to navigate despite my limited visibility.? My prayer as the rain starts hitting me is that God will move the storm quickly & guide me along the safest route, & that there will be a smoother stretch just up ahead once more.Joshua's pain control regimen has been changed.? Methadone has been almost doubled.? Oxycodone slightly decreased.? Fentanyl & gabapentin remaining the same.? The result?? Controlled pain once again.? The price for this control?? Increased sedation ~ more sleeping, more "dopeyness" (like my made-up word?) during his awake hours.? The increase in his pain represents the bus that sideswiped me into the ditch. I just didn't see it coming. The change in his pain meds represents the pothole that I should have seen, but totally didn't.? I should have anticipated the increased sedation, but for some reason, it didn't occur to me.? Or maybe I just forgot.? Regardless, the emotional impact is the same.Joshua is NOT happy about the changed meds.? He doesn't like feeling sleepy all the time.? He does not want to "sleep all day".? I told him that I understood & I was really sorry, but when he hurts more & we have to give him more medicine, it will make him sleep more. There's nothing I can do to stop that from happening. Well... maybe.? I mean, I can't stop it from happening, but maybe I can postpone it for awhile longer.Technically, there may be something we can do... something suggested to me by our pediatrician at the encouragement of the palliative care doctor & something that Charley & I agreed to try after talking to Joshua (he gets a vote since it's his life), Megan & Adam (they get a vote because they're adults in our immediate family) & a few trusted friends (because a wise man has many counselors), but it's being discussed by Joshua's medical team to determine if the risk-benefit ratio makes it worth trying.? At the risk of irritating people, I'm not going to explain what the "something" is unless we decide to move in that direction.? It's one of those things that will be controversial & I don't have the emotional stamina to face negativity over something that may never come to pass. So why bring it up at all?? Because it's a big deal at my house right now & I'm keeping this journal so that I can come back & read it again someday, so I want to make a note of it for myself to remember at what point it came up.Joshua continues to be happy when he's not hurting, but the increased sedation makes him more quiet & less "with it" when he's awake.? It also causes him to sleep more.? That is the rain pelting me, cold & stinging.? This storm hurts.? I can't huddle on the side of the road doing nothing. I want to cradle Joshua in my arms & run through the rain to get past it as quickly as I can, but the terrain is rough & uneven & I don't know exactly where I'm going & I won't risk dropping my precious son, so I'm forced to slow down & pick my way around obstacles, instead.? All the while, the rain doesn't let up & we're both getting soaked.? It's pretty miserable.I know there's blue sky & sunshine somewhere up ahead.? My biggest prayer as I navigate this lousy part of the journey is that Joshua will get to enjoy happier days with me (and the rest of our family).? I can't keep moving through this downpour without believing it's possible.Sign My Guestbook | Read Tributes Written March 25, 2012 6:56pm by Kate Parker It's another day of multiple extra doses of pain medication.? Joshua ended up taking an 8.25 hour "nap" yesterday, then woke for an hour & then was back to bed for the night.? He's telling us that he has two cramps in his head & it hurts either "medium" or "lots".? Dose upon dose upon dose of oxycodone isn't knocking out his pain.? I've emailed our pediatrician for advice & direction about what the next step is.Today marks 1 year since I sat down with our geneticist & learned that Joshua had two chromosome abnormalities, one of which is incompatible with long-term survival.? One year has elapsed since my world was rocked.? Before March 25, 2011, we (my family & his medical team) believed that Joshua had a mix of conditions that would require multiple hospitalizations & surgeries throughout his life, but he would grow up & have a normal (with some modifications) life.? My meeting with Dr. A changed all of that & with our discussion came the realization that Joshua would never grow up, never graduate high school, never go to college, never get married, never be a father.? We would not get to see him as an adult... we would not know what he would look like, how his voice would sound, what interests he would have.? All of the anticipations/expectations that parents have for their children ~ all of those "firsts" that parents generally assume will happen one day ~ were stripped away one year ago.? Instead, we joined the ranks of parents facing the death of their children & we were promised membership into a club that we never wanted to join ~ those who have had their child die.No one has ever been able to give us a road map for Joshie; instead, the consensus for the past year has been that our little boy is writing his own book.? I've been forced to learn how to let go of my driving need to know what is going to happen next.? I still like to be as prepared as possible, but this past year has taught me that sometimes, I need to just sit back, trust God & realize that He has a situation under control.A year ago, a new diagnosis blew apart our world.? As emotionally taxing as this past year has been, though, I can still say I am thankful that we learned about Joshua's chromosome abnormalities.? Having a definitive diagnosis that tied all of Joshua's "issues" together gave us some peace of mind.? We no longer had to wonder WHY he was having so many problems.? For the past year, we have known, and despite it not being a good (ie: fixable) diagnosis, it has been beneficial having it.? If nothing else, knowing that Joshua has a terminal condition has enabled my family to readjust our priorities & spend time doing the things that actually matter over the past 12 months.? I guess that's the silver lining of March 25, 2011.?? Sign My Guestbook | Read Tributes Written March 24, 2012 11:09pm by Kate Parker It's been an up-and-down week for Joshua.? He has continued to need some extra doses of oxycodone each day, which isn't too bad, but today has been a very, very hard day.? He's needed at least one extra dose between every scheduled dose (twice, he needed 2 extra doses between his scheduled doses).? Joshua said that he had two cramps, not just one, in his head.? He wanted me to make him feel better.? I did my best, giving him the maximum amount of oxycodone possible as often as I was safely able to give it.? When it wasn't enough, he cuddled up in my lap with his pillow & blanket and went to sleep a bit after 4:30pm.? As I write this at almost 10pm, he's still sleeping.? It's sad to know he went to sleep as an escape from the pain, but I'm thankful he has that escape.? While he sleeps, we feed & medicate him per his usual schedule.? I'm hoping he'll wake up for a bit at some point tonight so he can empty his bladder (he has to crouch to do it).? If he stays asleep, I'll just cath him, but I'd rather he woke up & went on his own.? It would allow me to assess how his head is feeling, too.Having this kind of day so soon after increasing his methadone is discouraging because what usually happens is we increase the methadone & that eliminates our need to give PRN doses completely for weeks.? This time, though, it didn't happen.? I am hoping that tomorrow will be better.? Joshua has had times when he has a very bad day followed by many good days, so I am praying that tomorrow will be a complete opposite of what today was.? In other, Joshua-related news, he saw his pediatrician yesterday.? He's lost 2 pounds in the last 3 weeks, so I am increasing the amount of formula he gets via g-tube feeds (just adding another feed per day).? He'll have an EEG this next week, too, to evaluate the seizures that he seems to be having.? I don't plan to put Joshua on any more anti-epileptic medications (he is already on one) since the cause of any aberrant electrical activity in his brain is most-likely neurons dying as a result of increasing pressure.? As such, medication isn't going to fix anything; it would just sedate the heck out of a child who is already sleeping more than his fair share of any given 24-hour period.? However, his doctor still wants us to do the EEG, so I agreed to it since it's non-invasive.To end this on a happier note, let me share about Joshie's newest friend.? Bee is a small stuffed animal with a zipper compartment that we have to keep filled with chocolate candy (yes, "have to" ~ Joshua will ask us to "make Bee fat again" when Bee runs out of candy).? A couple times each day, Joshua will unzip the compartment & take out a piece of candy, telling us that it is Bee's snack time.? He'll pretend to give Bee a few bites of chocolate & then announce that Bee is full, so he gets the rest. He shares Bee's snacks, too ~ even with his pediatrician yesterday! He carries Bee around wherever he goes & when he needs both hands to do something, he sets Bee in my lap for safekeeping.? It's adorable.Written March 20, 2012 12:13am by Kate Parker Increasing Joshua's methadone did not give us the improvement we were seeking, so I'll be calling Dr. S tomorrow to ask her what we do next. It's pretty sad when a 6 year old says, "Oh, by the way, my head has a bad cramp & hurts," in the same way you'd expect to hear a kid mention that they were out of clean underwear. He is so resigned to hurting... so accustomed to it... and that makes me profoundly sad.He's rarely eating or drinking anything anymore & often says that whatever he did eat makes him feel "not good" even though he ate only a few bites.? Thankfully, he is still tolerating his g-tube feeds without any problems, so I've made adjustments & am feeding him more formula & water to compensate for the calories & fluid he is not getting by mouth anymore. A few minutes ago, he fell off the cube chair he was sitting in (it's a therapy chair with the seat about 6 inches off the ground & sides that wrap around and support a child's torso). How? Just lost his balance & slipped off the seat.He randomly drops things he's holding & is surprised that they fell out of his hands.There are too many "little changes" to ignore... they all point to deterioration, which is just really, really hard to see.Please keep praying for Joshua ~ for his comfort & for good pain control & for him to continue tolerating his g-tube feeds. We know he's going downhill, but we so want him to remain happy as he goes.? I have no idea if he has 2 days, 2 weeks, 2 months or 2 years remaining before he goes to heaven, but what I want most while he's still here is for him to not suffer.? It's hard enough watching my son decline; my prayer is that God will spare my family & me the heartache of seeing Joshua hurting & not being able to take that pain away.? If we ever get to the point that we simply cannot control his pain with oral (or g-tube, rather) medications anymore, we will admit him to the hospital & give him enough IV medication to get him, and keep him, completely pain-free.? I don't ever want to have to do that, though.? Joshua wants to die at home, surrounded by his stuffed animals & his family.? He doesn't want to be in the hospital.? We want to honor his requests if at all possible, but the one thing we all are in agreement on ("we all" being Charley, Megan, Adam & me) is that if staying home means Joshua would die an agonizing death, we aren't going to let him stay at home. Aside from not wanting him to go through a painful demise, none of us wants to live with the memory of watching Joshua die in pain. So... if you are praying for him, please join us in praying that God will make a way for us to maintain good pain control such that Joshua can continue to decline slowly until he peacefully passes away at home (hopefully not any time soon).Sign My Guestbook | Read Tributes Written March 16, 2012 7:46pm by Kate Parker The past couple days have been tough on Joshua.? More pain (he describes it as a "cramp in his head"), more need of oxycodone, one day spent sleeping all but 3 hours.? Not fun.Our pediatrician spoke with Joshua's palliative care doctor & the recommendation is to increase his methadone by 10% since it has helped in the past with getting Joshua's pain under control.I don't have any profound words to write.? I just wanted to make note of this change.Sign My Guestbook | Read Tributes Written March 14, 2012 6:10pm by Kate Parker Yesterday afternoon, the kids & I did a balloon release in honor of a sweet little boy named Brent Ritterbusch who had bravely fought mitochondrial disease & hemophagocytic lymphohistiocytosis for almost 6 years before going to heaven on Friday, March 9th.? His funeral was yesterday.? Talking about Brent being in heaven & then doing the balloon release led to Joshua & I having one of our late-at-night conversations.It began with us talking about the balloons we'd sent up to heaven for Brent & quickly segued into a discussion of how sometimes God sends a special sign to let people who aren't in heaven yet know that a person they love who is in heaven is okay.? Joshua liked that idea a lot, so I asked him, "If God would let you send a sign to people who aren't in heaven yet so they would know you're happy & okay, what do you think you'd send?"? Joshie thought for a moment, then thoughtfully answered, "Butterflies."? "Butterflies?? Really?"? I asked, and he repeated it more confidently, "Yes, butterflies.? They are pretty and they have wings that can break."? I agreed with him, saying, "Yes, I know; you can't touch butterfly wings because the oil on our fingers damages them." Joshua asked, "What happens if they get broken wings?"? I paused, then told him, "Well, I think they just walk around a bit, but then they die because they can't fly anymore."? He wanted to know what happened after they died, so I told him that they would be in heaven, too (no, I don't actually know what happens to butterflies).? "But what happens to their broken wings?"? I assured him that God would fix them... that God can fix anything... and that made my little guy happy.? He was quiet for a minute, then asked, "Do butterflies land on people?"? I told him they could, but I don't think it happens very often and that I've never had a butterfly land on me."? Again there was a pause as Joshua thought about my answer, then he announced, "I think I'll send a butterfly to land on you."That was the first indication he has ever given that he might understand that I am not going to heaven at the same time he is.? We have never told him that we would be going to heaven together; we've just assured him that he would not go alone.I snuggled Joshua closer to me as I told him, " I think that would be beautiful."? Then, suddenly, his voice grew louder & stronger with barely-contained glee as he told me, "I think I'll send sad faces to everyone else!"? "What?" I was utterly perplexed.? "I'll send sad faces because everyone will think I'm sad but really I will be happy, so it will be a joke!"? He was thrilled by the idea & got into a fit of giggles as he contemplated sending people on earth a bunch of sad faces as a joke.? All I could envision were those yellow smiley-face balloons/signs when he was talking about sending sad faces.? It made me wonder if there are yellow sad faces, too.? Megan said that if we see a sad face cartoon or balloon or whatever in some random place after Joshua dies, she will know it's a sign from him. I asked Joshie if he thought he would be happy in heaven, to which he answered, "Yes. I get a new body. It's gonna be GREAT!"? I'm not sure if he was referencing heaven or the glorified body he will be given in heaven when he said it would be great, but either application is appropriate.? [Update:? I asked Joshua what he meant and he said he was referring to the new body he is going to get.]More & more, the kids & I are chatting about heaven as a part of our normal conversation throughout the day.? We're talking about topics such as how, when a person who has accepted Jesus dies, they don't really stop living ~ instead, they make a transition from living here on earth to living in heaven with God, where everything is so much better than here.? I want my kids to be comfortable with heaven & to look forward to going there rather than fearing dying one day.? I want them to realize that the place their brother is going is a good place & he will be happy there while he waits for us to join him. I think we all benefit from being reminded of that.Written March 9, 2012 9:46pm by Kate Parker Sometimes I find it incredibly difficult to put into words what is going on with Joshua.? Simply put, some changes defy easy descriptions.? It would be easier to tell myself, "Okay, I've noticed that... and that... and that," & then move on, but I know that the day will come where I forget when "that... and that... and that" began & I will wish I had written it in this journal.? So I will try to explain what is different now.I feel like I need to preface this by saying that I rarely write about new things until I am fairly certain that a new "thing" is a change that is sticking around.? So on the first day that Joshua had difficulty yawning, I didn't say anything because I didn't know if it was because he was having an off day or what.? When he had multiple days of having trouble yawning, I wrote about it to acknowledge that it was a definite decline.? When I say that he's been having problems in some area for a week or for two weeks, yet I haven't mentioned it in any journal entry during the past week or two, it is because I either haven't realized yet what is happening (some changes are more obvious in hindsight ~ you don't realize that what you've been seeing is significant until it has been happening consistently for awhile) or because I'm not certain that what I'm seeing is permanent.? For example, Joshua had increased pain for a few days a couple of weeks ago.? I was giving him multiple PRN doses of oxycodone each day & I wondered if we were going to need to increase his meds & if this was a sign of further decline. At the same time he was needing extra pain medication, however, he was fighting a cold virus, so instead of journaling that Joshua's pain was increasing, I waited to see if he would go back to baseline after the virus was gone.? He did, so I never mentioned it here.? I don't want to be confusing, so I try very hard to get the information correct.? So!? Is all of this babbling leading to a point?? Yes, actually.? The point is, if I write that Joshua's been having trouble with something for X amount of time but have failed to mention it in previous posts during that time period, there's a reason for it & it's not a sign that I'm being dishonest or exaggerating.? I'm not.? On either count.? Watching my child decline toward death is dramatic enough ~ I don't try to intensify anything for attention, contrary to what some might think (and if you're one of those people, I encourage you to avail yourself of the little red "x" in the upper right-hand corner of your screen & end your frustration).So.....Joshua's latest head pain is described as a "cramp".? It's not the same as the "ball" pain.? It's located directly over his VP shunt.? What is causing it?? No idea.? I asked & was told that since we aren't doing any more surgery, let's just keep Joshie comfortable & not worry about figuring out what, specifically, is causing the pain.? Thankfully, extra doses of oxycodone take away the cramp.? In the last week, Joshua's walking has changed.? The best way to describe his new gait is to compare it to a potty-training toddler who has had an accident. In that situation, the kiddo adopts a wide-legged stance & squats a little bit as they walk, attempting to get the wet away from themselves.? Emily's description was, "He looks like a cowboy who is waddling."? My guess is that the gait changing is a direct result of Joshua's spinal cord being tethered. We're seeing more signs indicating that it's becoming a problem.He has a 1 inch wide & roughly 4-5 inch long indentation in his lower back along his spine caused by the scar tissue inside his back pulling inward on the surrounding structures, which tugs at his skin & makes it look "sucked in".? He's having more difficulty urinating & producing a bowel movement.? He has to be in a squatting position in order to pee.? He used to just go (he's still in diapers), then he needed to squat first thing in the morning but could be in any position during the remainder of his awake hours, and now he has to be squatting if he's going to be able to pee.? I suspect that this could progress to where I will need to cath him regularly again. I will pray that Joshua once again loses all sensation if we get to that point because otherwise, it will be torturous to have to cath him every 4 hours (he regained some abnormal sensation after being detethered in November, 2009, which made cathing excruciatingly painful; as such, I now cath him only when absolutely necessary).? We're steadily approaching the point where enemas are going to be back in our routine (like cathing, we were able to stop using enemas after the detethering in November, 2009 & placement of the LP shunt enabled Joshua to regain some sensation & the ability to void without help).My biggest concern regarding the tethered cord is the downward traction it places on his brain stem.? That, obviously, is a no good, terrible, very bad thing.? I can't help but think that Joshua's cord being tethered will contribute to shortening his life (I know, I know, he'll have as many days as God ordained for him) & it makes my chest ache to know Dr. W would gladly detether Joshua again if only he were willing.? Logically, I know that detethering his cord would probably not make a huge difference ~ his brain stem is going to continue deteriorating regardless of what we do or don't do & he might not even survive another surgery at this point, anyway... and asking him to endure another operation when I know it would mean another month or more in the hospital & away from his daddy & siblings would be cruel to everyone in our family ~ but what my head thinks & what my heart feels are sometimes vastly different!? Reconciling the two can be a challenge for me.? Bottom line, though, is that I committed to honoring Joshua's wishes & I'm not going against that.? This is his body, his fight.? I will do everything possible for him as long as it doesn't go against what he has made clear he does & does not want.? Honestly, it's one of the hardest things I've ever had to do.? As a mom, everything in me screams to DO SOMETHING!? It's agonizing knowing there ARE things we could do, but they probably wouldn't help much & would really only guarantee Joshua more weeks or months of pain.? I thank God for giving Joshua wisdom to know what is best for himself & I thank God for giving me the strength to respect my child's decisions.? I'll admit, in the past, I have read blogs where parents chose to let their terminally-ill child lead the way & respected the child's decision to not pursue further treatment, and I thought they were crazy.? I could not fathom WHY an adult would listen to a young child who couldn't possibly understand the choices they were making or the consequences of those choices.? Ha ha ha... joke's on me.? As usual, the phrase, "There but for the grace of God, go I," is apt.? I should learn not to be so judgmental because dang, God always gives me the opportunity to learn first-hand and this is something I REALLY would have been happy to never experience!? Seriously though, I now understand what those other parents were doing & it makes perfect sense to me now.? From my perspective, I spent 5.5 years doing everything I could to help Joshua live the best life he possibly could.? I made the decision to put him through 29 surgeries & 100+ other procedures (yes, Charley did, too, but I'm speaking about my perspective only).? I did not consult my child & ask if he wanted to have his head or back or leg or chest or abdomen cut open, or another MRI or another blood draw.? I didn't ask him if he wanted to take medications. I weighed the pros & cons & ultimately decided what was in Joshua's best interest.? He had no say in the matter until it became clear that he was not going to have a normal lifespan.? Slowly, as his world has grown smaller, it has been natural to give him more control over the things we are able to ~ things like when he wants to sleep, what he wants to eat, what activity he wants to do, and what treatments he wants to do.? There are still some non-negotiables, such as port flushes.? He hates 'em, but they're mandatory to keep his port from clotting & being useless, so we do them because even though Joshua doesn't want to go to the hospital anymore, there remains the possibility that we will eventually need to utilize IV medication for pain control & we'll want his port to work for that.? Anyway, the point I was trying to make is that I understand now why parents would give up control of medical decisions to their very young child.? Joshua understands what is going on with his body; maybe not in technical terms, but he knows how he feels.? He knows what hurts, he knows what helps, and he knows he is going to go to heaven no matter what we do.? As such, I can give him control over most of the decisions in his life because there aren't any long-term repercussions to consider like there are with kids who are expected to grow up & become independent adults.? It's definitely not how I began parenting my little guy.? It's not how I parent any of my other kids, either (a fact that probably disappoints them at times, LOL).? And no, none of the other kids are? resentful of Joshua, probably because they all know the reason he gets to call the shots in his life (for the most part) is because he's dying.? Nothing to be jealous of there.Okay, so.. wow, I totally got off-track!? Let me see if I can get back.? LOL? The other, more-concerning "thing" we're seeing every day is forgetfulness.? I don't know what to call it, actually.? I don't know if it's "short term memory loss" or "processing delays" or what.? The proper terminology eludes me.? What we are seeing manifests as Joshua not knowing how to do the next step in a well-known process.? For example, he opens a mini Reeses peanut butter cup, then holds out his hand with the wrapper & asks, "What do I do with this?"? He gets instructed to put it in the garbage & will pause, thinking, before beginning to move.? Sometimes he takes a few steps, then gets stuck & has to be reminded where the garbage can is ("Go into the kitchen, Joshua.").? Other times, he seems to forget where the kitchen even IS & will need verbal prompting to find the room, even when he is standing just 5 feet away from his destination!? Then, after he throws the wrapper away, he will come back to the family room, unwrap another Reeses peanut butter cup & once again ask, "What do I do with this?"? It's not a game.? He isn't giggling or joking.? He isn't playing that he doesn't know where the kitchen is or where the garbage can is.? He is sincerely perplexed each & every time he has a piece of trash in his hand because he can't figure out what to do with it.? The same thing happens with other objects (toys, shoes, etc), too ~ he'll hold out a spoon & ask me, "Where do I put this?"? He can't remember where things go even though they're objects or routines he has had for years.? I don't know what is causing it.? I don't even know what to CALL "it"!? But whatever it is, he's been doing it for a few weeks now.? I don't think it's getting worse, but it's more obvious to the adults in the house because we finally realized it was happening & then we began actively paying attention & were shocked by how frequently Joshua was unable to recall where something belonged.? If I had to guess, I would venture that his brain stem isn't processing information as effectively as it used to & it's not allowing his brain to send out messages 100% of the time (some signals get lost because of the deterioration of his brain stem).? If that's not what is happening, then I have no clue.? It doesn't really matter, either.? It's not something we can fix.? It's just something to recognize & make note of.? It is disturbing, though.? I can't lie & pretend it's not. Every sign of further decline takes my breath away until I remind myself that Joshua is still here, still predominantly happy, and still enjoying his life.? Then I remind myself that God is still here, still in control, not at all surprised by what is happening, and then I am able to relax again.? Yesterday, I was blessed to spend a good chunk of time with the hospital chaplain who has become a special friend through Joshua's numerous hospitalizations.? During the course of our conversation, he painted a word picture for me of God as a mother hen, gathering her chicks under her wings to provide comfort & safety during a storm (there are many Bible scriptures that speak of man taking refuge in the shadow of God's wings ~ Psalm 91, for example).? Chaplain Merv told me that God has Joshua under His wing & He has me there, too (and the rest of my family), keeping us safe. It was wonderfully comforting to me & is a mental image I will hold onto in the days to come. When I got home from Portland today, there was a package from another special friend ~ a birthday gift (my 42nd was on March 5th) ~ and one item in the package was a magnet that says, "TRUST" along the left border and has the verse "I will take refuge in the shadow of Your wings," (Psalm 57:1) on the body of the magnet.? What a coincidence, eh?? Yeah, not so much.? More like God trying to tell me something!? He wants me to run to Him during the painful, scary & difficult times in my life.? He wants to shelter me, protect me, comfort me & provide for me.? All I need to do is let Him!God shows me that He is merciful & loving as He keeps me surrounded by people who love, affirm, support & encourage in ways that resonate deeply within my heart.? If I had to walk this road without any other human contact, I could because I know I'm never truly alone (since God is always with me), but He knows that having companions to walk with makes the painful portions of a journey bearable, & He is so gracious to ensure that I don't have to be physically, emotionally, spiritually, or mentally alone.? That is what enables me to keep going each day & I am so, so, SO grateful to God for His provisions & direction, especially when the path is beginning to get more rocky.? It is my hope & prayer that what we're seeing with Joshua is a small decline that will be followed by another plateau period of relative stability, but of course I have no way of knowing what lies ahead.? Instead of fretting unnecessarily, I am taking refuge in the shadow of God's wings (not literal wings, by the way.... it's a figure of speech) & trusting in the One who is in control.? It truly is a comforting place to be.Sign My Guestbook | Read Tributes Written March 4, 2012 8:24pm by Kate Parker Joshua's party yesterday was everything I had wanted it to be and more.? I don't think it could have been any more perfect.? The picture to the left was one taken at the party.? I think it speaks to the joy of the day for Joshua.? Truly, it was a wonderful event & I am sure the memories made will be forever cherished by all who attended.Unfortunately, there are a few new developments to report.? Joshua is now unable to yawn.? The muscles of his mouth just don't work properly to allow him to open wide & stretch anymore.? He tries, then announces, "I'm having trouble yawning."? Instead, he opens his mouth about halfway, sticks his tongue partway out, and does a modified yawn.? I've tried it & found it to be utterly unsatisfying.? As silly as it may sound, I feel really sad for my little guy that he can't open wide & let loose with a big ol' yawn when he's tired.? It's one of those things that you realize means more than you thought once the ability to do it is gone.He is also having more episodes that appear to be seizures.? I had four people approach me separately at the party to ask if Joshie is having seizures now & to describe what they had seen, and two medical professionals told me they thought it was seizure activity they were watching, so... I think that is what we're all witnessing.? We haven't done an EEG since the end of December, 2010, & I don't know that we will (it's kind of one of those "what's the point?" things), but I'll check with our awesome pediatrician to get her opinion.? I don't know whether or not we'd treat seizures, anyway, so I'll defer to the experts about that.One of our therapists who attended the party summed up Joshua really well when she said, "He's declining, but he's happy as he goes."? The adults who were part of the discussion were all quiet as we thought about that statement for a moment, then we all agreed that yeah, that really is how things are, and really, if Joshie is going to have to decline, this is the best way to have things happen.? Having seen him decline while his pain increased, I can emphatically state that I would MUCH rather he lose skills & strength while still being able to smile, laugh & enjoy what he CAN still do.? I mean, obviously, I'd rather he not decline at all, but since that isn't an option, I do believe God is blessing both Joshua & our family by allowing Joshie to slowly slide downhill while maintaining the ability to be happy & enjoy life to the fullest that he can each day.? We really can't ask for more than that.Sign My Guestbook | Read Tributes Written March 3, 2012 12:23am by Kate Parker Joshua's birthday celebration has been tremendously fun so far!? He opened gifts from his siblings today & will open gifts from his daddy & me (and some extras sent by loving Aunts) tomorrow.? He's very excited for his party.Charley, Megan & I spent several hours tonight decorating for the party.? What we've done to turn our living room into an underwater aquarium is, by far, the most-extensive decorating ever (for us).? We all agreed, however, that Joshua is worth it & this birthday celebration will be one to remember.The picture attached to this entry is a preview of what tomorrow holds.? It is going to be spectacular!?Written March 2, 2012 2:01am by Kate Parker Today is Joshua’s 6th birthday.? There are many stories I thought about sharing on this very special day, but I decided this one was especially appropriate:Six years ago, at almost 11am, Joshua came into the world.? Because there had been a blood incompatibility between the two of us during the pregnancy (antigen-c/antibody-c), we were prepared for Joshua to quickly go to NICU to be stabilized.? What we weren’t prepared for was the discovery of a birth defect.? Charley had been sitting at my head during the c-section and a friend had been taking pictures.? After Joshua was handed over to a nurse & carried to a warming bed, my friend stood on a stool taking pictures.? I was watching her & was puzzled when I saw her lower the camera & beckon Charley with hand gestures to come over.? He asked if I was okay, then walked over to where Karen was standing.? I saw her point & Charley’s gaze followed her finger to where our son was laying in the warmer, surrounded by 4 gowned professionals.? I watched Charley’s eyebrows go up in surprise, then down as he frowned, but I could not read more of his expression since he was wearing a mask.? He turned to speak to my friend for a moment, then walked slowly back over to where I was.? I asked, somewhat alarmed by what I couldn’t decipher in my husband’s eyes, “What’s wrong?”? He stroked my arm as he calmly answered, “Oh, the baby was pretty purple at first, but he’s pinking up now and doing better.”? I knew he was lying to me, holding something back, so I again demanded, “Charley, WHAT’S WRONG?!?”? He leaned close to my face & said in measured tones, “Kate, he has spina bifida.”? “WHAT!?!?”? I think I yelled that question fairly loudly.? I asked how that was possible; after all, I’d had ultrasounds every single month of my pregnancy ~ sometimes two scans in a month ~ and they’d missed a neural tube defect?? I was shocked & scared & a whole mishmash of other emotions all rolled into one.? Mostly, though, I felt helpless.? I was 10 feet away from my baby and could not get to him because I was still being sewn closed.?? I don’t remember if I was crying at that point or not.? Probably so.? I just don’t remember.? Charley went back to where Joshua was being taken care of.? Karen was so shocked, she forgot to take any more pictures.? It was okay; I wouldn’t have remembered to, either.I was transferred to a bed to be taken to recovery right when Joshua was ready to be transported to NICU.? I still hadn’t seen him & I asked the nurse adjusting my IV at the head of the bed, “What does he look like?”? She shouted out, “Wait!” as she rushed over to Joshua’s isolette, picked him up & brought him to me.? She laid my baby in the crook of my right arm& I was able to kiss his head once, stroke his cheek? momentarily & touch his tiny hand as I quietly told him I loved him before he was being lifted out of my grasp & hustled off to NICU.?? I remember crying then.Recovery was somewhat of a blur.? I remember being there for longer than anticipated due to some hemorrhaging.? I remember shaking uncontrollably & itching terribly from the morphine I’d been given.? Charley was alternating with Karen so that one of them was always with Joshua & one of them was always with me.? At some point soon after Joshua’s birth, our pediatrician’s nurse, K, showed up to see the new baby& was told about the spina bifida.? I found out later that she immediately went to NICU and stayed there the remainder of the day so that Joshua would not be alone if Charley or Karen needed to eat something or use the bathroom or go for a short walk to get a break.? She kept vigil by my son’s bed, loving him, praying over him & quietly talking & singing to him because I couldn’t.? There really aren’t words to say how much that meant to me, especially since the ped’s nurse & I weren’t yet friends… our relationship up to that point had been limited to the usual “nurse-parent acquaintance”.? We’d only lived in the town we were in for 1.5 years, so it’s not like nurse K had years of experience taking care of my other kids, either.? She’s just one of those people who are truly an angel on earth, and I learned that the day Joshua was born.I don’t think I talked much while I was in recovery, at least not coherently, as I was pretty loopy from the meds I’d been given.? I don’t remember being moved to a regular room, but at some point, I “woke up” enough to realize that had happened.? When I was no longer in a drugged stupor, Charley was gone, but Karen was there.? She informed me that Charley had left to go attend to our other children at home & explain to them that the plan had changed.? Originally, I was going to have the baby & then, after a few hours for me to recover, Charley was going to drive home, pick up the kids & bring them to the hospital for a short visit with their new baby brother (it had been anticipated that Joshua would be in NICU only briefly).? With the discovery of the bulge on his lower spine & the “V” shaped flap of skin that could be lifted like a soda can tab, revealing a tiny hole that was leaking clear fluid (turned out to be cerebrospinal fluid coming from a dermal sinus tract ~ a tube running between his skin & spinal canal), every plan we’d had had utterly changed.? Charley had to explain to the kids (Megan was 14, Adam 13, Emily 6, David 4, Sarah 4, Isaac 2) that their new baby brother had something wrong with his back & would not be able to have visitors that day.? I felt so sorry for him having to disappoint the kids & try to explain something that he didn’t really understand yet, himself.? Neither of us knew much about spina bifida, especially lipomyelomeningocele, which is what was diagnosed after an ultrasound was done & a tumor (benign) was seen embedded in Joshua’s back & wrapped around & inside his spinal cord.?? Karen & I ordered lunch and then, while waiting for our food to arrive, I called a friend who has a child with spina bifida & asked her for information.? She quickly pulled out one of her books & gave me the basic rundown on lipomyelo.? It didn’t sound too bad, actually, and I calmed down significantly after our conversation.? The rest of the day was a blur of tears, pain medication, and a very short visit to NICU, where I was not allowed to hold or feed Joshua because he was having breathing problems.? The next morning, I was waiting for Charley to get to the hospital when the a pediatrician walked into my room. He sat at the foot of the bed, rested his hand on my ankle& said, “Kate, I am so sorry about your baby.? As you know, he has a form of spina bifida.? He also has what is called a ‘dermal sinus tract’, which is allowing spinal fluid to leak out through his skin.? This is a huge infection risk, so he will need to have surgery very soon.? He is going to be flown to Portland to OHSU in just a little while, where he will be seen by a neurosurgeon.”? I began crying as soon as the doctor started talking (gotta love postpartum hormones!) and when he mentioned Joshua being flown to OHSU, I immediately disagreed, saying, “No, no!”? Dr. C, not understanding my distress, cooed reassuringly, “I know, I know, but he’s going to be okay.? They are going to take really good care of him.”?? I again insisted, “No!” then went on to explain, saying, “No, I don’t want him flown to OHSU.? I want him taken to Legacy Emanuel.”? Dr. C asked, “Why?” and I answered, “Because that is where our neurosurgeon is at.”? His jaw literally fell open & he said nothing.? Seeing his expression, I sniffled, then asked, “What?? Doesn’t EVERYONE have a neurosurgeon?”? That made both of us smile & I told Dr. C how 3 of my kids had chiari malformation& 2 had had brain surgeries & tethered cord releases done by Dr. W at Emanuel, so I would feel a lot better about her taking care of Joshua than anyone else.? He agreed & said he’d go change the orders immediately.? He gave me a hug before leaving, then told me that if I wanted Charley to go with Joshua to Portland, he needed to get to the hospital within the hour because that’s how soon Joshua would be flown up.I picked up the phone to call Charley & I tried to tell him what was going on, but I was crying so hard that I was not even remotely understandable.? Karen took the phone from me & spoke to my husband, explaining the situation & that he needed to pack a bag quickly, then drive to the hospital.? After hanging up, she & I walked very slowly to NICU (I didn’t want to wait around for someone to find me a wheelchair) so that I could spend every minute with my baby until the transport team came for him.The NICU nurses got a wheelchair for me & then allowed me to hold Joshie for the first time.? I was still not allowed to nurse him, which was agonizingly difficult, but I let him suck on my finger & he looked at me momentarily before falling asleep.? The minutes passed by too quickly & it seemed Charley was there in an instant, followed closely by the transport team.? I reluctantly handed Joshua over to Charley with a last kiss, tears continuing to stream down my face as they had for the entire 40 minutes I’d been in the NICU.? I briefly wondered if the nurses thought I was being hysterical or overly dramatic with my tears, but it didn’t stop me from crying.? It was just so incredibly SAD & not at all what I wanted to be happening.? Charley & I talked quickly while the team was loading Joshua into the isolette & preparing him for travel.? I don’t remember what, exactly, we spoke of.? Probably how he would call & how I was going to get discharged & go home to be with the other kids.? It was only about 10 minutes and then they were leaving for the ambulance that would take them to the airport to fly north.? I hugged & kissed Charley, begged him to take care of Joshua, then sobbed as I watched him walk away, trailing behind the paramedics pushing our baby on the stretcher.Karen pushed me back to my room & I immediately began bugging the nurses to get discharged.? I ran into problem after problem, as they did not want to let me go so soon after a c-section.? I explained that I had 6 children at home, the oldest was only 14 & 3 had autism, so I HAD to go home TODAY.? Megan was taking care of everyone, but I knew she couldn’t do it overnight & there was no way I could ask her to.? Isaac was still nursing & would want only me.? My friend, who had stayed with me thus far, had to fly home the next morning.? So nope, staying another night at the hospital was out of the question.? We hashed out a plan for her to go to my house & help the kids with lunch& naps, then she would come back to pick me up & bring me home.? We figured that would give me enough time to convince my doctor to let me go.Karen left, then returned about 10 minutes later when she realized that Charley had taken the keys to the house & the van with him.? He’d driven to the hospital, then left to fly to Portland without giving Karen the keys.? OOPS!? With Karen stuck at the hospital with me &? me waiting to have my doctor come around so I could ask her to write discharge orders, we had time to think about how we were going to get home.? No one I called was home (isn’t that how it always works), so I called Nurse K at the ped’s office and asked if there was any way she could help me.? She immediately offered to drive to my house after she got off work & get the spare set of keys from Megan, then she’d bring them to Karen at the hospital.? I thanked her, then called Megan to let her know to expect Nurse K & to have the keys ready for her. The next problem was getting me discharged.? When an obstetrician came to see me, I asked where my doctor was & was surprised to hear she’d left a couple hours after completing my c-section & making sure I was out of recovery to go to Disneyland with her kids.? I didn’t have a problem with her going on vacation, but I was shocked that she hadn’t said anything to me about leaving so that I would know there’d be someone else overseeing things with me after Joshua was born.? Anyway, the fill-in doctor adamantly refused to write discharge orders for me, saying he did not care that I had 6 unattended children at home because my husband had to fly unexpectedly to Portland with our newborn son.? Nope, he wasn’t letting me go.?? He would not listen to anything I said & abruptly left the room.When a nurse came in with my pain medication a short time later, I was furious.? Not at her, but at the entire situation, and I was determined that I was leaving.? Period.? I told her that I would remove my own IV & leave AMA (against medical advice), but I was GOING HOME to my children!? I think she realized I wasn’t kidding, because within an hour, she was back to take out my IV & she had paperwork for me to sign.? I did leave AMA, but it was with full knowledge of the staff and not with me sneaking out, as I had been prepared to do.? I did receive prescriptions for pain medication, though, which was a godsend.? I know some women think c-sections aren’t very painful & they get by with just Tylenol, but I’m not one of them, so I was thankful to have stronger meds to take.Right about the time I was signing the paperwork, Nurse K arrived with the car keys for Karen.? She organized my things, helped me to the van after Karen pulled it around to the front of the building, then took my scripts & said she’d get them filled for me at the pharmacy so I didn’t have to try to do it.? Karen drove me home, helped me inside & got me situated on the couch, where I hugged & loved on my kids.? Nurse K showed up with not only my prescriptions, but some groceries & pizza for the kids!? She refused to accept any money & told me that she would be in touch the next day to see how everything was going.? Soon after settling in, the phone rang & it was Charley, telling me they’d arrived safely & Joshua had been very busy having MRIs of his head & back, ultrasounds of his bladder & other tests.? Charley assured me that our boy was resting comfortably & was sleeping peacefully at that moment.? He’d been allowed to feed Joshua ~ FINALLY! ~ and our sweet baby had drank 4 ounces of formula without problem.? Charley told me that he would be coming home via Greyhound in a few days & then driving the van back up to Portland.? That way, he’d have Joshua’s things (clothes & carseat for when he got discharged) & a way to get to the store for supplies for himself.? I told him I would be pumping as much milk as I could (thanking God that Isaac was still nursing, so I had a great supply already) so that he could feed Joshua my milk instead of formula.? We said good night & hung up.? Joshua had his first surgery on March 9th, when he was 7 days old. Nurse K came over & spent the entire day with me, saying that she did not want me to have to wait alone to hear news of how the surgery went.? Yes, she’s just that wonderful.? Charley called in the afternoon to let us know surgery had gone well, and our neurosurgeon called me, herself, later that evening to tell me the details of surgery, what she had done, and what she felt Joshua’s prognosis was.? Since no one knew about the chromosome abnormality or the chiari (he didn’t have one show up on the MRI at birth, which is very common with chiari malformation, type 1) or the connective tissue disorder, Dr. W’s prediction that Joshua would have no bowel or bladder damage & no nerve damage to his legs & would need to be detethered again when was 5 or 6, but would otherwise be totally fine sounded perfectly legitimate.? Lipomyelo isn’t supposed to be a “big deal” in the world of spina bifida.? I remember perfectly the huge sigh of relief that I let out & the feeling that we had totally dodged a bullet.? I remember thanking Dr. W & telling her we’d see her in 2012. I had no idea what the next 6 years would hold & how often Joshua & I would be in Dr. W’s office. ?For a brief period of time, though, we didn’t have anything to worry about; just a sweet baby boy to love& enjoy.? Joshua ?came home on March 14th to signs & balloons welcoming his arrival.? Each of the children had a turn holding him (using a pillow to protect his back) and then he was finally in my arms again.? As Charley & I sat together on the couch admiring our youngest of 7, we both were absolutely convinced there was something really special about Joshua.? We were right.? Now, 6 years later, here we are, singing “Happy Birthday” to a little boy who is so greatly loved & cherished by so many.? Six months ago, no one involved with Joshua’s care thought he’d live to celebrate this birthday.? Yes, we know full well that if we hadn’t spent November inpatient in Portland, the predictions made 6 months ago would have come true.? But we DID go to Portland, so praise God, here we are, being blessed to celebrate one more birthday with our amazing, strong, determined, lovable, funny Joshie.? As I think about this very special day, it occurs to me that it may be his birthday & he may be the one opening presents at his much-anticipated “Under the Sea” party tomorrow afternoon, but I know without a doubt that it is those of us who love Joshua who are receiving the greatest gift ~ more time with him.Happy 6th birthday, my sweetiepie Joshiebear.? I love you forever & a day.Sign My Guestbook | Read Tributes Written February 29, 2012 10:51pm by Kate Parker Our pediatrician & her nurse are two of THE most-amazing and wonderful people on the planet!? I took Joshua & Bethany in for appointments today & was met with a huge surprise ~~? Dr. S & nurse K had decorated one of the rooms, transforming it into what they coined, "The Party Pod", complete with streamers, balloons, bubbles & yummy treats.? I wheeled Joshie in & he was all smiles.? He quickly asked for a cupcake & devoured it while nurses sang, "Happy Birthday" to him (his actual birthday is Friday).? His doctor blew bubbles for him to pop & we all reminisced about the day he was born.? It was just incredibly sweet & fun & it meant so, so much to me that they organized an office party to celebrate Joshua's birthday.? It's heartwarming to know just how loved Joshua is by everyone there.Dr. S understands the difficulty inherent in trying to celebrate a milestone while grieving that it will be the last time we do this.? She & I talked privately, well out of Joshua's earshot, about how he's doing, & she offered words of comfort & encouragement along with her hugs. Joshua's oral-motor coordination is not very good anymore ~ Dr. S commented on that after watching Joshua unsuccessfully try to lick a bit of frosting from the corner of his mouth.? We talked about the new fractures in his feet.? We touched on his poor coloring & increasing apnea.? And she confirmed with me that Joshua was done having surgeries.? When I told her he did not want his port accessed anymore, Dr. S got a slightly horrified expression as she asked, "We're not at that point, are we?? If he gets dehydrated & is vomiting & just needs fluids and IV meds to be stabilized, we can still do that, right?" I answered that I hadn't actually thought about that situation yet, but yes, if he just needed some IV fluids to be okay, we'd do that. None of us wants Joshua to die from dehydration, so Dr. S & I agreed that we would tell Joshie that we would do our best to not have to access his port again, but there might be a time when we need to; however, we would never access him to do surgery again.? Before leaving the pediatrician's office, I got one more picture of Dr. S, nurse K & Joshua together.? Joshua had *just* fallen asleep, utterly worn out from his hour of "partying".? :)?? As Dr. S hugged me goodbye & I thanked her for everything, she very quietly told me, "He's had a good life, Kate.? Your family has given him a *very* good life."? They're words I will cherish forever. Sign My Guestbook | Read Tributes Written February 22, 2012 9:51pm by Kate Parker Things with Joshua remain status quo.? If I don't say anything, you can pretty much assume everything is okay.? If it isn't, Megan, Adam or I will update right away.? Tonight, I am posting from a hotel room across the street from the University of Oregon (go Ducks!).? I'm here with Megan, Bethany & Hannah.? The two little girls each have 5 hour evaluations tomorrow with the neurodevelopmental team from the Child Development & Rehabilitation Center that is part of Oregon Health & Sciences University.? Both girls have the professionals who work with them (& everyone in our family) convinced they are autistic & Hannah also strongly displays symptoms of Reactive Attachment Disorder.? Tomorrow's evaluations will (hopefully) provide official diagnoses & some direction for how we'll manage the more-challenging aspects of the girls' conditions.? Joshua is at home being cared for by his father & Adam ~ mostly Adam since Charley is working insanely-long hours these days.? I just called to see how all the kids are doing & got to hear Joshua laughing as he was walking on the sheet of bubble wrap that his daddy brought home from work for the kids to pop (simple pleasures ~ gotta love 'em).? Joshie knows he'll be sleeping in Adam's bed tonight & is fine with that for one night.? He wanted to verify that I will be home to cuggle with him tomorrow & I assured him I would.? After that, he was happy to go play with his siblings again.It feels really weird to not have to remember to do feeds & meds for Joshua or to remind him to drink or to make sure he eats. It's odd not hearing him in the background. I am thankful that when I go home tomorrow night, I'll still be able to do all of those things for him. I really don't want to have a break from taking care of Joshua.... I don't want to have a normal life if that means he is not in it.That said, it is really nice being here with Megan & having some time with just the 2 of us (now that the little girls are asleep). Sometimes I forget how much fun I have with her & it's lovely to get a reminder. :)Written February 16, 2012 8:37pm by Kate Parker Just a quick update here.? Joshua is holding steady while we are in Portland taking care of Bethany, who is having some challenges.? ? Last night, a friend came to the Ronald McDonald House to hang out for the evening & during the course of conversation, she asked Joshua how he was & he answered, "Good.? I'm going to heaven soon."? He said it as conversationally as another 5 year old would tell an adult they are going to McDonald's. My friend paused, looked at me, then said something along the lines of, "Oh, okay... that's good."? Adam added to the conversation, "Yeah, but you have to wait to be part of my wedding, right?"? Joshua looked thoughtful for a moment before answering, "Um... maybe."? That prompted me to say, "Hey, you're going to wait for Faith before going to heaven, aren't you?"? Again, a thoughtful pause followed by, "Well... maybe.? I'm not sure."? Later, my friend noticed how stiff Joshua was while sitting on my lap &? asked him if he was going to get his back fixed.? He smiled & cheerily replied, "No.? I'd like to be able to bend my back, but I don't need to."? He has clearly accepted how things are & where they are leading.? I'm getting there, as are the other members of my family, but it's harder for those of us who understand what Joshua going to heaven will actually look like for us.? David, my 10 year old son who has moderate autism, is very concrete about things & has told me several times that yes, it will be sad when Joshua dies, but there will be "upsides," too, and it will be okay because we know where Joshua is going.? He didn't understand why I would miss his brother when he's in heaven when being with Jesus is going to be so amazing & Joshua would not hurt anymore & we will know where he is.? I told him he was absolutely right... heaven will be a much better place for Joshua than here on earth where his body is failing him, but then I asked him if he missed Adam while his brother was in the Philippines.? David nodded very seriously because yes, he had missed Adam a great deal.? I asked him, "Why did you miss Adam?? You knew where he was.? You knew when he was coming home & when you would see him again."? David thought about it for a minute before answering, "Because he wasn't HERE." I made the parallel for David, saying, "Yes, and when Joshua dies, we will know where he is at & we will know he is happy & having fun, but we won't know when we are going to see him again & he won't be HERE.? THAT is why I will miss him."? David got it.Sarah, my 10 year old daughter (David's twin), asked out of the blue one afternoon if she could talk at Joshua's funeral.? I told her she could, but asked what she wanted to say.? She answered quite earnestly, "I want to tell people that Joshua was the happiest, funniest little brother anyone could have.? I want to make sure that people KNOW what he was like, Mom.? I want people to know how awesome he is."? I choked up, but swallowed hard & told Sarah that I thought that would be a beautiful thing to tell people.? I want people to know how awesome Joshua is, too.His coloring is now greyish all the time.? He occasionally chokes on his own saliva.? I'm actually used to his new way of breathing (shallow, shallow, shallow, DEEP).? Basically, things are progressing, but slowly, and he's mostly stable, so he's as good as Joshua gets.? Since I'm in Portland with a sick Bethany, I'm grateful that God is keeping Joshie "okay" so I don't have to boomerang between the two of them.Sign My Guestbook | Read Tributes Written February 12, 2012 6:25pm by Kate Parker It's the little things that devastate my heart the most. It's waking up to Joshua suddenly being unable to do something or say something & realizing that yesterday was the last time I was going to experience *that* thing with him. And of course I never know when the last time is going to be, so I try to enjoy everything he can do, but it's just not realistic to be able to capture every single moment every single day, which means that when the day dawns & I realize he has lost something else, a shaft of pain slices through my heart.? Joshua can't curl up in my lap anymore.? His spinal cord has so much scar tissue stuck to it & the surrounding structures that he can't bend his lower back.? He can lay across my lap or sit upright, but I can't curl him into a little ball and snuggle him like I used to.? To be fair, this didn't happen overnight.? He's been getting progressively stiffer over the past few months, but today was the day where he couldn't curl his lower back at all anymore, which I realized when I tried to cuddle Joshie after he woke up this afternoon.Another "thing" lost.? And while I realize I can still cuddle with my boy in other ways, it doesn't mitigate the sadness that comes from knowing that the days of pulling him onto my lap in the recliner & feeling him melt against me as we rock are over.I told him I know he doesn't want Dr. W to do more surgery on his head, but does he want her to fix his back for him, & he answered, "I don't remember how she fixes my back.? How does she do that?"? I told him that she makes a cut on his back & takes out the scar tissue and other gunk so that he can move his back & have it not hurt & so that he doesn't have to walk on his toes (he doesn't toe-walk 100% of the time, but is doing it more & more to compensate for his spinal cord being stretched).? He was thoughtful for a moment before telling all of us in the room very firmly, "No, I don't need to bend my back."? Despite his wishes being the opposite of what I want to do, Joshua's will be honored.? This isn't my fight & whether or not we do surgery is no longer my choice to make.? I wish it were, because that would mean Joshua didn't have an incurable genetic condition & I could tell him, "Sorry, kiddo, but we're doing what I think is best for you."? I think at this point, my almost-6 year old son is wiser than his almost-42 year old mother.? He seems to somehow understand that doing surgery probably wouldn't make much difference to the big picture ~ it wouldn't bring oodles of improvement in his overall functioning.? My emotions & desire to keep Joshua alive sometimes makes it very easy to rationalize trying something that I logically know has very little chance of making a significant difference.? It then takes conscious effort on my part to focus on that logic & not give in to what my emotions want. Sigh.Not doing another tethered cord surgery will inevitably put more downward pressure on his brain stem as Joshua's spinal cord gets stretched.? It could lead to more nerve damage to his legs, feet, bowel & bladder as those nerves gets pulled on (and subsequently more messed-up than they already are), which will negatively affect the functioning of those body parts.? Writing all of this out, knowing all we have watched Joshua lose already with regards to sensation & function in his legs, feet, bowel & bladder over the past almost-6 years and knowing that it will get worse if we don't do something about it, makes me feel nauseous.? The only consolation I have is knowing we have adequate medication to mask the pain that he would otherwise feel in both his back & his head.Actually, that's not entirely accurate.? The only physical consolation I have is the medication in my possession that I can give Joshie.? The spiritual consolation I have is immense.? God promises to be near to the brokenhearted (Psalm 34:18) and I experience that promise every day.? Today, I am reading & holding on to scripture verses that bring comfort, such as Joshua 1:9, which says, "Have I not commanded you?? Be strong & courageous.? Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go."Another verse that has encouraged me is Romans 15:13, which says "May the God of hope fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the Holy Spirit."Tonight I am holding on to hope & trying to be as strong & courageous as my little boy is despite my sadness over his latest loss.? He's so much better at this courage thing than I am, but I'm glad he's still here for me to learn from.? Sign My Guestbook | Read Tributes Written February 9, 2012 9:45pm by Kate Parker Joshua's birthday is in 22 days.? He'll be 6.? Six months ago, we held a 5.5 birthday party for him because no one thought he would make it to his 6th.? If he hadn't had 3 brain surgeries in November, he wouldn't have made it to Christmas, much less to March, 2012.? But he did have surgery and now, thankfully, we will get to celebrate another birthday with him.? It's a joyful occasion, so why am I fighting against waves of sadness that threaten to drown me?? As I plan for this milestone & peruse party supply websites, tears fill my eyes & burn as I refuse to let them fall.? Instead, I close my laptop & give myself a stern talking-to:? "Be happy, dang it!? He's still here!? Yeah, I know, he probably isn't going to make it to 7 without more surgery & he doesn't want more surgery, so you'd best make this birthday one you will always remember!"? Then I let the tears fall.? They're going to, anyway, so I might as well not fight the flood.Planning for Joshua's party has me feeling like Dr. Jekyll & Mr. Hyde.? I'm so, so, so happy that he is still alive & that he's relatively stable. I'm thanking God that I get to plan a party for my little boy and that I get to hear him giggle as he claps his hands when I share some of my party ideas with him.? I'm so incredibly grateful that he is here for me to hug & hold, to ruffle his hair & kiss his soft little cheeks. We are having an "Under the Sea" themed party & I think it is going to be a lot of fun for everyone.? Yet even while I smile as I order the items necessary to turn our living room into an underwater paradise, I am so, so, so sad that the end is coming & that as the days go by, we see signs that Joshua is struggling more. I hurt inside when I think about this being Joshua's last birthday celebration with our family.? I don't want him to turn 6 because it proves time is passing & that means less time for us to spend with Joshua physically in our midst. Maybe that sounds crazy, but I never claimed to be sane.I want to stop time. I don't want him to be 6 because without more surgery to take pressure away from his brain stem, we don't see him making it to 7, and he's made it clear to everyone ~ his family, his pediatrician & his neurosurgeon ~ that he does not want more surgery.? How I fight to not try to change his mind!? My head understands why he is feeling done.? Logically, it doesn't make sense to push more surgery when we know he doesn't get back to baseline & all we'd really be doing is committing him to more months of pain without significantly improving his quality of life.? But my heart?? Oh, my heart is breaking & wanting to do anything to keep him here with us.? Yet as soon as I write that... as soon as I think that, actually, my logical side disagrees, saying, "You know you don't really want to do that to him."? And no, I don't.? I don't want to subject Joshie to more months of pain.? What kind of mother would want that for her child?? No, I don't want to prolong his suffering, but I don't want to give him back to God any time soon, either.? I know life will be infinitely better for my son in heaven, in the presence of Jesus, where there is no pain or suffering or tears (Revelation 21:4), and I want him to experience that.? I do!? I just don't want to be left behind when he goes because life without Joshua is not a "new normal" I want to get used to. Sigh.? It sucks when what is best for your child is what is worst for you.So... the emotional roller coaster continues. Preparing for the birthday of your child who you know is going to die feels awful. Showing him pictures on websites of things we can get for his party & hearing his little squeals of excitement is delightful. Buying birthday gifts for what may be the last time is painful. Watching him frown thoughtfully as he tries to convince me to tell him what presents he'll receive is laughter-inducing. Having to think up games that will be fun yet not exhaust him is challenging. Telling him my ideas for games & being rewarded with hand clapping & cheers makes my heart melt. Agreeing to purchase a pinata for a little boy who could barely muster the strength to hit one the last time he swung a (plastic) bat 6 months ago makes my heart ache.? It seems that for every happy moment, there is an equally sad counterpart.? Most of the time, I focus on those happy moments pretty easily & ignore the sad ones even though I am aware that they're there.? I try to take my cue from Joshua, who doesn't let the difficult times in his day get him down, but sometimes the sadness takes me in its teeth & refuses to let go.? Instead, it shakes me hard, whacks my head against the wall or the ground a few times, and waits until I am limp & not moving before dropping me in a heap.? That's where I'm at right now.? Lying in a heap, emotionally broken, trying to gather the strength to get back up & not let sadness win.? Each round that we've battled, that monster fights harder against being subdued. It whispers in my ear that no one will understand if I try to explain how I feel, so why should I even try?? Yes, I know that anyone who hasn't walked the path of slowly losing a child to a disease/syndrome/condition cannot fully understand how hard it is to not be engulfed by the pain that is lurking everywhere. I loathe having an undercurrent of grief flowing through every experience that I have with Joshua & yet I can not stop it from existing.? The best I can do is ignore it & try to focus on the happy aspects of a situation, but like I've said, I know the sadness is still there & its very presence is isolating.? I'm the only person in my circle of friends who has a child with an irreversible, progressive, neurologically-deteriorating condition that has no cure. None of my friends' 5 & 6 year olds are dying (and don't give me that, "Well, technically we are all dying... we're all terminal," crap.? While it's true, I know that none of my friends anticipate their children dying in the next calendar year or are actively preparing for it).? It's kind of a buzzkill, regardless of how well I imitate normal life when I'm with others.? It's why I write these crazy, all-over-the-place emotional vents here.? It's a tangible way to fight back against the isolation & it's a way to tell the sadness to take a hike. Others may not understand perfectly what I'm feeling, but they care, and writing here reminds me of that, which helps as I make preparations for Joshua's 6th birthday & struggle to smile rather than cry.Written February 5, 2012 3:47pm by Kate Parker Adam is home & all is right in Joshua's world again.? Emily, David, Sarah, Isaac, Joshua & I stood in the observatory at the airport so we could watch the plane land & taxi in & people walk off.? As each person emerged from the plane, Joshua would say, "Nope..... nope..... nope...." Then, when he saw his brother's head pop up above the plane, Joshua yelled, "There he is!"? Everyone standing around us busted up laughing.? It was pretty cute.The kids & I hustled downstairs to meet Adam as he came through the airport revolving doors that separate the "secure" area from people who haven't gone through security.? When Adam walked out, Joshua moved as fast as he could to hug his big brother.? Adam bent down & the two of them greeted each other with enthusiasm.? The other kids waited for Joshie to get his hugs & kiss before swarming Adam, too.? At one point, I caught Adam's eye & we exchanged a grin.? Eventually, I was able to hug my guy & welcome him home, too.? When we got to the van, the kids piled in & Adam offered to buckle Joshua into his seat.? Before he lifted Joshua into the car, though, he knelt down & hugged his baby brother tight, quietly talking about things known only to them.? I snapped a picture to capture such a sweet moment, as it epitomized (to me) the relationship between my two sons.For the rest of the day, Joshua stuck like glue to Adam's side.? He was tired from our adventure to the airport, but so so so happy to have his brother home again.? Later that night, Adam was stretched out on the floor, his head propped up against the couch, and Joshua was laying on a pillow on top of Adam as they both watched a movie.? Less than halfway through the show, I glanced over & had my heart melt as I saw both boys sleeping soundly.? It was cuteness overload!? Today, Joshie is happier than he's been in awhile.? I think we all are now that Adam is back home again!Sign My Guestbook | Read Tributes Written February 2, 2012 1:10am by Kate Parker We're home again.? Joshua managed the trip splendidly & I had a lovely time showing him off to his doctors, nurses, chaplain, child life specialist & friends since most of them rarely get to see Joshua having a good day.We walked through Unit 36 of the Children's Hospital at Legacy Emanuel for the very last time & I struggled to fight off feelings of sadness as I silently voiced my 'goodbye' to a place that has been home to a thousand or more memories of Joshua over the past almost-6 years.? The new Children's Hospital opens on February 11th & Unit 36 in the "old" hospital will be renovated to become the new adult ICU (that's what a nurse I spoke to thought it was being converted to, anyway).? I don't anticipate Joshua spending any time in the new hospital, either, which is a surprise since the running joke for the past 3 years has been how the new hospital should have a "Parker Suite" for Joshua, complete with a plaque on the door.? No one knew back then that we'd be where we're at now.? It will be weird to come to the hospital & have it be a completely-new experience where I have to re-learn everything.? No, I don't think Joshua will be a patient there, but I know Bethany will spend time in both PICU & on the cardiac floor.? For those who are interested, I've updated Bethie's CB page.? slept from 11pm last night to 4pm this afternoon, which made for easy travel since Bethany napped on & off the entire way home, too.? He has been happy since arriving home & tearing off 2 more rings from the chain we made to show how many days it would be before Adam comes home.? We get to pick him up at the airport on Saturday & Joshua is very excited to see his big(gest) brother again.? I am so looking forward to watching the reunion between Adam & all of his siblings, but especially between him & Joshua ~ my camera will be very busy, for sure!Sign My Guestbook | Read Tributes Written January 30, 2012 6:47pm by Kate Parker Thanks for the supportive comments & for continued prayers & for caring about Joshua & my family (and me).? For those who wonder,? I'm not feeling overwhelmed or numb.? Joshie is still "stable" (for him) & as long as that continues, I'm still okay, too.? The conversations that we have where he talks about dying & going to heaven are challenging, yes, but once I get over the shock of them, I remember that nothing has changed in the past 24 hours & that helps me to regain my equilibrium again.I'm currently in Portland with Joshua, Bethany & Emily for a few days.? Bethany has appointments with her cardiologist & rheumatologist and Joshua wanted to stay with me, so he came along.? I brought Emily, too, since she's a great helper & I will need her assistance while up here.? We'll have some fun, too, visiting a couple friends & stopping by the hospital to say "hi" to some of Joshua's favorite nurses & Dr. W & Dr. T.Joshua remains about the same ~ we increased one of his pain medication dosages & that has helped him to feel better during his awake hours, and he's gotten used to the change in his breathing & is maintaining his oxygen saturation levels pretty well.? When he's good, he looks really good.? When he's not good, he's really miserable.? Like I said before (I think I said it, anyway), there's no middle ground with him anymore.? It's okay.? He's still here, still smiling, still enjoying himself most of the time he's awake, sooooooo..... I'm choosing to focus on the positive (at least for today).Written January 26, 2012 1:36am by Kate Parker To continue from my last entry……..I am always surprised when Joshua & I have the kind of conversation we had last night on the heels of him having a good evening.? His afternoon was tough, yes, but once his head was “only hurting an insy, binsy bit,” Joshie was cheerful & active for the remainder of the evening.? We had friends over & they commented on how good Joshua looked… how much better than they had expected him to.? I completely agreed with their observation. ?It’s exactly what I’ve been trying to convey here ~ when things with Joshua are good, he’s happy.? He walks around, he plays games on the computer & the Wii, he laughs with his brothers & sisters, and in watching him, it is difficult to believe that his brain stem is deteriorating.? ?Conversely, when he’s hurting, crying, groaning in pain, having trouble breathing or laying on the floor or in my lap, it’s extremely easy to believe that his days on the earth are coming to an end.? There really is no middle ground anymore.? If he’s good, he’s joyful.? If he’s bad, he’s miserable. Regarding our conversation last night, my approach to talking about heaven with Joshua assures him that our entire family will be there with him simply because he is a little boy who has never been away from his family and, as such, the thought of going somewhere unknown all by himself is terrifying to him.? Last year, we had a well-meaning person say something to Joshua about how he’ll go to heaven& be able to watch over his mommy & brother.? That completely freaked out my child.? He anxiously asked if he had to go to heaven alone.? Before I could answer, Adam had already enfolded his baby brother in his arms & was assuring him that we have NEVER left him alone or sent him somewhere new by himself, and that was never going to change.? Ever since then, we have spoken of heaven as a place that the entire family is going to.? It’s not a lie.? Everyone in our family who is old enough to understand has accepted Christ as our Savior & thus has been written into God’s Book of Life that assures salvation & eternal life, so we will all go to heaven when we die.? We have been very careful to not lie to Joshua.? We have not told him we’re all going to heaven at the same time.? What we assure him is that he will not go alone, and since I believe Jesus will be here to take Joshua’s hand when it is time for him to go to heaven, that is not dishonest.? We have promised to be there with him when it’s time to go to heaven & that is also truthful.? I have heard that time in heaven is much different than it is here on earth & that the time difference between when Joshua arrives in heaven & the rest of our family members arrive will seem like the blink of an eye to those already there.? I have also read (and believe) that Joshua will have such a complete understanding of what is happening (moreso than his family still waiting to join him) & will be so full of joy at being in the presence of God, it isn't going to matter that we aren't there yet even if he IS aware that we aren't.? I know some parents talk differently about heaven & their children are comforted by the explanation they are given& I think that’s wonderful. ?Not all children are alike, however, and as such, I believe it’s up to parents to determine how they explain death & the afterlife to their offspring.? Ultimately, whatever makes the journey easier for a child is all that matters (in my opinion).I do not believe that Joshua is about to die.? I don’t want anyone to think that because of his & my conversation last night, I think he’s going to wait until Adam gets home in 10 days and then go to be with Jesus.? I just don’t think that’s going to happen. ?I believe that Joshua will have to get a lot worse before things get to the point that he dies.? It is anticipated that he will die from brain stem compression causing him to stop breathing, & historically, we see a lot of increasing apnea & pain as the scar tissue building up in his head causes his cerebellum to apply more pressure against his brain stem.? Also, historically, it takes about 4-6 months after Dr. W does brain surgery for the scar tissue to build up to a point where it begins causing Joshua problems.? Since his last surgery was in November, I kind of don’t expect things to start getting really bad until March or so.? Yes, I realize that there is no guarantee that this is what will happen… no assurances that we’ll get the 4-6 months followed by a few more months of sharp decline before the end.? I know that.? Really, I do.? It’s just the pattern we’ve seen evolve, so I am hopeful that Joshua is going to follow it again.? At this point, he’s still having enough “good times” that I just can’t imagine a scenario where he would die any time soon.? Hopefully, I’m correct. Sign My Guestbook | Read Tributes Written January 25, 2012 1:41pm by Kate Parker After an awful day yesterday (not Joshua-related), I was ready to go to sleep early, but it wasn't meant to be.? While I was wanting to close my eyes & escape reality, Joshua wanted to talk. So... we laid next to each other in the dark, the sounds of his feeding pump rhythmically whirring & oxygen concentrator puffing in the background, my arm wrapped around my little boy as he curled up next to me, and we quietly conversed.? I considered getting up to write down what we'd spoken of, but lacked the energy to do it.? I prayed, instead, that God would allow me to remember my conversation with Joshua so I could recount it here today.The subject didn't come out of the blue. The groundwork for my late-night conversation was laid earlier in the day. Joshua had spent several hours laying in my lap with his head hurting pretty badly.? I had given him a scheduled dose of oxycodone, but 10 minutes later, he was still miserable & wanted to cuddle & get more medicine.? I gave him 1/3 of a dose, thinking that might be enough to get him comfortable, but when it wasn't, I gave another 1/3 of a dose 20 minutes later, and then another 1/3 dose 20 minutes after that.? Then I just held my little guy, gently stroking his hair & talking quietly with him while we waited for the medication to give him relief.? I asked Joshua, "When your head hurts really badly like this, do you want Dr. W to help you?"? He thought for a moment, then answered, "No.? Not anymore."? I knew what he meant, but wanted confirmation.? "You don't want to have more surgery?"? He agreed, telling me, "No."? "Well, what if your head hurts really, really badly?"? He clarified, "Like if the ball is there?"? "Yes," I agreed.? Another moment's pause, then, "If it hurts a lot a lot, I want you to give me all the medicine.? All that you can."? "You don't want surgery again?"? Small shake of his head. 'No."? I leaned over, kissed Joshie's forehead & told him, "Okay," then continued stroking his hair and we drifted back into silence.Later that evening, Emily, Joshua & I were talking about how great heaven is going to be when we're all there & it evolved into a shout-out of all the things Joshua will be able to do and/or won't have to have anymore.? No owies! No port accesses! No surgery!? No shunts in head or back!? Ability to run!? Jump!? Ride a bike!? He is excited to ride a lion, though he thinks he'll tell the lion to go slowly so he doesn't fall off.? He can't wait to talk to animals & he told Emily that he's going to have a pet snake that will squeeze her until she falls over & he's going to take care of fishies in a pond.? Our conversation was light-hearted & easy.? It ended as easily as it began.When we went upstairs to go to bed, Joshua hugged me more tightly & didn't let go for a long moment.? He asked me to wrap my arm around him, and though he makes that request every night, I could sense something was troubling my little boy, so as I pulled him close, I quietly asked what was wrong.? In a halting voice, he shared his heart. "I don't want to go to heaven ever."? "Why not, Joshie?? Heaven will be perfect & beautiful & you'll never hurt again."? He agreed, telling me, "I know. No more port & no tubie!" There was a long pause, then....very quietly..."But I have to die," said as he squeezed my arm.? "Are you afraid of dying?"? Solemn nod.? "Baby, I will be with you.? I won't leave you." Pause. "I will stop breathing."? "Yes, but that will just be like going to sleep.? It will be okay." "But what if it hurts?'? Deep breath on my part before answering.? "Joshie, I'm not going to let you hurt.? I have lots of medicine to make sure you don't hurt.? Dr. S has lots & lots of medicine, too."? "Will you give me all the medicine?"? "Oh Joshie, I will give you all the medicine you need so you don't hurt.? I don't want you to hurt!"? "And you'll stay with me?"? "Oh yes.? I promise."? I could feel him relax, but then he tensed again.? "What about Adam?? Is Adam coming to heaven, too?"? "Yes. Adam is coming.? We're all going to be there, Joshie."? Big sigh, followed by, "Okay, then I have to wait for Adam to get here before we can go."? I couldn't help myself, so I asked, "What about Faith?"? Joshua quickly answered, "Oh yeah! I have to wait for Faith, too!"? Then, settling himself under the covers & pulling my arm more tightly against his tummy, Joshie said with confidence, "I wait for Adam & Faith before we can go to heaven."? He turned his head & lifted an arm to hug my neck, gave me a kiss, then rolled onto his side while telling me, "Good night, Mommy.? I love you.? Have a good sleep; I'll see you in the morning.? I love you for infinity."It took me awhile longer to fall asleep.? Sign My Guestbook | Read Tributes Written January 22, 2012 2:28am by Kate Parker A couple things have changed over the past 48 hours.? I know I should type out an actual journal entry, but it's after midnight & I really want to get some sleep tonight, so in the interest of brevity, here's four updates I posted about Joshua on Facebook in the past two days to give you the gist of what's going on:"I had to call the pediatrician to give an update on Joshua because he is consistently needing double his dose of oxycodone every 4 hours. What is happening is that he can't go 4 hours in-between doses, so he gets a rescue dose 30-45 minutes before a scheduled dose is due & then also gets the regularly-scheduled dose. So he's getting a huge amount of oxycodone within 30-45 minutes. It's enough to bring his pain under control, but just the fact that he can't go 4 hours anymore is enough of a change that I had to report it.""Joshua is having enough trouble breathing that he *asked* for oxygen. What is the significance of that? He HATES having oxygen going! Before starting it, though, he was turning grey & his eyelids were drooping & he'd look like he was going to fall asleep (from lack of oxygen), so he definitely needed it. What's going on? I have absolutely no clue. Please, please pray with me that this plus the increased pain is not leading to anything... especially not while Adam is in the Philippines. We want SO badly for Joshua to be present & able to enjoy Adam & Faith's wedding... please pray God will make that happen.""Joshie is awake and happy, but his lips keep turning purple/blue. I haven't hooked him up to the pulse ox because there is nothing I can do about it if he is dropping O2 sats (oxygen can help him feel better, but won't fix the brain stem, so low sats will continue) & I don't want to stress out the kids. I've spoken with one of Joshua's specialists & she confirmed my suspicion that this is brain stem deterioration progression. As such, we can't do anything about it except agree that it completely sucks.""Nothing new to report on Joshua. Megan & I have been liberal with pain meds today & that has helped. Even though he's had some interesting breathing episodes, he didn't request oxygen, so we didn't give it, and he recovered on his own just fine."So... there ya go.? Progression of symptoms.? Nothing we can do about it.? Not thrilled about it.? Joshua is still okay, though, so I'm taking my cue from him & not getting too worked up over this new stuff.? As long as he's smiling & still able to enjoy a good portion of each day, I'm satisfied, so I make note of the new things, report them to the ped, and go on. That doesn't mean I'm not bothered by what I'm seeing, but when there's nothing that can be done about it, what good does it do to spend the day stressing out?? Besides, I feel at peace right now, despite the "new stuff".? I'm focusing on what Joshua can still do & trying to stay in the moment as much as possible.? Some moments I succeed & some I fail, but I get back up and keep going on.? Written January 20, 2012 12:54am by Kate Parker Joshua is stable in many ways, iffy in some, & not so great in a couple areas.? The good news is that, overall, he's still mostly-happy, which is why it's been awhile since I updated specifically about him.? The bad news is that the areas where he's not-so-great are troublesome.When he talks, we watch the color of his skin go from white to grey due to his inability to breathe & speak simultaneously.? The more he tries to talk, the more he stutters & has to pause to search his mind for the words he wants to say, and an increasing percentage of his words come out sounding squeaky & high-pitched.? He seems to have lost the ability to modulate the volume of his voice, too, which is such an odd phenomenon.? He's either very loud or very quiet, and he doesn't "clue in" to which he should employ at any given time, which means he might wake up a sleeping sibling with his loud, squeaky commentary as I carry him up the stairs at night, or he might not be heard making a request & subsequently will become frustrated by our inattention.More concerning to me, though, is the re-appearance of the "ball".? Yep.? Joshua told me tonight that his head really hurt because there's a ball in there again.? I asked where the ball is at & he answered, "The same place it always is," as he touched the top of his head toward the front.? I asked if it is there all the time or only sometimes.? He told me it's there sometimes, but not always. At least the sensation is not there all the time. That's something to be thankful for. He's unhappy when the "ball" is present, though, and a couple of times today, he has required extra doses of oxycodone to bring his pain back under control. Stupid ball.? For those keeping track, it's been 2 months + 1 week since Joshua had the surgery (November 12th, placement of VP shunt) that successfully eliminated the horrible "ball" sensation from his head.? Two months.? Call me selfish, but I really wanted more than that.? I know, I should be thankful that we got 2 months at all. I am, actually, but right now, tonight, I'm sad & frustrated & angry at that dumb ball for inhabiting my son's head, even if it is only a sensation & not an actual object.I know the November 3rd surgery he had (6th chiari decompression) is still "working".? While Joshie has some signs/symptoms that indicate scar tissue is building up again & pressing against his brain stem, he's doing pretty well for the most part. The brain stem portion of his brain is technically more important than where the "ball" is at with regards to keeping him alive, so what I am hoping & praying is that A) the medications we have will be sufficient for keeping Joshua comfortable and B) the darn "ball" will not become a permanent fixture that bothers him all day long. There are times when Joshua is happy & playful & I sit watching him, and the thought pops into my mind that maybe the geneticist's prediction was wrong & we'll have Joshie around for years to come.? Then, out of the blue, he'll begin crying & hold his head, wailing that his head huuuurrrrrtttsssss, and like a splash of icy water in my face, I am jolted back to the reality that no matter how "good" he may seem, he's actually very fragile & it doesn't take much at all to upset the balance & push him from stable to struggling.? I recently had someone ask me if I had any idea how much time Joshua might have left.? I shrugged in reply, saying only, "I'm not God, so no, I don't know."? I feel certain that if he had not had surgery in November, he wouldn't be here now.? If nothing significant changes in the near future, then I am fairly confident we'll get to celebrate Joshua's 6th birthday with him on March 2nd. Other than that, I can't possibly know.? It's an emotional roller coaster that is, quite frankly, exhausting, so I don't allow myself to dwell on thoughts about the future too much.? That is what God is teaching me right now, actually ~ to live one day at a time & not try to live tomorrow or next week or next month right now.? Where Joshua is at, currently, does not really allow for me to make long-term plans, and that seems to fit into God's lesson pretty well, so I'm slowly learning to not fight against it.? There is a freedom that comes from not having a calendar filled with things to do & the simplicity of my family's lives right now can be viewed as a blessing if I keep my attitude adjusted correctly.? There will come a day when we'll have the freedom to pick up & "go", but I'm really in no rush for that day to come.? I'll gladly keep things as they are since that means Joshua is still here for me to "cuggle" & talk to & laugh with.? I know my perspective on that will change if my little boy starts suffering badly again, but thankfully (sincerely ~ thank you, God!), that isn't happening today.Sign My Guestbook | Read Tributes Written January 19, 2012 2:44am by Kate Parker This isn't about Joshua, but it's big news that I want to shout from the rooftops ~ Adam is engaged!!!? He is in the Philippines (left on Monday), meeting his future in-laws & celebrating his bride-to-be's birthday, and tonight, he asked Faith to marry him & she joyfully said, "Yes!"? They Skyped me to show me the ring on her finger & to share the details of Adam's proposal, which was very romantic & had Megan and me sighing, "Aww..."My heart is soaring with this happy news.? Faith is everything I ever asked God to provide in a wife for Adam.? She absolutely adores ALL of his siblings, too, and loves being part of our big family, which is pretty special.Anyway, I just had to share my joy tonight!? I'm bursting with happiness right now!Sign My Guestbook | Read Tributes Written January 17, 2012 10:39pm by Kate Parker To everyone who commented on my last entry, thank you for your advice. I sincerely do appreciate it & I found much of it to be helpful.? The decision that I have been thinking about involves a situation that might not happen, but the odds are very high that it will.? Historically, Joshua has always regrown scar tissue that blocks the flow of cerebrospinal fluid & leads to surgery to remove the scar tissue, re-establish CSF flow & remove the pressure against his brain stem.? He never gets back to his baseline & his pain has increased over time despite surgery ~ especially this past year ~ but he's still here, so surgery does buy us more time with him.? What it doesn't do, however, is stop the scar tissue from regrowing & re-blocking the flow of CSF & increasing the pressure against his dysfunctional brain stem, which is why I am fairly certain that this situation will present itself again.Last July, our neurosurgeon decided there was nothing more she could do for Joshua (he was subsequently placed on hospice).? At the end of October, when Joshua's pain was increasing exponentially & we were struggling to help him and he thought he had a ball in his head, our neurosurgeon changed her mind about doing more surgery, saying that while she could not stop Joshua from dying, he didn't have to die the way he was going to, in horrific pain (if nobody did anything).? She didn't know if doing surgery would help one iota, but she wanted to try to help.? Thus, we spent the month of November in Portland.? And as everyone who reads here knows, the surgery did help.? No, it didn't return Joshua to his baseline, but it alleviated the sensation of having a ball in his head & it chilled out his apnea & subsequent bradycardia because once again, his cerebellum was moved off his brain stem.? We were given more time with Joshua & we got to have him for Christmas, which was a huge gift.Before we left the hospital, Dr. W's Physician Assistant told me that if there is anything more she & Dr. W can do in the future, they would be willing to do it.? And that is what created the dilemma that I have been wrestling with. When the time comes that Joshua gets symptomatic enough to warrant surgery, do I take him back to Dr. W or do I say, "No more surgery," & keep him comfortable for the remainder of his days? When it comes time to actually make that decision, it will rest on me & I will have to live with whatever option I choose. And that realization has had me twisted up in knots because I wasn't sure how I would find peace with either decision. Doing surgery is no guarantee of more time. He may not even survive another surgery.? The risks were higher this past November & they won't improve when more time has gone by & he's even more declined. And if he does survives surgery, then what? We spend another month (or longer) in the hospital recovering him to come home.... for what? I'm not saying he doesn't have any quality of life right now. He does. It's not what you would think of as great quality of life, but he's still generally happy most of the time when he's awake & not hurting.? But since we know he doesn't get back to baseline after surgery & he's at a 4 out of 10 on a good day right now (1 being miserable & 10 being totally normal), would it be worth putting him through another brain surgery to maybe get him to a 2 or 3? On a day like today, when Joshua didn't wake up for the day until 7pm & I've been giving him dose after dose of oxycodone ever since he did wake up to get his headache under control, it's hard to believe more surgery would be a good choice for him. But if I don't put him through another surgery when he reaches the point that he would really need it, I will be knowingly deciding to let him die. Then I have to live with feeling like I didn't do everything I possibly could for Joshua, and how would I live with myself?I have been trying to figure out answers to the questions that swirl through my head:? Do I hold on until there's no possible chance to do anything else or do I let go before it gets to that point? How do I know what is the best of the two lousy choices? How do I know, really know, what is best for Joshua? And then, how do I live with whatever decision I make?I know that God numbered Joshua's days before one of them came to be, just as He did for every human being (Psalm 139:16), which means that nothing I do is going to give Joshua more days than God planned for him to have, regardless of what I decide to do or not do.? There is comfort in knowing that truth.? I think what is hardest about this decision is getting my own emotions out of the way.? Right now, thankfully, I don't have to make the decision to do surgery or to not do it, so I'm not going to try.? After wrestling with this over the past couple of weeks, what I have decided is that I am not going to deal with it until I have to.? That pretty much goes totally against my personality since I much prefer to have an idea of what I will do long before I actually have to make a big decision ~ having a plan of action is what usually gives me peace of mind ~ but with this situation, I just can't do it.? So, instead, I am going to trust that when the time comes that I have to make a choice, I will be able to ask my Father what to do & He will direct my steps. I am going to rest in my faith that God will grant me peace with the decision when I have to make it & I'm going to try to not fret about it until then.? It's a simple solution, I know, but it's the one choice I do feel peace about, so I'm going with it.Written January 13, 2012 9:17pm by Kate Parker When you are faced with making a decision & there is not a good choice either way ~ if it's a "between a rock & a hard place" type of decision ~ how do you know what the best option is?Yes, there's prayer.? But when God is silent, then what?? How do you know how to choose?? And how to you find peace with the decision you make?? I'm not sharing the specifics of my choice at this time because I want some feedback that's "in general".? As soon as I share the specifics, people will tell me what their opinions are & what they would do if it were their decision to make, which is totally fine, but what I am seeking right now is an answer to HOW someone makes difficult choices when God isn't answering any prayers or providing specific direction.Your thoughts?Sign My Guestbook | Read Tributes Written January 10, 2012 6:59pm by Kate Parker As requested, here's a picture of Joshua after losing tooth #7.? The assumption is that he's losing so many teeth due to osteoporosis of his jaw.? He has another loose tooth on top & the two permanent teeth coming in (lower central incisors) are loose, too.? We've warned Joshua that he should NOT pull those teeth out because if he does, more will not grow in.? He's very cute without teeth, but it's disconcerting to me to see so many coming out when he's not even 6 years old yet.? None of my other kids lost teeth this early or this quickly.? I was a dental assistant way back in another lifetime (feels like it, anyway) and I know this is not "normal" or "typical".? My hope & prayer is that his permanent teeth will not come out, too.? Sign My Guestbook | Read Tributes Written January 10, 2012 1:28pm by Kate Parker Joshua is having more pain, but it's still controlled by extra doses of oxycodone.? He lost another tooth (actually pulled it out by himself & handed it to me), which makes 7 that are gone, all from the front (3 maxillary, 4 mandibular).? His left eyelid is drooping, but we have no idea why.? He says his belly hurts anytime he eats or drinks anything, yet he still wants to eat & drink tiny amounts.? The things I mentioned 5 days ago continue, but nothing has "blown up", so I guess this is just new stuff happening & is going to be what's normal for Joshua now.I don't really know what to say.? We're enjoying everything we can about every single day.? There is a lot to smile about & some things that could make us cry if we let ourselves think about it, but we generally don't spend the day dwelling on the negative stuff.Right now, Joshua is awake & lying in a bed of blankets, watching SpongeBob.? I am heading out to do errands & go to a doctor appointment of my own (nothing worrisome; routine annual exam).? Joshie is "okay" enough that I feel comfortable going out, but as always, I'll have my phone with me in case I'm needed at home unexpectedly.? Basically, today is a typical day in our not-so-typical world.Written January 5, 2012 9:58pm by Kate Parker Something is up with Joshua, but I can't specify what, exactly, it is yet.? Today is day 3 of things being just enough different to catch our attention.? It's nothing earth-shattering ~ just things like being very emotionally fragile (he cries extremely easily), sleeping more, and he's more restless/less content.? He's not complaining of anything specifically, but he just seems to have trouble settling into any one thing these days.? He wants to cuddle a lot more than usual, too, which I think is a result of his emotional tenderness.? This morning, Joshie woke up, was brought downstairs like normal, and immediately began complaining that his head hurt.? A dose of oxycodone was due, so he got it.? Twenty minutes later, he was still laying on the floor in pain, so he got a rescue dose of oxy.? Five minutes later, he stood up & promptly vomited. I immediately wondered if it was caused by pain or possibly his VP shunt.? He laid down for awhile & then seemed to feel a little better, but his overall mood for the day has been subdued.? I bought the kids Burger King for dinner, which is typically something Joshua LOVES & is guaranteed to get him to eat a little bit, and he looked at it & said he'd maybe have some tomorrow.? I bagged his dinner & put it in the fridge, trying to tell myself that it's not a big deal that he didn't want to eat.I don't know... I know that this doesn't sound like much.? Written out, it doesn't seem like anything important.? And (*shrug*) maybe it's not.? Maybe in another day or two, Joshua will snap out of this "funk".? I hope he does.? It's just unnerving to see the changes, no matter how subtle.? Megan, Adam & I were talking about it tonight & we all agreed that something's changed.? We just don't know yet what that something is or if it's going to signal anything important.Sign My Guestbook | Read Tributes Written January 2, 2012 8:47pm by Kate Parker Joshua is still doing all right overall.? He's sleeping more, but when he's awake, he's almost always happy.? As long as his head doesn't get bumped, that is.? I am not talking about falling & hitting his head on something.? I'm talking about a sibling walking by & grazing his head with their hand or an elbow.? Not a big 'ol bonk, but a tiny tap, is all it takes to cause intense crying & the need for a rescue dose of oxycodone to get pain under control again.? It's a vivid reminder of just how fragile Joshua is & how delicate is the balance that we've obtained for him.? He woke up a bit after 5pm tonight, had a bath & has been playing games on the computer since then. While he was sleeping, his respiration rate was 7-8 breaths per minute.? That's become pretty normal for him.? When he's awake, on the rare times we've hooked him up to his pulse oximeter for a moment (when we've noticed something seems amiss), we've seen that his oxygen level drops significantly when he's talking.? Now that we know it happens, we'll encourage him to take a break & breathe when he's stuttering.? He requested pizza for dinner, so I need to head out to pick that up for everyone. Joshua is still very interested in food, though he often doesn't eat anything that he asks for.? Still, there are enough times when he *does* eat a few bites that we all indulge his requests for food.? It's one of the easy things we can do to make him happy & we all will do pretty much anything to put a smile on our Joshiebear's face.Sign My Guestbook | Read Tributes Written January 1, 2012 5:53pm by Kate Parker It's a new year.? I am not really feelin' the "happy" part.? It's difficult to be jazzed about welcoming in a year that will be, unless a miracle happens, the year my child dies.? I am not going to allow myself to dwell on this knowledge all the time ~ or, rather, I will attempt to not dwell on it ~ but today, for this moment, I'm not going to stop myself.? Once in awhile, I need to admit that I feel sick about what I know is coming.I am the type of person who likes to know what to expect.? For me, knowledge is reassuring.? I am logical & I like things to happen in a predictable manner.? You can stop laughing now.? Believe me, I know how ridiculous it is that I want predictability with a terminal illness. That's something that isn't gonna happen!? It doesn't stop me from wanting it, though. Actually, I think that is where my biggest struggles come from.? What my brain knows does not mesh with what my heart feels.? As a result, what I find happening is that I argue with myself.? A lot. I can KNOW something to be true, but that doesn't make me feel it. Things such as knowing that when Joshua dies, his soul will immediately be in the presence of God in heaven, where there are no tears or sadness or pain, does not stop me from worrying that he might be scared or have something happen where he needs his mama & I won't be there to take care of him. Thoughts like that scare me even though I KNOW it's not going to happen.? I've never let Joshua go anywhere by himself, yet the day is coming where I have to let him go for the rest of my life.? How am I supposed to DO that?? I know, I won't have a choice. And when it does, how do I stop myself from thinking things like, "What happens when he comes looking for me but can't find me?"? Thoughts like that make me feel so anxious & fearful, which frustrates me because A) I know God hasn't given me a spirit of fear, which means that He isn't the one behind those thoughts and B) I don't actually think there is any possibility of that happening (Joshua being scared & sad in heaven). What I believe is that the passage of time is completely different in heaven than it is here, and since there are no tears in heaven, that has to mean that kids aren't aware that their parents are not there (because what little kid wouldn't be sad to be apart from their family?), so when I see Joshua again, it will be as though I was in a different room in the house & he won't have missed me.? Maybe that sounds crazy, but it's what I think happens.? I can't reconcile things any other way. But how do I make my heart feel what my brain believes to be true?? All the logic & reason in the world isn't helping me now, and I am worried that it will be a million times worse once Joshua is actually gone.I've done everything I can think of to prepare for Joshua's death in the hopes it will somehow make things easier.. or something... when he dies.? His cremation is pre-paid.? All of the paperwork has been filled out & signed. I bought his urn & have it sitting on a shelf in my room.? I take pictures & video of the kids every day so that we can look back & remember.? I went through all of my pictures from the day Joshua was born until now, culling enough for Adam to make 3 memorial videos which will be played at Joshua's service.? The kids & I have made hand prints on pillowcases (each one has Joshua's print & a sibling's) & 3D plaster hand castings (each child holding Joshua's hand).? We've picked out songs & scripture that we want included in his memorial service.? I have a list of my friends (and their phone numbers) written out so they can be called right away.? What's the point in doing all of this?? Do I really think this is going to make one iota of difference when the time comes to let my child go?? No.? Not really.? I don't.? I do it because it's something to do when I feel like I need to be as prepared as possible for something that is completely & utterly out of my control.? There's something about knowing a situation is "when", not "what if", and knowing you can't do anything to stop it from happening, that is maddening.? The majority of the time, it's been pretty easy to just not think about it because when Joshua is stable like he currently is, I've kept my focus on how he's doing right now & not thought about what's going to happen when the scar tissue in his brain starts compressing his brain stem again.? But flipping to a new year on the calendar drove home the reminder that this will probably be a really crappy year and each day that passes brings me one day closer to the day when I won't be able to hug, kiss, tickle, cuddle & talk to my little boy anymore.? I know I shouldn't think like that (and like I said, I don't generally dwell on it), but the thought comes into my head, anyway.? And the thought makes my chest hurt.? I honestly don't know how it will be possible to go on without Joshua.? I have friends who have lost children & they continue to live, so I know I will, too, but I cannot fathom HOW.? I don't want to find out for a long time.??? Written December 31, 2011 12:44pm by Kate Parker This might offend some Christians, but I’m going to say it, anyway.? So many people are saying, “Oh, praise God that He’s enabling Joshua to do more things & is healing him!”? I understand the sentiment, but the truth is that it was spending the month of November in the hospital & enduring 3 brain surgeries & getting his pain under control that made the difference, not some miracle healing by God.? ?Yes, God gave our neurosurgeon her ability to do surgery & the wisdom to know how to help Joshua & I am thankful for that.? And yes, God gave man the ability to manufacture really strong pain medication & I am very thankful for that, too.? And yes, God allowed Joshua to live through the surgeries & I am thankful for that.? But it isn’t like God has healed ANYTHING.? He hasn’t.? I’m not angry about that.? I’m just stating a fact.If God had healed Joshua, we would not need to put fentanyl patches on his arm every 3 days.? I would not need to give him erythromycin to make his gut contract so that food & liquid would leave his stomach & move through his intestines.? He wouldn’t need gabapentin to eliminate the nerve pain that makes his feet & knees feel like they’re on fire.? Ranitidine would not be necessary to neutralize his stomach acid because vomiting wouldn’t be an issue.? Oxycodone & methadone would not be needed around the clock to prevent Joshua from screaming with head pain.? Zofran would not be needed to control nausea.? If God were healing Joshua, we would not be watching his muscles grow weaker, his balance getting worse & his speech becoming increasingly garbled.? ?He would not have difficulty breathing.? He would not need to sleep more than he’s awake.? So no, God is not healing Joshua.? What God HAS done is lead me to hook up with specialists who are very, very good at what they each do.? God has given me the wisdom to know how to advocate for my son so that he gets the care he needs.? God has blessed me with doctors who listen& care enough to want to help Joshua rather than give up on him.? He has made sure I’m surrounded by people who love me & my children, people who support & encourage & speak His words to me as a reminder that I am not going through this alone.? He has sent women into my life to become instant friends as they share their experiences of having walked this road of slowly losing a child.? He has provided financially for my family in times where I saw absolutely no way to make it happen.? He has made sure we are supported through this valley, but no, God has not lifted us out.? We are still here, still plodding along, keeping our eyes on Him & knowing that somehow, this path He has us on is for our good.? I am thankful for everything God has done and continues to do, but Joshua being “stable” right now (that’s not exactly the right word, but it fits the best) is not the result of some healing He’s working out… it’s the result of a boatload of medication & carefully-balanced fluids & an amazing team of doctors including pediatrician, palliative care, neurosurgeon& pharmacist working together with me to keep Joshua “good” for as long as possible.? Without them, Joshua would not be where he is right now & I insist on giving credit where it’s due.? God is making all of this possible ~ I absolutely believe that ~ but that doesn’t mean there’s any healing going on. All evidence points to the opposite. ?And as crazy as it may sound, I’m not angry about it. I know God will heal Joshua eventually.? Either here or when He takes my little boy to heaven.? I will continue to pray for a miraculous healing on earth that would allow Joshua to stay with us, but more & more I feel in my heart that that isn’t going to happen, that God is going to save Joshua from enduring life here on earth & instead give him bliss in heaven sooner than the rest of us.? ?A part of me is jealous that Joshua will get out of this place without ever experiencing heartache or the stresses of adult life.? Most of me, however, hurts terribly at the thought of having to live without him physically here.? I don’t know how I’m going to do it, actually.? I mean, I know I will, but I cannot fathom HOW & I am in no rush to start experiencing it.? I can’t think about it too much, actually, or I start to cry.? So….instead, I’m going to continue thanking God for fantastic doctors, good drugs & for the strength to continue taking care of my sweet boy, because THOSE are the components enabling Joshua to be doing well right now.? I think it’s proper to thank God and praise Him in all circumstances, but it’s also proper to honestly acknowledge what He is & isn’t doing in a situation.? With Joshua, currently, God is providing what he needs to be comfortable, but he isn’t making Joshua better.? I believe it is important to remember that.Sign My Guestbook | Read Tributes Written December 30, 2011 9:15pm by Kate Parker This is the medication it takes to keep Joshua "stable" for 36 hours.? I drew them up for our trip to Portland.? These will cover him for today & tomorrow until 4pm.?Adam, Joshua & I drove to Portland today for Joshie's photo shoot for the Community Hero exhibit.? It was rainy most of the way up, but traffic wasn't too bad.? Joshua slept 90% of the way. We had to wake him when we arrived at the photo studio.? Thankfully, we were 45 minutes early, because it took Adam & me a good 20 minutes to get Joshua awake & ready to go inside.? He wanted to continue his nap! The photo shoot went very well.? Michael, the photographer, was amazing with Joshie & some of the pictures he showed me were tear-inducing.? I told him, "Stop showing me these!? You're going to make me cry!"? He gave me a side-hug & said, "Good!? I want them to have that effect on everyone!"? Joshua had a lot of serious pictures & then Michael got him giggling & smiling.? Interestingly, the pictures the photographer preferred were the serious ones because he said Joshua has extremely expressive eyes & while he has a fantastic smile that lights up the room, his eyes disappear when he grins.? He wants the exhibit picture to be one that shows Joshie's contemplative side with his eyes open.? I told him I'm sure whatever picture is chosen will be beautiful.? He asked if we'd driven up from southern Oregon just to do the photo shoot & when Adam & I told him, "Yep!" he seemed shocked, then told us, "I should tap-dance for you or something to make it worth your while!"? I told him that the pictures would make it worth our while.? He ended up doing a 45 minute shoot instead of 30 minutes since we'd arrived early and he took extra pictures of Joshua with both Adam & me and some of Joshua with Adam & me separately.? I'll receive a CD of all the pictures taken except for the one that will be used in the exhibit, so I won't know what picture they chose until the exhibit is unveiled at the end of May.? I can't tell you how valuable that CD will be to me.? I am SO glad we got to do this.? It's an honor for Joshua to have been chosen as one of the 25 Heroes, and to be able to "memorialize" him in this way is so meaningful to me.The CCA representative who was at the photo shoot asked me if Joshua had been granted a wish through "Make A Wish".? I told her he had & described what they'd done for my little guy.? She said that was great? & then told me that her organization wanted to offer Joshua a wish, too.? I was speechless!? The woman asked Joshua what he wanted if he could have anything & he very enthusiastically replied, "A laptop!? I’m saving my money for one!"? She smiled & told him, "We can do that!”? Then she looked at Adam & me and asked, “Is there any specific kind you want for him?”? We gave her some preferences & she jotted down notes, then told me she’d be in touch about getting that to Joshua.? So… wow!? I was completely shocked.? The kindness of people never ceases to touch my heart, especially when it’s kindness aimed at Joshie. After the photos were taken, the boys & I headed out of town toward home.? We drove 1.5 hours (Joshua slept for an hour), then checked into a motel for the night.? And that is where we are right now.? Joshua is very, very tired.? The day’s activity has wiped him out.? He is cozy & warm under two of his fleece blankets as he finishes up a tube feed& dozes on the bed beside me.? Actually, now that I look over at him, he's sleeping again.? It's sad that a day like today, where all he did was ride in the car & attend a photo shoot, could exhaust him the way it has, but that's the reality of life.? Tonight I am choosing to be happy that he was able to enjoy himself for those 45 minutes & that we were able to make this trip at all.??? Sign My Guestbook | Read Tributes Written December 29, 2011 8:24pm by Kate Parker It's been a heck of a year.? I added up the total days I've slept in a hospital bed during the past 12 months and came up with a total just under 6 months.? Half the year spent away from my family. I guess it's no surprise that my marriage is suffering & bonding with my two adopted daughters hasn't gone smoothly.? How could it?? Six weeks after getting home from Ukraine with Bethany & Hannah, Joshua was in the hospital having yet another brain surgery.? Two weeks later, we were home, but less than two weeks after that, Joshua was life-flighted back to Portland & I didn't come home for a month.? Bethany got extremely ill while I was up north & was flown to Portland, too, where she was diagnosed with an autoimmune disease that, incidentally, has still not gone into 'remission', so she cycles between being okay & miserable.? Six days after we got home after that month-long stay in Portland, Bethany was back in the hospital for 2 more weeks with sepsis. Two weeks after that discharge, she was back in again for yet another two weeks.? Four days here, six days there, ten days, two weeks... there were so many little hospitalizations with both Joshua & Bethany ~ oh, and a 4-day stint with both Joshua & Hannah at the same time, too ~ that I got to the point I didn't unpack my hospital bag.? Good thing, too, since Joshua had two more month-long stays in Portland before the year was up. It's been crazy & I am officially burned-out.Up until March 25th of this year, I thought that Joshua would grow up, get married, maybe have some kids. That day, though, a visit with the geneticist ended those dreams.? Everything since then has been about learning to let go ~ of hopes, expectations & wishes.? It's been the most painful experience of my life.Yes, Joshua is stable right now.? He's on a boatload of opioids to make that stability possible, but they allow him to function & enjoy his life. Pain medication doesn't stop the inexorable decline, though. The chiari surgery he had in November could potentially buy us more time, but in another 4-5 months (most likely, as this is the usual time frame), Joshua's body will have produced enough scar tissue to once again significantly compress his brain stem & increase the frequency & severity of his apnea & bradycardia episodes. At that point, the question of whether or not we attempt another surgery might come up.? Would we do it?? Right now, today, I don't think so.? Historically, Joshua has never gotten better than his pre-surgery baseline after an operation.? Surgery has improved some symptoms, but he still never quite makes it back to his baseline in functioning.? So, thinking 4-5 months from now with continuing decline between then & now, I can't fathom putting Joshua through another surgery & recovery in an attempt to keep him going. This last hospitalization was brutal. Three brain surgeries in 9 days were incredibly tough on him.? It took two weeks to get his pain well-controlled after the last surgery.? I don't want to do it again.? More importantly, Joshua has said he doesn't want to do it again.? I don't think I could take him up there for another surgery unless it was something he specifically asked for, and at this point in time, I can't imagine him ever asking.I got an email telling me that the exhibit for the 2012 Community Heroes will be unveiled on May 23rd & that the 25 heroes will each release a dove at the conclusion of the ceremony.? My first thought was, "I wonder if Joshua will be alive to attend."? My second thought was, "If he's not, I'll ask if Adam can release a dove in his brother's place."? I know there's a chance Joshua could still be alive & stable five months from now, but I don't have a lot of hope that it's going to happen.? All it takes is one look at Joshua's history to know that unless God does something miraculous, things are probably going to progress just like they always have. There's absolutely zero reason for me to think any differently.? I know I shouldn't dwell on the future & actually, I try not to, but oftentimes, the thoughts come unbidden.? When I receive an email discussing a future event that Joshua is invited to, the question of whether or not he'll be alive and able to participate immediately pops into my head.? It's always lurking just under the surface for me, I guess.? It's scary ~ the knowing death is going to happen, but not knowing when.? Living with chronic, terminal illness is such a draining experience.? It sucks everything out of me as I balance taking care of Joshua with being Mom to 8 other kids & running our household & doing all the other day-in & day-out tasks associated with being a parent.? I cope all right most of the time, but sometimes the emotional aspect of this journey feels overwhelming & then I fall apart.? Lately, I've been falling apart more & more.This is so hard.? It hurts so deeply.? You get to a point where you think you're as prepared as you can possibly be & then something happens to scare you ~ like an unexpected & severe apnea episode ~ and you realize you're never gonna be ready to lose him.? You're never going to get to a place where this is okay.? I've had days where I wish this were over with... where I wish we weren't living in this limbo of not knowing, of not being able to make plans because we have no idea when "IT" is going to happen & everything involved in taking care of Joshua is exhausting... quickly followed by intense guilt for thinking such a thing.? I don't want Joshua to die, but what he's doing isn't really living & sometimes I feel like we're all just biding time as we wait for the inevitable to happen.? I don't want to feel that way.? I feel guilty for ever thinking things like that.? Still, the reality is that Joshua is incapable of participating in a "normal" life outside our home anymore & I feel very sad about that.? I want to maintain hope that something will change to enable him to live much, much longer than it seems he will, but I don't really have hope anymore.? Watching him decline & knowing that he is going to die & there's nothing any human being can do to stop it from happening has pretty effectively drained my optimism completely away.? At this point, I feel like I'm merely enduring this situation.? I can still enjoy my time with Joshua.? I can still smile & laugh & be happy when he is.? But I still find myself thinking more about losing him & that allows sadness to hover under the surface of every other emotion. Now, every night just before we go to sleep, I lean over Joshua, kiss his cheek, and tell him I love him & I will never stop loving him.? He reaches up, pulls my face closer so he can kiss me back & squeeze my neck, and tells me he will love me forever.? Then, as I lay down beside him, he asks me to wrap my arm around him, which I do, pulling him close.? Then I tell him again that I love him.? I wait to hear his reply, which varies between, "I love you, Mommy," "I love you forever ever ever ever, so I win!" and "I love you, too."? And then I think, if that's the last thing Joshua ever says, I'm glad it was that.? I don't know why I have these thoughts.? Perhaps it's a culmination of the past year's events & my fully understanding Joshua's conditions & the recognition that there's no cure all coming together to produce a big ball of sad acceptance within my heart.? I've never considered myself fatalistic, but I guess that's where I currently am residing ~ at the house of Oh-well,-what's-the-point-of-fighting-this-anymore,-it's-going-to-happen-&-there's-nothing-I-can-do-to-change-the-outcome. Tonight, I don't even care that I'm here. Written December 29, 2011 12:48am by Kate Parker What's the price for having 2 good days in a row?? Joshua slept until 8:30pm last night.? "Oh no!? Now he'll be up all night!" That is what logic would dictate, right?? You think that if a 5 year old sleeps for 20 hours, they'll be full of energy once they do wake up.? Not so much for Joshie.? By 11:15pm, he was laying in my lap, dozing.? He'd received 3 'rescue doses' of oxycodone in-between his scheduled doses.? His head was hurting & he wasn't feeling well. I was actually relieved that he went back to sleep sooner than usual.? It was a flop of a day for my little guy.? A vivid reminder of how fragile he truly is.I woke him at 2:30 this afternoon because a special friend was coming over & I knew he'd want to visit with her.? We let him get moving slowly & within an hour, he was smiling & happy.? My friend, who used to be Joshua's physical therapist, brought him animal crackers because that was a treat she routinely gave him after a PT session, and Joshua was thrilled. While my kids buzzed around us, each doing their thing, my friend and I looked at pictures & video of Joshua and laughed (& cried a little bit, too).? It was a beautiful afternoon. I am blessed to have friends who are willing to enter into whatever space I happen to be occupying & share those emotions with me.? Friends who listen & don't try to fix me or get uncomfortable with my sharing the things about Joshua's journey that hurt me the most.? Sometimes I want to write about those things here, but I get scared to do it. I'm not nearly as strong or brave as some of you seem to think I am, & opening up to people I don't know isn't always my strong suit because I fear criticism & judgment.? :)? What I can say right now is that I have come to realize I am a whole lot more emotionally fragile than I thought I was.? It's interesting how I seem to? deal better when Joshua is struggling more.? I'm pretty sure it's because when he is not doing well, I don't really have the time to focus on anything other than taking care of him, so thinking about how I'm feeling doesn't get much attention at all.? When he's "stable", though, it allows me waaaaaaay too much time to think about the future.? I think about everything I've been told by doctors & everything I've researched & everything I know about Joshua's conditions, and no matter how much I try, I can't forget what I know & I can't pretend that I don't have an idea of what is going to happen to Joshua & that scares me.? There's more I want to say, but I've run out of time tonight, so I'll have to continue this later.? I'll try to get here tomorrow.? If Joshua is having a good day, I should be able to.? And maybe I'll get brave enough to just say what's in my head & heart at this time & not care what the reactions will be and instead of deleting everything I've written, I'll actually click "post".? Sign My Guestbook | Read Tributes Written December 27, 2011 1:42am by Kate Parker The story of this picture is explained later in this journal entry.Christmas was wonderful, blissful, humorous, tender, loving, joyful, bittersweet & a lot of fun..... basically, everything I had hoped it would be, with nothing that I had hoped it wouldn't.? The perfect holiday, given our circumstances.? I could not have asked for anything better.? Joshua was happy all day.? Today, he did not need even one rescue dose of pain medication.? That's a rare event around here, but as I mixed his meds for tomorrow, I realized it had happened & I thanked God for one more gift this day.? Joshua LOVED the Air Swimmer shark we gave him, and a sweet friend gave him the Air Swimmer clownfish, so now we have two gigantic remote-controlled, helium-filled balloons floating around our house!? The giggles emanating from my 5 year old as he made the fish "swim" after his siblings was priceless to hear.? The joy he exudes when he is feeling good is unlike anything I have seen in any other child.? Perhaps it's because so much of his life has been painful that Joshua so fully embraces the good times when he isn't hurting.? Whatever the reason, I was thrilled that today was a great day for him.? My entire family made many memories the past two days (we celebrated Christmas today since Charley had to work yesterday).? If this proves to be Joshua's last Christmas, then next December when we are remembering this time, we will have a hundred things to smile about (such as children roasting mini marshmallows in the wood stove & using cinnamon graham crackers & sliced chocolate truffles with the cooked marshmallows to make s'mores).? I'm so thankful for that.At the end of our gift-opening, Megan & Adam gave me two small presents to open, along with instructions to open the one from Adam first.? I unwrapped the box & found a Willow Tree figurine ~ it's a mom sitting in a rocking chair, holding her son, who is covered by a quilt.? I'll put a picture of it in the photo section here for those who want to see it.? Anyway, along with the figurine was a 2.5 page letter telling me what it represents to him ~ the countless hours Adam has watched me hold Joshua in the hospital & how our time spent together in hospitals, taking care of his baby brother, have shaped & affected him in a positive way.? He wrote that he wants me to think of Joshua & the memories the 3 of us share every time I look at the figurine. It made me cry ~ tears just slid down my cheeks as I read Adam's emotions poured out on paper... he & I have shared so much through Joshua's hospitalizations & it has truly given us a special bond that I would not otherwise have with my oldest son.? I can sincerely say that is one blessing that has come out of Joshua's challenges. To read that Adam feels the same way touched my heart deeply.? It was such a lovely gift!? He knelt down to hug me tightly & I quietly whispered my thanks for giving me something so meaningful.No sooner had I dried my eyes than Megan was urging me to open her gift.? I did so, removing the sparkly wrapping paper to reveal a small box with a translucent lid that showed a memorial ornament called "The Broken Chain". Megs told me she did not want to make me sad by giving this gift, but she knew this would be tremendously special to me (she was right).? There was an accompanying poem that came with the ornament.? The first part is from a poem that was used on the memorial folders when my dad died, so it's special to me already.? The second part of the poem made me completely fall apart. All month long, I've been focusing on not thinking about how this will probably be Joshua's last Christmas & instead I have been trying to just be "in the moment" & enjoy every single thing as it happens, but this gift broke me to pieces because it's a reminder of what is coming. I love the ornament. I love the poem. I love that my daughter knows me so well ~ that she knew I would want/need something like this. And though I know it's not realistic, I am hoping that maybe we won't have to hang it on our tree next Christmas.? That perhaps, just maybe, we'll have some unexpected development that allows Joshua to stay with us much longer than anyone thinks is possible, and it will be years before this ornament comes out of its box to be used.? Hey, a mom can dream, right?This is the poem:We little knew that morningGod would call your name.In life we loved you dearly,In death we do the same.It broke our hearts to lose you,But you did not go alone.For part of us went with youThe day God called you home.You left us peaceful memories,Your love is still our guide.And though we cannot see you,You are always at our side.Our family chain is broken,And nothing seems the same,But as God calls us one by one,The chain will link again.The picture at the top of this entry is of the memorial ornament.? You can't see it clearly, but the bottom link of the chain is broken in half. It is a beautiful reminder of everything I have been trying to forget.? For now, it stays in its box & goes on the shelf of "All Things Joshua" in my bedroom, and I will continue to enjoy the reprieve that Joshua is currently experiencing.? On Friday, Adam & I will drive Joshua up to Portland for a photo shoot.? As a Community Hero, he'll have his picture & a short synopsis of his life put up on a traveling wall that is displayed around Oregon and SW Washington.? The event will open in May.? I hope that Joshua will still be here & able to travel to Portland for the unveiling of the wall.? It is sobering to think that he could be in heaven by then.Sigh, no matter how I try to end this on a happy note, there's some maudlin that sneaks through.? Sorry about that.? I truly am thankful and happy that Joshie is doing as well as he is, but putting aside the reality of his decline is beyond my capability to fully achieve, and it's heightened at the end of a day like today.? Yes, our Christmas was as perfect as it could be, but after a month of stuffing sad emotions because I didn't want to deal with or focus on them, they're now pushing their way to the surface & insisting on being let out.? I bawled on Megan's shoulder for about 5 minutes after opening the memorial ornament that she gave me (the other kids were busily playing & totally oblivious to my breakdown) & then I teared up each time I looked at it or the figurine Adam gave me for the remainder of the day.? I've had a huge mix of happy & sad battling inside me all evening.? I think what I need to do is have a long bath with an accompanying long cry & then I'll feel "better".? Regardless of my other crazy emotions, though, is the sense of gratitude I feel that God answered my prayers & gave Joshua this day to feel good & to enjoy Christmas with his family. 1 person this Sign My Guestbook | Read Tributes Written December 21, 2011 1:46am by Kate Parker Joshua is as stable as he can get, which means we are having a great holiday season.? All of the medical "stuff" with the other kids has been taken care of ~ Hannah had surgery to fix her g-tube, David is now on medication for OCD (& is responding beautifully to it), Bethany is almost completely off the steroids she's been taking for her s-JRA flare and she's back to being her happy little self ~ and all of my other kids are healthy. To say I am grateful for where we're at would be an understatement.? We have baked cookies & delivered them to friends & the medical personnel who take care of my kids, which is one of our annual traditions.? We are spending lazy days together at home, logging many hours playing "Just Dance 3" on the Wii & competing for the high scores for each dance (Adam & Sarah are the best), building Legos & enjoying being together.? Our wood stove burns all day long & cocoa is a staple each day ~ it's very cozy & warm & I am loving being here & having time to focus on my kids without medical interruptions.? They needed this break as much as I did & I am thankful that we're getting some "down time". I have no idea how long this reprieve will last, but I do know my children & I are going to enjoy every single moment of it before the next wave hits.MERRY CHRISTMAS!!!Written December 16, 2011 9:49pm by Kate Parker Today was a learning day.? I had to leave mid-morning to take Hannah to the hospital for surgery (she had her g-tube converted to a mickey button) & when we returned at a bit after 4pm, Joshua was still asleep.? Considering that he'd been up late last night, I wasn't really surprised, but when it got to be 5pm, I asked Adam to wake his brother & bring him downstairs because I really don't want Joshua getting to where he wants to sleep all day & party all night.? I can do late nights pretty regularly, but all nighters are out of my scope of coping ability.? Ever since he's been awake, he's been complaining of head pain & has been receiving extra doses of pain medication.? In the past 5 days, Joshua hasn't needed more than 2 rescue doses every 24 hours, so today is a complete deviation from the norm.? The logical conclusion is that waking him before he was ready to be up is something he doesn't tolerate.? At all.? So...if you ask, "What did we learn today, Kate?" the answer will be, "NEVER wake a sleeping Joshua!"We're living our life as normally as possible, which is proving to be fairly easy some days & extremely difficult on others. For a few days, I was feeling very depressed because the realization that this will (most likely) be Joshua's last Christmas was (is) pretty hard to accept, but a friend helped me to regain some perspective and now I'm back to being mostly okay.? I think that keeping things normal & refusing to get mired down in sadness is the only way I'll get through the holiday season this year, and that's very important to me because I don't want to look back on this Christmas with regret that I missed out on enjoying the happy times with Joshua because I was grieving what was coming in the future. Sign My Guestbook | Read Tributes Written December 9, 2011 11:25pm by Kate Parker This afternoon, my 4 sons & I went to my friend's house so the boys could play video games & hang out while we moms chatted & relaxed.? We had a really good time.? Joshua even got out of his wheelchair & walked around a little bit, which made Anneliese & me smile to see.? After a few hours, though, he was wiped out & ready to go home.? I tried convincing him to stay a bit longer since his brothers were having fun (Adam is buddies with Anneliese's 20 year old, and David & Isaac love to play with Raymon's game systems) & he toughed it out for another half-hour, but then he was ready to leave, so we did.? Within 15 minutes, Joshua was asleep in his car seat & he's remained sleeping since then.? It was worth taking him out, though, and it was really great being able to spend time with a friend!? When we got home, my daughter, Emily, informed me that a woman we know from Legacy Emanuel called to say that Joshua has been chosen as a Community Hero.? I will talk with her on Monday to get more information, but a Google search led me to this website & the woman who called works for CCA, so I know this has to be what she is talking about.? excerpt from the information about Community Heroes says, "An exceptional group of 25 children and teens who represent the thousands who battle life-threatening illnesses with strength and grace.? The Heroes reside in Oregon and SW Washington, and were nominated by the medical professionals who work with them one-on-one."I am so honored that Joshua was chosen as one of these Heroes!? I am humbled that someone (or several someones) who has taken care of Joshua nominated him.? To my family, Joshua definitely is a hero.? He's courageous & fights with an indomitable spirit & he never loses his smile or his joy despite everything he has gone though & continues to face.? We know God has infused Joshua with strength & an amazing resilience that inspires many.? To hear that at least one of the medical professionals who has met Joshua recognizes those qualities fills my heart to overflowing with thankfulness & appreciation.? I love that others see my little boy the way I do.? I am happy that his sweet, smiling face will be part of a traveling exhibit and I feel proud that he will be a representative for so many others who are walking similar paths, be it in a fight against cancer, mitochondrial disease, a chromosome abnormality, or some other potentially (or guaranteed) life-limiting condition.? Thank you, God, for letting Your light shine in Joshua so brightly that others see it & are touched by it.? Thank you that I get to be this amazing little boy's mother.Sign My Guestbook | Read Tributes Written December 7, 2011 9:19pm by Kate Parker "How's Joshua doing?"? That's the most difficult question for me to answer these days.? It probably should be easy ~ he's doing pretty well ~ but I can't help but think, "Compared to what?"? Compared to where he was two years ago?? One year ago?? Six months ago?? Six weeks ago?? What?? Oh, I know, I shouldn't think about it.? I should just enjoy the moment we're in right now. I try to do that.? I really do.? But how in the world am I supposed to not remember how different things were not that long ago?? It has only been 8 months since I learned that Joshua's condition was not compatible with a normal lifespan and it's been a year since he started the decline that has been slowed a few times (fortunately), but not halted.? I cannot stop myself from seeing little boys all around me who are running, jumping, climbing, speaking clearly, wearing shoes, going to school, learning to read and I remember when Joshua wore shoes, was able to run & jump & climb, and when he spoke decently, too.? I am reminded that he should be going to school & learning to read & playing with friends & being a little boy.? Instead, he is drugged to the gills just to get through each day.? Sure, he still smiles & laughs & he can sort of walk for tiny distances & he talks (though most of it is fairly unintelligible to everyone), but it's artificially induced because if he weren't on massive doses of multiple opioids, he wouldn't be doing any of those things.? Yes, I'm happy that he is still doing those things.? I'm truly thankful that he is still having a lot of good hours & that even though his world is drastically limited, he's still happy a good deal of the time.? But compared to where he used to be & where he could still be if all he had to deal with was spina bifida & chiari?? The difference is staggering.? I want to answer the question of how Joshua's doing honestly, but I don't know what to say.? I doubt people want to hear, "Well, he's pretty good considering that he's on major drugs to keep his pain controlled."? Yet when I say he's doing well, or pretty good, then the impression it seems to leaves with a lot of people (in real life, not here on caringbridge) is that he's getting better & that isn't true.? I've been told that God is doing a miracle in Joshua's life & I guess I just don't see it.? I see really good medical care & medications helping him to function better than he would without 'em, but a miracle?? Not so much.I also struggle with hearing, "He looks great!" because all I can think is, "Really? What are you seeing?"? Perhaps people who know Joshua's prognosis get a picture in their head of what he will look like, so when they see him smiling in his wheelchair, they disregard his pasty-grey complexion & tell me how fantastic he looks.? What I wonder is whether they actually believe what they're telling me.? I had one friend come over to visit for the first time in a few months on a day when Joshua was "doing really well" and after she said hello to the kids, she took me aside in the kitchen & broke down in tears as she told me, "Oh Kate, he looks awful!? I can't believe how much worse he looks than the last time I saw him!"? Know what?? I appreciated her honesty.? She validated what *I* see every single day & I told her that & thanked her for it.? I don't know if others see something different or if they are trying to be kind by telling me Joshua looks good or is doing great, but the words ring hollow in my ears because they don't mesh with what I perceive as reality.Do you know what it takes to get Joshua to where I can say he's having a good day?? It takes making sure he gets enough sleep, not being more than a few minutes late on ANY of his medication doses (beginning with the middle-of-the-night ones as they lead into the next day), not letting anything upset him, not letting him get too active, feeding him on schedule, not letting him get hurt in any way & rushing to get him a "rescue dose" of medication as quickly as possible after he moans, "Head hurts!"? He can't cry because if he does, it increases the pressure in his head & make his pain blow off the chart & then it takes hours, or sometimes the rest of the day, to get it back under control.? When I say he can't get "too active", I don't mean normal 5 year old rough-housing; I mean he can't talk too loudly or get too excited while playing a video game or stand up for too long.? When I say he can't get hurt, I'm talking about minor things like someone bumping against his chair while he's playing a video game or him falling down when he's walking.? I work to do everything I can to arrange circumstances in such a way that the odds for a "good day" are maximized. But they don't just happen.? Not anymore. Maybe he does look great for a child with an irreversible & progressive chromosomal disorder, but again, I know what he looked like 6 weeks, 6 months, 1 year, 2 years ago, so to me, he doesn't look great.? He looks ill.My guess is that people reading this will either understand because they've been where I'm at (and if that's the case, I'm truly sorry because I had no idea how badly this hurt until I got here, myself) or they will tell me that I really should try to focus on all that Joshua can still do & not dwell on all that he's lost.? That's a really good plan, but what happens when I'm focused on how wonderful it is that he is still walking & next week, he loses that ability?? Or I'm thanking God that he can still eat, but two days from now, he stops & a week later, I realize that eating is gone for good?? How is a parent supposed to not think about all that has been lost when a child is actively losing ground as the days go by? I know that focusing on the positive is better than moping about in the negative.? I don't spend all day every day being depressed about Joshua.? Anyone who knows me can attest to that!? That said, there are times when the cold, hard truth of what is happening is so THERE that I can't push it aside.? Times when the future and what it holds stares me in the face & insists, "You WILL pay attention to me!"? At those times, yes, I open my eyes & really LOOK at Joshua.? I see the beads of sweat on his forehead, upper lip & chin as he sadly tells me his head "really hurts" and I watch him pull himself to a stand using his IV pole for assistance and I place my hand on his chest & feel how infrequently he is actually inhaling & I admit that he's getting worse.? That even though he's still cute as can be & even though he had a "pretty good day," today, he's not doing well overall.? The big picture hasn't changed & sometimes I think everyone needs to be reminded of that even though it would be much more pleasant to imagine that maybe things are okay since Joshua's having "good days" right now.Believe me, it was really easy to be in the hospital and want to pretend that Joshua was there for surgeries that were going to help him improve again.? The truth, however, is that what we did very well could have exchanged quality for quantity.? There's a reason Dr. W never wanted to put a VP shunt in Joshua's head & why she stated emphatically, multiple times, that it could kill him. That hasn't changed. It's why she did a ventriculostomy first ~ placing an external catheter into a ventricle of the brain to see if a shunt would improve things enough to justify the risk.? It did, and it was the VP shunt that got rid of the "ball" that Joshua was convinced was in his head, so putting it in was the right decision, regardless of the possibility that it could actually shorten the life that is already going to be shortened by the chromosome abnormality. Quality of life over quantity.? That is what all of the decisions for Joshua are weighed against now & it's not always easy to know if I'm making the right ones, so maybe that's why I can't forget where this is all heading.? And me being me, I refuse to pretend that what's happening isn't actually happening, so I don't want to smile & agree that Joshua looks splendid & is doing great when the truth is quite opposite of that. I am happy to report when he has had a good day.? I guess I just want people to have a clear understanding of what that means.? Joshua's good day doesn't resemble your healthy child's good day.? At all.? I just want people to "get" that.? I am very thankful that we have access to medications that can keep Joshua comfortable enough that he is able to smile & laugh & enjoy some activities at home.? I'm so happy that he'll be here with my family for Christmas & into 2012, especially since there were several days in 2011 that I was not at all sure he would live this long.? I am grateful to have him laying in my lap, sleeping, as I type right now.? I pause to watch him breathe & silently thank God that He is giving me this time.? I also tell Him that I really wish it weren't like this.? I really, really wish that Joshua were tucked into a bed in his brothers' room, sleeping there with them, because that would mean he wasn't actually as sick as he is. I tell God that this really bites & while I think it's great that He is using Joshua's situation to reach other people & minister to them, why did it have to be MY son who got used for this? I realize that's not PC to admit, but it's true & I know God understands my feelings. He sent HIS only Son to suffer & die, too, so He knows how I feel. Jesus was the person who bore the weight of ALL sin ~ past, present & future ~ and died a horrible, painful death so that every human being can have a relationship with God & eternal life in Heaven if they accept Him.? He didn't deserve that, but he willingly died for the greater good of mankind.? I am in no way saying that Joshua is on par with Jesus (that would be completely ridiculous). I'm saying that despite my unhappiness at what is happening with my child, I still recognize that God can use this terrible, horrible, no-good, full-of-the-suck-and-sadness situation & bring some good things out of it. For that, I am grateful.? It would be much more heartbreaking to watch Joshua go through everything he has gone through (and continues to endure) & think there is absolutely no reason for it happening whatsoever.? Do you remember when I shared that several of Joshua's primary care nurses at the hospital had read the neurosurgeon's admitting report (the H & P) and said they could not bear to take care of Joshua anymore because it's gotten too painful for them to see what is happening to him?? I got a copy of that report for myself.? I wanted to see why it was described to me as "a hard read".? I figured it wouldn't be tough to handle since I already know everything that is going on with my son.? I was wrong.? Reading "extremely complicated 5-1/2-year-old boy with a chromosomal abnormality contributing to neurodegenerative decline that is irreversible," and "there is no cure for Joshua & his condition will continue to deteriorate," hit hard.? I guess there's something about reading the words on the report that makes everything more... real, maybe?? Or more final.? Or something.? I don't know exactly what it is.? I understand, however, why some of our very favorite nurses didn't feel they could take care of Joshie this time.? I understand, too, why some of the nurses who did take care of him sometimes had to fight back tears when they were in the room.? To all of them, I say, "Thank you for loving my son.? Thank you for caring so much.? Thank you for being sad about what is happening to him, too."? I could say the same thing to so many of you reading here, as well, so I will.? Thank you.? It's comforting to know Joshua matters to more people than just Charley, me, our kids & our close friends.? Sigh. I don't know what my point was in writing this journal entry.? I guess it's just been a "mind dump" and didn't necessarily serve any purpose other than to get excess baggage out of my head, but that is worthwhile (at least for me).? :)? But hey, since it's a post of random stuff, let me end with two things!? One:? the reason I try to avoid calling the medications Joshua is on "narcotics", calling them "opioids", instead, is that his palliative care doctor pointed out the difference between the two terms.? Do a Google Image search of the two words & see what comes up.? "Narcotics" pulls up street drugs, illegal drugs.? "Opioids" brings up legal medications.? It's just semantics, I know, but ever since Dr. T pointed out the difference to me, I try to incorporate the correct word in my vocabulary.Two:? Adam made a video, shared it with me & graciously allowed me to share it with my friends on Facebook, so I thought I'd share it with the rest of the world, too (or at least those of you who read here & want to click the link, LOL).? ? I know I'm biased, but I love it.? The music, the lyrics, the pictures, all of it.? This is a tiny sampling of Joshua's life, yet you can see that despite all of the pain he's lived with & the surgeries & procedures he's endured, God has enabled him to continue smiling.? His name means "God is my salvation & my strength."? Looking at videos like this reminds me how true that really is, not just for Joshua, but for us all ~ that God is our strength, especially when we're going through the hardest trials of our lives.Written December 6, 2011 5:56am by Kate Parker Hi All ~ I apologize for the absence in updating.? A friend of a Facebook friend told me today that she has been on pins & needles waiting to hear how Joshua is doing, which made me realize I hadn't said anything in almost a week, so I told her that I hadn't been updating anything on Facebook, either, but I would write something here today.Re-entry (what I call my return to real life after a prolonged hospital stay) has been extremely difficult this time.? Part of it is because taking care of Joshua’s needs is a labor-intensive job and after having a month off ~ where nurses did the bulk of his cares & I only did things like change his diaper & change his sheets & give sponge baths & only occasionally started/stopped a tube feed ~ I’m no longer in a routine, which has created enough stress that the time off almost wasn’t worth it.? It’s not like I could have done more, though ~ in the hospital, the nurses have to give medications, not me, and that’s actually something that takes a bunch of time out of every day.? Prior to this last hospitalization, Joshua received medication every 2 hours around the clock, had tube feeds every 4 hours during the day (9am, 1pm, 5pm & 9pm) that took 1 hour each, and received water through his g-tube the rest of the time at a much-slower rate (1/4 that of a tubefeed).?? My only complaint was that I wasn’t getting even remotely enough sleep to function well.? Now he gets scheduled medication every 4 hours (he’s on 7 meds but doesn’t get all of them every 4 hours),? plus he can get 2 “as needed” doses of pain medication separated by 2 hours in-between the scheduled doses.? So, to illustrate, his scheduled doses are at 4am, 8am, noon, 4pm, 8pm & midnight.? He could get a PRN (as needed) dose at 4:30pm & then again at 6:30pm in-between his scheduled 4pm & 8pm doses, or he might need something at 1:15pm, which would mean I would wait until 3:15pm before giving him another dose if he asked for it.? The scheduled doses never change, but the PRN doses can & do.? Since coming home, he has averaged 6 PRN doses given during his awake hours each day (<12 hours).? That probably doesn’t sound like much (and I guess it’s not), but having to remember what time I last gave a PRN dose of oxycodone & ensuring it’s been at least 2 hours? before I give the next one is something that takes more effort than you might think would be needed, especially when there’s the added step that I can choose to give Joshua 1 PRN dose in 2 half-doses& sometimes that is definitely needed (when he is having a lot of pain and can’t go 2 hours between his PRN doses, I can give half of a PRN dose at, say, 1pm, the other half at 2pm, and then another PRN dose at 3pm before the next scheduled dose at 4pm)... so at some points during the day, I’m drawing up pain meds every hour to get Joshie comfortable.? Yes, I can write down times on my dry erase board so I don’t have to actively remember when it’s safe to give another dose, but that, too, involves one more step.? Again, maybe it doesn’t sound like much, and if I had just one or two other kids besides Joshua, maybe it wouldn’t be a big deal, but sometimes the smallest things have the biggest impact.? For me, managing Joshua’s medication schedule is one of those things.? It’s very time-consuming.? I won’t complain too loudly, however, simply because this schedule allows me 4 hours in-between medication doses at night, which allows me to get some needed sleep.? Also, it’s my understanding that the palliative care doctor & our pediatrician will be conferring regarding Joshua’s PRN dose requirements (I’ve been keeping a daily log) & making adjustments as needed.? I believe the goal is to get Joshua to where he isn’t needing more than a couple PRN doses each day.Joshua wants me available to him at all times.? He wants me nearby, even if he’s busy doing something that doesn’t involve me.? Multiple times during the day & evening, he will ask to “cuggle,” which means he wants to be held on my lap, typically on the floor so he can be comfortable.? I am happy to cuggle with my little boy, but it definitely makes parenting my other 8 kids a challenge!? I am trying to get as much accomplished as possible while Joshua is sleeping because when he’s awake, he will need my attention to a large degree & I want to be able to give him that attention since I don’t ever want to look back & regret that I didn’t make time to hold him when he asked to “cuggle wis you, Mama.”? The thing I have learned, however, is that I cannot do everything that I used to do.? Joshua’s needs have increased & my ability to manage everything has apparently decreased, which is something I’m struggling with since there isn’t a lot I can “let go” of.? Seriously.I came home to 3 other children having health issues.? I’m not talking about a cold virus or anything that piddly.? My other medically-fragile child, Bethany, & my youngest daughter, Hannah, are both extremely impaired, neurologically.? They have Down syndrome, but also other conditions that impact their ability to learn & develop.? At 4 years old, Bethany is the size of her 2 year old sister (they’re both about 24.5 pounds& 35 inches tall).? Neither girl eats ~ they’re both fed via g-tube.? Neither babbles or has any speech.? Neither walks.? Neither plays with toys.? Bethany needs open heart surgery, but we can’t schedule it until she has been off steroids for at least 2 months & is not showing any signs of having a flare of her systemic Juvenile Rheumatoid Arthritis (the reason she’s on steroids & weekly chemo).? She had a huge flare-up just before Joshua went to the hospital at the beginning of November, so she was put back on higher-dose steroids, which set back the clock for her surgery by at least 4 months (it takes 2+ months to wean her off the steroids).? Meanwhile, she gets more lethargic & less interactive with the world around her, which was already a problem due to her severe autism.? Hannah got her g-tube on November 2nd, the day I went to Portland with Joshua.? A local surgeon did the operation because our pediatrician was trying to make things easier for me by not having to deal with taking Hannah to Portland since Joshua was going to be having another risky brain surgery & she knew I really was not mentally or emotionally capable of dealing with both kids in the hospital at the same time again (I’ve already done it twice this year).? Also, we knew Hannah would only be in the hospital overnight & Joshua would be there for awhile, so it would have been difficult to have Hannah there.? SO!? She had the g-tube surgery but instead of doing an endoscopic procedure to place a PEG tube or an open procedure to place a mic-key button, the surgeon did an open abdominal surgery & put in a latex foley catheter, size 8 french.? Ignoring the fact that Joshua has a latex allergy, so having a latex tube in our house wasn’t going to be good, the fact that the doctor placed such a tiny tube meant that Hannah could not be fed any other way except continuously, via pump.? So now we have a 2 year old who can’t crawl anywhere because she’s attached to a pump on an IV pole so she can be fed all day.? Oh, and the tube hanging out is dropping latex proteins on every surface it touches as she tries to move around.? Obviously not a good scenario, so Hannah has had to spend a huge amount of time in her high chair, which is not helping her already-profoundly-delayed development at all.? When I came home, I had to immediately take her back to the surgeon to ask him how he planned to fix this problem ~ I mean, how do you get a 14-french mic-key button through a tract that is the size of an 8-french tube (or, for those who have no idea what I’m talking about, picture trying to push your index finger into a hole the diameter of a pencil)?? The other complication here is that since he used a regular foley catheter instead of a PEG tube, the tube laid on its side the entire time it has been healing, so now the tract between Hannah’s stomach& her skin is slanted, which is going to make placing a mic-key difficult (mic-key buttons are supposed to go in perpendicular to the skin, not at an angle).? The doctor told me he’d “do his best” to get a mic-key placed & that he’d take Hannah back to the operating room to try and get it done.? If he can’t do it, I’ll have to take Hannah to Portland to have our pediatric gastroenterologist? either fix the other doctor’s work or re-do it entirely.? So this “easy” g-tube surgery has turned into a mess.? It has reminded me why I go through the effort of driving 250 miles to take my kids to pediatric specialists.? Sometimes, someone trying to make my life easier backfires spectacularly.? Unfortunately, this was one of those times.? I am so grateful to my kids’ pediatrician for trying.? It’s not her fault that things have turned out this way & I’m not upset with her.? I am, however, peeved with the surgeon who dang well should have known how to put in a flipping mic-key button & call it a day & who KNEW I had a son with a latex allergy & therefore did not want him using anything with latex on Hannah & had told me at her pre-op appointment that he would not!? Truth be told, I’m also frustrated that this piddly little procedure, which I know from experience with Joshua & Bethany SHOULD be no big deal, has not been easy for Hannah, and I feel guilty for not taking her to Portland& having it done right the first time.In addition to Bethany & Hannah’s medical situations, my son, David, who has moderate autism & severe ADHD, developed what appears to be full-blown OCD in my absence.? We (“we” being his ped & myself) have been watching his OCD-like symptoms for over a year, but since they’ve never become incapacitating, it wasn’t something we were worried about.? Now things have changed.? Drastically.? I shouldn’t be surprised; after all, David is my most-sensitive child when it comes to having routines altered & he reacts the most to stress.? Apparently, my being gone for almost a month& Joshua being as fragile as he is now have triggered the OCD.? I’ll be taking David to the doctor this week & we’ll go from there, but in the meantime, he’s extremely challenging on a moment-to-moment basis.? He wants to wash his hands for 20 minutes at a time, repeatedly throughout the day because he’s obsessed with germs & is convinced touching things will contaminate him.? He wants to brush his teeth for 20 minutes to ensure they’re clean.? If he bumps into a sibling or perceives that he’s done something wrong (real or imagined… most often imagined), he will apologize 20 times in a row.? If he is happy about something, he wants to thank me 20 times.? Twenty is his magic number.? God knows I wish it were two, instead.?? David also can’t tolerate the sound of a pencil on paper anymore, yet when he makes a mistake, he scribbles things with a pen to the point that everything near the mistake is illegible, so I can’t let him do his schoolwork in ink.? I’ve put earplugs in his ears to try and muffle the sound, but it’s not enough & he still freaks about using a pencil, either regular or mechanical.? As a result, it’s taking him almost 8 hours every day to complete his schoolwork, which is about twice as long as it normally would.? I understand completely that these behaviors are not David’s fault.? I “get” what OCD is & how it affects a person.? I’m not blaming my son for being so difficult right now.? I’m merely voicing how much of a challenge it presents, especially in light of everything else going on.My oldest son is going to ask the young woman he’s been courting to marry him.? He’s got college finals this week & also has to make up tests that he missed in his classes during the time we were in Portland.? He was fortunate to have compassionate teachers who extended understanding & grace and allowed Adam to miss a month of school without penalty.? Now, however, he has a lot of work to do in just 3 days.? He wants my help in preparing for both of the major events in his life (getting engaged is the one he’s most-excited about, of course).? My oldest daughter, the one who steps in as “Mom” when I’m in Portland with Joshua, NEEDS time away from her siblings & wants to spend time with me.? Typically, we go out to dinner & then shopping or some other fun time-waster while we talk & relax & laugh together after I get home from a hospitalization, but I haven’t been able to make that happen yet since coming home, which disappoints both her & me.? She knows it will happen & her social life has resumed since my return, but it’s still something that weighs on my heart because I know she needs my time just as much as the others.? My other daughters (ages 12 & 10) and son (age 8) just want me around.? They’re pretty flexible & adapt to the crazy changes around here fairly well (thank you, God), but still, another month-long separation leaves them needing their love tanks to be filled by Mom again, too.? I’ve spent a little over 6 months total in the hospital this year (between Joshua& Bethany) & my entire family is weary.? Top all of this off with it being the Christmas season and knowing it will most likely be Joshua’s last Christmas and… well…. I’m an emotional mess.THAT is why I haven’t updated here.? I just haven’t had time to sit and do it.? It’s after 3am right now, in fact, and I *should* be sleeping before I have to get up to medicate Joshua at 4am, but Joshua was up super-late (curled up in my lap) & I felt I needed to keep my word & update like I said I would.? I’ve received so much support through this caringbridge page & I appreciate it tremendously.? I don’t want to leave people who read regularly hanging & wondering what’s going on with Joshua.? So… that said… I guess I should fill you in on the little guy.Joshua is doing all right.? He is still able to walk a little bit, but he’s very shaky & unstable when he does & he is unable to walk for long.? He sweats all the time (side effect of the pain medication) & that gets severe when he’s hurting.? When his pain is at a manageable level, he is happy to play games on the Wii or computer with his siblings.? He laughs & smiles & teases them from the comfort of a bed of blankets on the floor or the couch.? He’s much more emotionally “needy” than he’s ever been. ?He cries much more easily than he used to.? He’s more philosophical& seems to have a greater understanding than before this last hospitalization that his body isn’t working the way it should.? He is more interested in the idea of food& having access to it than actually eating anything.? He drinks less than 2 ounces of fluid each day (which is why he gets water through his g-tube when he’s not getting formula for calories & nutrients ~ to maintain hydration).? What excites him the most & gets him clapping & cheering is when he sees me bringing him a syringe of oxycodone.? He will sing out, “Yea!!!? It’s pain medicine time! ”? I smile at Joshua as I give him his medicine rather than cry that my son is so excited to get a dose of oxycodone because he knows it’s the only thing that will give him relief from his headache, but it’s a twist of the knife in my heart if I allow myself to think about how sad it is that a 5 year old would clap & cheer because they’re getting dosed with heavy-duty pain meds.? He sleeps more than he’s awake.? He has apnea episodes, sometimes fairly significant ones (his oxygen falling to the low 70’s), & his respiration rate tends to be very slow when he’s sleeping (like 8-10 breaths per minute instead of the normal 20).? He got a haircut and looks really cute. Overall, he’s as okay as he can be & I am thankful for that.? He is excited about Christmas & asked to have an “insy binsy cwee”? for himself in addition to the big family tree.? We obliged, of course, and allowed Joshua to pick out the garland & lights he wanted for his tree.? He surprised everyone by asking if he could have a box of heart-shaped ornaments.? They’re light blue & silver, made of glass, with lots of sparkles.? I asked why he wanted those (all I envisioned was them breaking after a cat knocked ‘em off the little tree) & he took my hand, smiled & answered, “They’re for you.”? Megan quietly whispered, “They’ll always remind you of him.”? The box with those 4 matching ornaments was quickly added to the cart & I blinked hard& sniffed a few times as I continued pushing Joshie’s wheelchair down the aisle.He hasn’t asked for a lot for Christmas, which doesn’t surprise me since none of my kids ever do, but? one thing Joshua wants (and is totally getting) is an “Air Swimmer” ~ it’s a remote-controlled shark that is filled with helium and therefore “swims” through the air.? Joshua saw it on commercials while in Portland & he is filled with glee at the idea of being able to scare his sisters by having his shark “swim” into their room while they’re in bed.? I will definitely be videotaping that when it happens (and you know Emily & Sarah will play along & give really over-the-top reactions, which will thrill their baby brother).? ?We’ll be making sugar cookies & letting Joshua (and the other kids) decorate them.? We’re playing Christmas music a lot & Megan pulled out all the stops in decorating the interior of our house for Joshua’s enjoyment.? Yes, everyone in our family likes Christmas decorations, but Joshua LOVES lights & Megan spent hours one night stringing lights & garland around the perimeters of our living room, family room, kitchen & dining rooms.? Then she used a string of lights to make a “J” above Joshua’s bed.? She put up lights around his walls, too.? He LOVES it!I can’t allow myself to think about this being Joshua’s last Christmas right now.? I can’t allow myself to dwell on any emotion for too long right now, actually, good or bad, because if I do, I know I’ll have a breakdown & I don't have time for that.? There is way too much for me to do & I can’t get it all done anymore, which is something I am not accustomed to & contributes to my emotions being raw.? Between taking care of Joshua, dealing with insurance issues that have kept me on the phone for over 8 hours so far in 3 days of dealing with them, taking kids to appointments, homeschooling & everything else that’s involved in running a household with 11 members, I’m crazy busy & feeling like I fail a lot more than I succeed.? I usually find my groove, or my “new normal”, pretty quickly after a hospitalization, but this time has been very different.? I suspect that having to learn a new medical routine for an extremely-fragile child while having 3 other kids experiencing medical issues simultaneously right at the beginning of a holiday season has something to do with it.? Regardless of the cause, however, the result is the same ~ an over-stressed mother who is barely hanging on.? I know God is my strength right now, because otherwise I wouldn’t be getting out of bed every day.? That I do & that I manage to accomplish ANYTHING is a testament to His grace & influence in my life.? More than ever before, I am coming to truly understand the meaning of “When I am weak, He is strong.”? I’m grateful that He sustains me even when I’m not spending time with Him like I ought to (and need to) be doing.? I’m grateful for friends & for those who love me.? I’m especially grateful that Joshua is still here & we get to spend another Christmas with him.? My biggest hope & prayer is that he will be able to enjoy everything he loves about this time of year& that my family would be able to cement every moment of happiness during this season in our memory banks forever. I don't want to forget one happy thing.? Sign My Guestbook | Read Tributes Written November 30, 2011 1:55am by Kate Parker I keep trying to post an update and it keeps getting eaten by cyberspace, so I'll wait to write a real entry when I have access to my computer again versus this iPad.Joshua got discharged and we are hanging at the Ronald McDonald House tonight. We'll head home tomorrow, which has Joshua feeling pretty darn happy. Of course, it could also be that he is just jazzed about finally getting a bath for the first time in a month (or maybe that is why *I* am so happy, LOL). He is currently snuggled up in a blanket beside me, playing Minecraft on my computer. I'm going to get him his midnight meds and then convince him that it's time to go to sleep. I am SO looking forward to being in my own bed tomorrow night! Sign My Guestbook | Read Tributes Written November 27, 2011 6:49pm by Kate Parker Hey, guess what? Yep, still here. I am now hoping to be home on Tuesday, but it is hard to be convinced it'll happen. I have hospital fatigue. I don't know if that is an official condition, but if it isn't, it should be. I am quite sure there are many parents of kids with chronic illnesses who have been struck with the same combination of exhaustion + lower-than-normal tolerance level + desire to just be done here after a long hospitalization. I want to go home. I want to be with my family. I missed one daughter's 20th birthday and another daughter's 4th birthday while I've been up here. I don't want to miss a son's 8th birthday in a few days, too. Joshua is about as good as they are going to get him and while I don't feel as though he's where he *could* be with regards to pain control, I think it's probably close enough to take him home and tweak things from there. We were going to get out yesterday, but an error in communication resulted in the neurosurgeon thinking the palliative care doctor was discharging Joshua and the palliative care doctor believing the neurosurgeon was doing it, which meant neither specialist showed up at all and we were stuck. Then, late last night, Joshua had a "pain crisis" that sparked the question, "What am I supposed to do when I have given Joshua every medication I can and he is still hurting badly?" It was a question for the palliative care doctor to answer. Unfortunately, with it being a holiday weekend, no one was able to get ahold of Dr. T, and when the neurosurgical P.A. came by this afternoon, she asked if I was willing to stay an extra day so that I could talk directly with Dr. T tomorrow. After 25 days up here, what's one or two more days, right? Joshua Parker's Journal Written November 25, 2011 5:00pm by Kate Parker Black Friday update:? Still here.? Still making forward progress.? Yesterday was a good day.? Joshua just woke up at 3:15pm & is sitting up, playing with Legos, so I'm hopeful the afternoon & evening will go well.? His scheduled doses of oxycodone are now 35mg (every 4 hours) & his rescue doses are 40-60mg (he's been getting 50mg & can have a dose every 2 hours).? His dose of methadone will be increased to 15mg tonight since he is still having significant knee pain (neuropathic in nature) that makes settling down to sleep difficult & is not being well-controlled with gabapentin & oxycodone.? I'm mentioning the dosage amounts for my own benefit, so that when I re-read this down the road, I'll be able to see how things progressed.Last night, Joshie had a period of oxygen desaturations, where his O2 would drop to the low 80's before slowly climbing back into the 90's, only to drop again.? A nurse came in to ask if this was normal for Joshua.? I told her it had been prior to his surgery on November 3rd, but we hadn't seen any desats after surgery until just now.? I don't know if it was a one-night thing or if desats will again become Joshua's norm, but time will tell.? It's not something that I'm worrying about simply because we can't do anything about it.? There isn't much more to report at this point.? I think we're close to getting out of here, which will be bittersweet since saying 'goodbye' is not something I enjoy doing, but I *am* looking forward to getting home to my other kiddos.? Skyping with them has been fun, but it's never as satisfying as hugging them for real, and after 3+ weeks, I'm ready to be home again.? I am excited for the kids to see Joshua feeling better & not hurting as much as he was when we left for Portland. It's my hope that he is going to feel good enough to enjoy some activities with his siblings and that he'll continue feeling good enough to truly enjoy the Christmas season.I had my doubts that coming here was a good choice, especially when Joshua's pain seemed worse after his surgeries than before, but when I asked him, Joshie told me his head hurt more when there was a ball in it.? He said that his head hurt now, but it is different, and it was worse when there was a ball in there.? Even though it seems to me that his head pain should be considered worse now since he's needing substantially more pain medication to keep him comfortable, Joshua's perception is what matters, and if he says it's better now than it used to be, that's good enough to convince me.? One thing my little boy has taught me through the years is that it doesn't matter what should or should not be so... what matters is what IS.? So sure, maybe he should be in less pain, but he's not, so we will deal with the way things are & move forward from there.? Yesterday, on Thanksgiving, I reflected on what I'm thankful for.? Things like medication that controls Joshua's pain, nurses who love him & take care of him as though he is one of their own children, a private hospital room, friends staying in the room next door who make being here a lot more pleasant, & a Thanksgiving that we got to spend with Joshua (regardless of where we were) ranked at the top of my list.? Sure, I can wish a lot of things were different than they are, but I am truly beginning to see the blessings that have come about ONLY because Joshua has had the challenges he's had, and with that brings a peace that I've never felt before.? I'm not saying I'm happy that Joshua has a terminal diagnosis ~ of course that's not how I feel! I'm saying that I can see how God has used my little guy's difficulties to change me, to open my eyes to many things I had never really thought of (such as the suffering of children & orphans), and to grow me in ways I never anticipated, and for that, I am truly thankful.Sign My Guestbook | Read Tributes Written November 22, 2011 3:29pm by Kate Parker We are still here. Dr. T took the reins with regard to Joshua's pain management and as a result, we are making progress toward getting to the point that I can take my little guy home. His fentanyl dose was increased to 175mcg per hour and dilaudid has been dropped. We are working out what dose of Oxycodone needs to be given to enable Joshie to remain comfortable without a bunch of extra doses in-between scheduled doses, which are given every 4 hours. At this point, Joshua can have an extra 10-30mg of Oxycodone every hour, as needed, in addition to his scheduled doses. He is still getting gabapentin for nerve pain, too. It's crazy how much medication he is getting to keep his headaches under control. We are not aiming for "pain free" --- that is not going to happen, I've been told, and I am okay with that. I mean, obviously I would prefer something different, but at this point, I will be happy to get Joshua to where his headache is mostly-controlled most of the time. Dr. W has Joshua still on IV antibiotics to address the redness over the tract where his shunt tubing is. It would be possible to stop the antibiotics, but I think Dr. W does not want to take the chance that an infection would blow up if she stopped the antibiotic too soon because that would prolong our stay here by another couple of weeks and would involve two more trips to the OR. This is a situation where "better safe than sorry" is especially apt. Sign My Guestbook | Read Tributes Written November 20, 2011 1:00pm by Kate Parker I'm not sure how 3 days passed without my updating anything, but I'm here to rectify that situation!Joshua is out of PICU & has his own room on the regular pediatric floor.? All of his primary care nurses have been coming by to see him, let me get their picture with him, & say their goodbyes to him & me.? I won't pretend it is easy.? There are some nurses who have taken care of Joshua throughout his entire life, during every single hospitalization, and trying to express to them how thankful I am for everything they've done is almost impossible (it might be easier if I didn't start tearing up every time I tried).? How do you thank someone for loving your child?? For treating him the way they would their own?? For all of the "little things" they did throughout the years that made coming here easier for Joshua & for me?? It is hard having to say goodbye. Watching them talk with Joshua, telling him they love him & hugging him before they say goodbye is so, so sad, too, but I am sincerely thanking God for making a way for us to have this opportunity for closure ("us" being them & myself). I am thankful that anyone who wants to is getting the chance to tell Joshua goodbye & that I am getting the chance to thank these people who have made such a difference in my life.These nurses are the people who encouraged me to trust my instincts about my child. They taught me how to advocate for Joshua & they supported me when I summoned up the courage to disagree (sometimes vociferously) with the specialists. They have listened to my concerns & hugged me through good times & bad.? They believed in me before I truly believed in myself.? I have become who I am, in part, because of the collective experiences I've had at this hospital.? That's why saying goodbye is so difficult.? I'll miss everyone here.? They know Joshua.? They all have memories of him that make me laugh & smile when they tell me about them.? I think I am going to get a little book & ask the nurses to jot down a memory or two of Joshua... it would be something wonderful to have as a keepsake, I think.Anyway.... sigh.? Since Joshua came out to the floor, we've been working on adjusting his medications in anticipation of going home.? Thus far, he has been started on oxycodone & methadone and we've dropped lortab & hydrocodone.? The starting dose of oxycodone has been doubled. He is off his fentanyl PCA pump as of today, which is a good step forward.? We tried yesterday to see if he could go 4 hours between doses of oxycodone, but Joshua had too much headache pain to allow that, so while his orders are written for oxy every 4 hours, he is also allowed PRN (as needed) doses of oxy in-between.? He's still getting dilaudid.? The pain management & palliative care doctors (who are running the show with regards to meds) are hoping to get Joshua to where dilaudid can be used as a rescue medicine to get him over little speed bumps where his pain is temporarily increased (rather than a scheduled medication), while the oxycodone & fentanyl patches are used as the mainstays to keep things under control the majority of the time.? To that end, Joshua's fentanyl was increased again.? I'm not sure today that he will be able to get off needing scheduled dilaudid, but I think that if the oxy dose gets increased a little bit once more, then it may be possible, so we'll see what the doctors say tomorrow when they reassess everything.? The methadone Joshua receives is for nighttime so that I don't have to wake up every 2 hours throughout the night to give him pain medication.? He will still need meds every 4 hours, but knowing I will be able to get some real sleep in between those doses is a relief.Last night, Joshua developed redness over his shunt catheter, complained of belly pain, had a low fever, could not look skyward or lean his head backward without increased pain, & generally did not feel well.? A friend was here and she was the one who noticed the redness.? We mentioned it to the nurse, who looked it over & felt a call to the neurosurgeon was in order.? When she returned, she had paraphernalia to draw blood from Joshua's port for a CBC & culture and news that he was being switched from Keflex to Nafcillin, an antibiotic that is specific for things like septacemia & CNS infections. His white blood cell count was not elevated, which means he probably does NOT have an infection in either his port or the shunt, but he is being kept on Nafcillin for now & we're waiting to hear whether the culture grows anything.? The shunt tract is not as red now, but Joshua is still sleeping (11:45am), so I can't assess whether he is feeling any better yet.? I am relieved that it doesn't seem as though Joshua has an infection or that if he does, we caught it very early, but I seriously laughed at the idea that he might.? After all, Dr. D shaved almost half Joshua's head because he believes getting rid of all the hair is necessary to avoid infection.? How ironic would it be if Joshua wound up with a shunt infection despite that precaution, especially since he has never gotten a post-operative infection after Dr. W operates, despite the fact that she removes as little hair as possible??? I don't know now what day Joshua will get discharged, but I am thinking that if we don't have to make any more adjustments to his medication schedule & if he does not have an infection, tomorrow or Tuesday could be the day.? If something grows in his blood culture (which I'm thinking is not really likely since he's been on antibiotics for the past 17 days), then I have no idea how much longer we'd be here, but I'm not worrying about it right now.? As much as I want to get home to my kids, I want to make sure Joshua is as good as he can be before we leave so that he can enjoy as much time as possible each day.? Having good pain management is the key to that happening, so I want to be sure that everything is adjusted while we have the availability of the specialists on a daily basis.? It's a lot easier to modify his medications while we're inpatient than out (this I've learned), so I'm okay with staying until we're satisfied that everything is tweaked to give Joshua the best days possible. Written November 17, 2011 4:48pm by Kate Parker So yesterday it rained, and today it started out looking gray, but then the sun broke through the clouds & now everything is looking up! Dr. T (palliative care) is increasing Joshua's dilaudid dose & writing orders for methadone at night, which will eliminate my having to be up every 2 hours (cue the Hallelujah chorus). He also got ahold of Dr. R (pain management) & got dosing orders for oxycodone (and advice about the methadone). Ketamine will be used when we have those bouts of "I've given him everything we have & it's not enough." It won't really take his pain away, but it will dissociate him from the pain so he won't really care that he's hurting & it will buy me time to get more narcotics into him so that the pain can get controlled.Dr. W & her P.A. came over to see how "their boy" is doing & were completely thrilled to see him sitting up & smiling. Dr. W was blowing Joshie kisses & he was flirting & teasing back. I don't think I've ever seen her smile so big. It was just wonderful for her & the P.A. (and me) to look at Joshua and KNOW that yes, this helped & it was a good decision.So it is looking like the remaining puzzle pieces are falling into place & it may be realistic to think we'll be coming home on Sunday or Monday. I feel so relieved right now that I'm almost euphoric. There is a light at the end of the tunnel & I feel pretty sure it's not just the headlight of an oncoming train.? :)Sign My Guestbook | Read Tributes Written November 16, 2011 10:24pm by Kate Parker The past 36 hours have sucked.? Sucked my patience.Sucked my energy.?Sucked my peace.Sucked my confidence.Joshua had 3 consecutive nurses who were not regular PICU nurses; instead, they were "float" nurses and "resource pool" nurses.? The PICU is not their regular turf.? They didn't have experience with chronically-ill children, much less terminally-ill ones. At least, that's what I'm telling myself, because it gives them an "out" in my mind, which makes it easier to forgive them for their errors.I'm relieved that we have a "regular" tonight.? When I saw him sitting outside Joshua's room & realized he'd be taking care of my child for the next 12 hours, I could feel the tension uncoiling in my spine & I began breathing normally again.? I thanked God that I would not have to spend another shift interacting with a person who believed that Joshua is having some pain, yes, but his problem is primarily behavioral, & who would gossip behind my back (but within earshot) to another nurse about how I was contributing to my son's problem.? I thanked God that I would not have to spend another shift interacting with a person who ignored physician orders & therefore kept my son at NPO status (not able to eat or drink) for hours longer than he should have been.? I thanked God that I would not have to spend another shift interacting with a person who was so clueless she told our neurosurgeon that Joshua didn't actually need the PCA pump because if it weren't for Adam & me reminding him that he had a headache, he would never push the button.? Apparently, in that nurse's estimation, Joshua's fine & that whole "chronic pain" thing is a figment of my imagination.? I suppose the admitting diagnosis of "brain stem degeneration as a secondary complication of a chromosomal abnormality" wasn't convincing these nurses.? Neither was his DNR status.? The fact that he has almost 150 mcg per hour of fentanyl coursing through his veins meant nothing, and it seemed their schedule of administering pain medication every 2 hours to Joshua did not convince them that he had a documented & long-standing relationship with chronic pain.? *shaking head*? Yes, it really upset me.? Yes, it shook my confidence.? I'm insecure enough that having nurses believing *I* am the reason my child is laying in a hospital bed completely unnerved me.? Then God showed up in the form of Joshua's palliative care doctor, the neurosurgeon, & the Child Life specialist.? The doctors helped me formulate a plan of action for getting Joshua's pain controlled so we can go home soon & the Child Life specialist listened to me vent about what was happening & offered the support & reassurance that I needed, so I felt better.? So... all the drama aside, what's the bottom line for Joshua?? A few things.~ The x-rays of his feet did not show any new breaks.? We're assuming the discomfort Joshua is feeling is neuropathic in nature.? Since it can take several days for an increase in gabapentin to be effective, we're waiting for a couple more days to see if the 40% increase that was initiated two days ago will be enough to manage Joshua's sore feet, knees & booty.? If so, great.? If not, he'll either get another increase or will get switched to a different medication.? ~ Today's CT showed no change, which has Dr. W feeling more certain that Joshua's head pain is caused by the blood clot in his ventricle.? She said there is swelling around the clot, so she ordered one more dose of steroids to attempt to decrease the inflammation even though there hasn't been any apparent result from the previous doses.~ In order to get Joshua off the PCA pump, Dr. Wehby agreed (at my request) to increase Joshie's fentanyl patch dose.? We added another patch & stopped the basal rate of fentanyl.? He can still get bolus doses of fentanyl every 10 minutes, but with the implementation of a new medication, we are hoping to see his need for the extra fentanyl reduced.? ~ The new medication we've started is Ketamine.? It's a med that unnerves me a bit since it's an anesthetic agent & causes hallucinations & a feeling of dissociation ("out of body"), as well as cardiovascular effects and respiratory depression.? Joshua has been prescribed a small dose when his pain gets severe.? We can give him a dose every 5 minutes for up to a total of 5 doses, as needed.? Joshua received his first dose late this afternoon.? He did all right with it; it slowed him down, made him a little spacy, and at one point he said he felt yucky but he couldn't elaborate.? His fine motor skills deteroriated, too (he wanted to color but couldn't hold a pen properly & had trouble staying on the paper), but he didn't care.? When we talked to him, he didn't always understand what we were saying.? He did still say his head hurt & it progressed to him saying his head hurt super-bad, but his voice was groggy when he spoke & even though we knew he was feeling pain, it didn't really seem to be bothering him.? It was kind of weird, to be honest, but since his overall demeanor was happy & he was able to sit up & play with his legos & bionicles without any difficulty, we considered the medication trial to be successful.? That's about it for Joshua news today.? He is currently sleeping & resting comfortably.A few people have asked how Bethany & Hannah are doing.? Bethany saw the pediatrician today & had more labs drawn, all of which looked better.? That tells us her flare is finally under control.? The ped will send the results to Bethany's rheumatologist, who will determine a weaning schedule for the steroids so that we can slowly get her off of the prednisolone again.? She is still not acting like her normal self, but high-dose steroids will negatively affect any kid's mood, so we're not worried about it.? I'm confident Bethie will perk up as her steroid dose decreases.? She is also going to be seeing an ostomy doctor to discuss why her g-tube site has never healed properly & constantly oozes gunk & leaks everywhere.The only lab result that has come back for Hannah is the test for Rett Syndrome, which was negative.? Hannah has actually improved and is acting happy & interactive again.? Megan called me last week so I could hear Hannah laugh & when I Skyped with the kids & talked to Hannah, she smiled & bounced around in her high chair as she looked around to try & find where I was at.? Our pediatrician has no explanation for why Hannah stopped eating & had the major regression that she did, nor any explanation for why she's suddenly improved again.? At this point, we're not questioning it.? We're just thankful that she's doing better than she's been for the past few 3 months.To wrap this up, Joshua will move out of PICU tomorrow & then, once we have him completely off the PCA pump & have finished tweaking his meds & dosages, we'll get to go home.? I am looking forward to being on the regular floor & having the opportunity to see more of Joshua's primary care nurses.? Oh, and having a window!? It'll be nice to not be in "the cave" that is PICU anymore.? Most of all, I'm looking forward to taking Joshua HOME!? :)Sign My Guestbook | Read Tributes Written November 15, 2011 12:18pm by Kate Parker Today marks day 12 in the PICU.? Joshua's longest stay in intensive care.? He won't be moving to the regular pediatric floor today, either.? The good news is that he's stable.? He's just not "good" enough to transfer out of here yet.The plan for today is to keep pain under control, attempt a continuous tube feed beginning at 15 ml/hr (half an ounce... we'll stop if he gets pukey like he did yesterday), and meet with neurosurgery & pain management doctors.? My goal for the meeting with Dr. R (pain management) is to get Joshua's regimen of meds tweaked in such a way that I won't have to be up every 2 hours at night.? I don't know if he'll have any other ideas or plans for treatment, but I'm open to hearing what he might suggest.The steroids Joshua received didn't seem to make much of a difference in his headache, which points more toward the valve being clogged with blood than the blood, itself, being the cause of his increased pain.? I haven't yet spoken with the neurosurgeon's P.A, so I don't know what they want to do.We'll be taking Joshua downstairs for x-rays of his feet to see if he broke bones when he accidentally kicked the bed rails when his head was hurting & he was thrashing around.? He's been using ice packs on his feet for the past 24 hours & telling us that he thinks he broke his feet, so the PICU doctor said today that we should do x-rays to see if maybe Joshua is correct.? We wouldn't do anything other than maybe splint his feet if they are broken, but it would be good to know one way or the other, and since he's able to break bones so easily as a result of osteopenia, I'm glad we're checking it out.There's a lot running through my head as I sit in PICU.? Being here affords a person the time to ponder life & questions in a way that they might not have if they were at home, involved in the busyness of their regular life.? It's not always a good thing having so much time to think.? I have a post swirling in my brain & I am trying to gather the pieces together so I can write it down & get it out of my head, but I haven't been able to get it all wrapped up yet.? I'm hoping to be able to do that soon.My last thought for now is a reminder that I read this morning & was comforted by:? "Do not fear, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior." (Isaiah 43:1b-3a)Then I was reminded of this song, which also gives me peace.? always, I will update again after I've spoken with doctors & know what the next step is.Written November 14, 2011 12:59pm by Kate Parker The neurosurgical P.A. came in to chat & check Joshua over. She wanted to give him Decadron & we agreed to try one dose since it usually takes a couple doses before Joshua freaks out (steroid psychosis), so we're hoping that just one dose can help reduce a bit of the swelling in his brain without causing the yuck side effects. She said that she & Dr. W talked & their consensus is that this is caused by the shunt, for sure. She said that bleeding causes irritation for everyone & everyone would get a headache from the amount of blood Joshua has in his ventricle, but he obviously can't tolerate it at all (which is no surprise to her) & that is why he's reacting with this huge pain response. She said they want to give the Decadron (which has been given now) & wait for Joshua to declare himself ~~ he'll either start to improve as the blood gets resorbed or he'll get worse. If he gets worse, they'll take him back to the OR to re-do the shunt. It'd be great if Joshua's brain would settle down without more surgery, but neurosurgery is ready to do it if they need to. Soooo...... that's where we're at. The P.A. said that he wouldn't be Joshua if he didn't have a few speed bumps along the way, so we'll deal with this speed bump & get him going back in the right direction again.? She feels confident we'll get him to where we want him to be (happier & less pain) in time. Sign My Guestbook | Read Tributes Written November 14, 2011 11:43am by Kate Parker (copied & pasted from my facebook status update just now)CT this morning showed the bleeding has stabilized, vents are the same size (that means nothing since Joshua doesn't have hydrocephalus ~ we would not anticipate his vents getting huge during a shunt malfunction) & everyone is waiting for neurosurgery to make a decision about what to do. Joshua was up until 3am and needed 104 mcg of fentanyl per hour (25 mcg is the dose for an adult man) IN ADDITION TO his 137 mcg/hr patches (and his hydrocodone, lortab, dilaudid & neurontin) to get his pain under control. Anyone want to guess what the heck happened to cause this massive jump in suffering? If it's not the VP shunt, then I have no idea. Sign My Guestbook | Read Tributes Written November 14, 2011 12:57am by Kate Parker Joshua has been having increasing head pain & nausea as the hours go by. The PICU doctor came in & put him back on a 20mcg basal rate on the PCA pump plus another 15mcg every 10 minutes. Neurosurgery was called & they want a CT done at 5am. She thinks he will probably have to go back to surgery to have the valve replaced on the shunt because she thinks the blood in his ventricle has probably clogged it (the CT Joshua had at 5am today showed a slight increase in the hemorrhage in his ventricle, which shouldn't be a big deal since it's not like it's a huge bleed & will self-resolve, but there's enough blood there to block the shunt). Adam is staying up here tonight because we have all the markings of a very long night ahead of us as Joshua gets more? uncomfortable & less able to be distracted from hurting.? Written November 12, 2011 12:57pm by Kate Parker Joshua is back in his PICU room & resting somewhat comfortably.? Little man got sick & threw up, which did nothing for his belly & head pain.? He's getting a ton of fentanyl, though, & I anticipate things settling down soon.? Right now, Adam is laying beside his baby brother & they're watching Kung Fu Panda on television.? Joshua is half-dozing, half-paying attention, and the show is a good distraction.I've uploaded a picture of his new haircut. As you can see, the doctor went a bit overboard on the hair removal.? I realize it's just hair, but for the first time ever in 28 surgeries, one look at Joshua will scream, "I had brain surgery," or, at the very least, "Something happened to me."? I've never been jazzed about attracting the stares of strangers.? Now it will be unavoidable & I don't like that at all.? Ultimately, it doesn't matter & I realize that... it's JUST HAIR.? Sometimes, though, my feelings don't match what I logically know to be true, and this (surprisingly enough) is one of those times.? Maybe it's just that this seems like an unnecessary "insult".? Maybe I'm just so accustomed to Dr. W & her conservative approach to hair removal that today's buzz job is that much more shocking.? I don't know.? But it still bothers me that he cut so much off because it strikes me as overkill.In other, not-important-at-all news, Joshua had surgery on this day 3 years ago, too.? Crazy that 3 years ago, we were doing a spinal cord detethering (it was his 12th surgery) & now, here we are again on November 12th, converting a ventriculostomy to a VP shunt.? Sign My Guestbook | Read Tributes Written November 12, 2011 11:32am by Kate Parker Dr. D just came in & said he's done & Joshua will be coming off the table pretty soon & going back to PICU. He said it was a bit more challenging than he'd anticipated, but he put in a valve that should open Joshua's vents a bit, which would be helpful for his functioning. He also warned me that he had to shave "quite a bit of hair" and didn't want me to be surprised. Hmm... should be interesting to see.? He brought the tubing down Joshua's right side & used an open method of visualizing the tube as he brought it into the peritoneal cavity (Dr. W does a tiny puncture in the skin & does a blind feed, but this doc said he feels more comfortable visualizing it), so he'll have a bigger incision in his belly, too.I'm relieved it's done, but I'm feeling sad for Joshua because it sounds like this guy beat him up a bit. I'll post a picture once we're back up in his room & he's resting comfortably. Please pray for his pain to be decreased & easily controlled. My #1 priority of having Joshua NOT hurt is still intact. I want him kept peaceful... please join me in praying that this will be achieved without difficulty. Thankfully, we have an INCREDIBLE nurse (Gordon) today ~ he's one of the few nurses that I trust so much that I allow my brain to relax & not think about Joshua's med schedule for 12 hours (the entire shift) because I KNOW Gordon will take care of it perfectly. I'm thankful we have him taking care of Joshua today & that I can focus on being a mom & not a nurse for the rest of the day. Sign My Guestbook | Read Tributes Written November 12, 2011 8:43am by Kate Parker I think I need to clarify something for everyone: the shunt Joshua is getting this morning isn't going to relieve him of his headaches (unless some miracle occurs). He doesn't have excess CSF causing his headaches. What he has is pain ~ most likely originating from his kinked brain stem ~ and his neurosurgeon thought that maybe, if she placed another shunt in his brain (in addition to the one in his spine), it would reduce some pressure & volume in Joshua's brain, which might allow for some reduction of pain. The externalized drain (ventriculostomy) has shown some improvement for Joshua, which is why he's getting a VP shunt today. But it really would take a miracle for this shunt to take ALL of Joshua's pain away. No one is thinking it will. The ventriculostomy didn't, so there's no reason to believe a shunt will. What we're going for is a REDUCTION in pain intensity so that Joshua can continue to enjoy his life as much as possible. If we reduce the intensity of his pain, he doesn't need as much medication, which allows him to participate in life more & gives us more time before we need to increase dosages of opioids (which will ultimately lead to his being "snowed", sleeping all the time &, eventually, cessation of breathing). But he doesn't have hydrocephalus & this VP shunt is not going to be a cure for his pain (barring a true miracle). I've gotten emails & comments that made me realize some people have the wrong idea & that's my fault ~ I apologize for not being more clear.? I'll update after his surgery is over. Written November 12, 2011 12:22am by Kate Parker Surgery will take place tomorrow because Joshua's been bleeding from his ventricle & CSF stopped draining from the catheter.? Only blood was coming out.? He had a head CT to check placement of the catheter & to see if the bleed was confined to the ventricle or not.? It is, so the neurosurgical P.A. said it was okay & they would take care of it tomorrow when they do the shunt.? What taking care of it means, exactly, I don't know.? Maybe they'll cauterize whatever vessels are bleeding & flush the vent to get rid of the blood since that can clog the shunt valve & really, we don't need a malfunction 5 minutes after it's placed (grin).? Joshua's headache has been pretty bad tonight & the dose on his PCA pump was increased to help deal with that.? Hopefully, once the shunt is placed & draining properly again, his head pain will decrease again.Anyway, surgery is early & it's now past 11pm, so I need to go to bed.? I'll update after surgery is over.Sign My Guestbook | Read Tributes Written November 11, 2011 1:33pm by Kate Parker I only have a moment, but wanted to update that Joshua will have surgery tomorrow morning at 7:30 to convert his ventriculostomy to a VP shunt.? He'll come back to PICU afterward & we'll transfer him to the regular pediatric floor a day or two later, depending on how he's doing.I'll update more later when I have time to do so.Sign My Guestbook | Read Tributes Written November 10, 2011 4:51pm by Kate Parker It's looking like Joshua will get a VP shunt. His pain medication will be tweaked, too, so that I (hopefully) won't have to be awake every 2 hours to give him medication at night once we go home. Meds like oxycontin & methadone are two possibilities to switch him to that have been mentioned.Oh, and he just stopped breathing for 22 seconds. Shaking him got him going again. Nope, I'm not kidding. He's done it 3 times now. Pray that this apnea junk stops.? I want his siblings to be able to see their brother again. I didn't bring him up here thinking that I would not bring him home, and it's really important that I get to bring him home again.Written November 10, 2011 2:36am by Kate Parker Sorry for such a late update.Joshua woke up happy & saying his head felt good.? That was very exciting to everyone.? He did have a headache later in the morning, but it resolved pretty quickly.? He spent the day laying in bed, not raising his head off the mattress still, but willing to roll onto his side or onto his back when we needed him to (such as for a diaper change), which was an improvement over the past couple of days.? In the afternoon, his headache returned & by dinnertime, it was pretty severe.? Even with medication & the PCA pump, he was hurting & when the nurse checked his ICP, it was in the high 20's.? Later in the evening, it was up to 36.? Several hours later, it was still high at 28.? The entire time his pressure was high, his head was hurting.? It makes the doctors here in the PICU suspect that Dr. W will want to put in the shunt.? Dr. W is out of town until Tuesday, though, so we have to wait for her return before we do anything.? She does have someone who is available to operate if the need arises, but I don't trust anyone else but Dr. W to be inside Joshua's head at this point in his life, so if the suggestion is made to let Dr. D put in the shunt, I will probably ask to wait.? I would prefer knowing the best person possible is continuing to take care of Joshua, and Dr. W nets that title if for no other reason than she's the only neurosurgeon who has been inside his head all his life, so she knows him better than anyone else.? Joshua had some blood in his CSF today, too, which is an abnormal situation.? The neurosurgical P.A. suspects the catheter inside Joshie's ventricle is rubbing against the walls of the vent since they're so small.? We agreed there is nothing we can do about it, so there's no reason to get overly concerned.? I'm not, but it is still a bit disconcerting to see blood inside a catheter that I know darn well is not supposed to have blood in it.Other than that, we're just hanging in & waiting to see how things develop.? PICU got overcrowded, so we are now sharing a room & that has its challenges.? Mostly, it's difficult when Joshua likes to be up later at night & be very chatty, but I have to try to keep him quiet because our roommate & his mom are sleeping.? It's frustrating to not be able to let Joshua "be" and to not do our routines because we have to be polite and stay quiet, but I recognize that we don't have a choice, so I'm trying to be a good sport about it.? The PICU staff thought it would be great to put these two boys together since they're the same age (6 weeks apart) & both have a form of spina bifida & both live in southern Oregon.? I don't think it occurred to them that it might be psychologically painful for me to be sitting here all day long listening to a child my son's age who can talk clearly & function typically & is ultimately going to get better & go home to reclaim his life of running around with his friends & riding his bike & going to school.? He'll grow up & graduate high school & get married & have kids (if he wants to).? Meanwhile, my son won't do any of those things.? He can't do any of the things this other little boy does right now.? So yeah, the "in your face" reminder is fantastic (sarcasm).? I know no one intended it.? No one probably even thought about it.? And maybe I'm just being too sensitive.? But it still sucks.Sign My Guestbook | Read Tributes Written November 8, 2011 4:25pm by Kate Parker We're seeing tiny signs that are encouraging.? Joshua hasn't needed to push his button for the PCA pump very often today.? Instead of pushing it 4-6 times per hour, he's pushed it only 4 times in the past 6 hours.? The basal dose on the pump has been cut in half & he doesn't seem to be bothered by the reduction.? His ICP (intracranial pressure) has been increasing, but I'm not yet sure what the significance is of that (for Joshua specifically) & neither are the doctors.? The neurosurgical P.A. came by & said we're going to watch things for the next couple of days to see what kinds of trends emerge ~ it would be great if we could correlate pressure changes with spikes in headache pain (or periods of time when he is feeling good), as that would be really helpful for making a decision about a VP shunt.So.... that's about it for now.? I think everyone is feeling a little encouraged by the decrease in need for the PCA pump, but it seems apparent that no one is throwing cartwheels or celebrating yet (myself included).? Time will give us a better idea if this is going to work to improve Joshie's quality of life.? I'm sure hopeful that it will, but am trying to not get my hopes up so that I'm not disappointed (too terribly) if it doesn't. Sign My Guestbook | Read Tributes Written November 8, 2011 1:19am by Kate Parker Things are tentatively okay tonight. Joshua has had some bouts of intense pain and some other times of saying his head does not hurt at all, which is very exciting since having him pain-free has not occurred in a very long time. Right now, as long as he does not move at all, he feels all right. I'm not sure what this means- what the significance is, if any - I'm just reporting how things are tonight. Written November 7, 2011 7:04pm by Kate Parker Little man woke up in recovery fighting mad & hurting horribly. They gave him 120mcg of fentanyl to chill him out & handed him his PCA button, which he's pushed regularly. We got him to his room & gave him more meds (vicodin & straight hydrocodone) & now he's relaxing. His ICP (intracranial pressure) is low, which means this is probably not what is causing his pain. Dr. W suspects the kinked brain stem is to blame & there is absolutely nothing we can do about that. Since we've got this drain in place, we're going to ride it out for a few days & see if draining at different rates helps his headache. If something helps, that'd be fantastic. If nothing helps, well... then there's nothing really left to do other than pain management. What's my prayer? That the shunt will help & he'll start having less head pain. That this will work since it's our last chance.Sign My Guestbook | Read Tributes Written November 7, 2011 4:54pm by Kate Parker Joshua is out of surgery & heading to recovery. He did fine during surgery & is now minus one more tooth. The anesthesiologist removed his extremely-loose front tooth rather than risk it coming out when she intubated him & him aspirating on it. She gave it to me, along with some of his hair.? Dr. W said we'll see how he does in the next few days & then make a decision regarding placement of a permanent shunt.That's all I know for now.? He'll be in recovery for a bit & then we'll head back upstairs to PICU again.Sign My Guestbook | Read Tributes Written November 7, 2011 3:22pm by Kate Parker Joshua is back in surgery again. This time we had a funny moment ~ when the anesthesiologist gave Joshua some Propofol to get him to sleep before taking him to the OR, he wouldn't go to sleep! He was playing a game on his iPad & he did NOT want to stop, so he just kept fighting the Propofol and playing away. It was hilarious watching the anesthesiologist's reaction as she waited for this small little boy to succumb to the drug she'd given him. What can we say? Joshie is tough! He didn't want to sleep, so he didn't! LOL He wasn't fully unconscious when they finally took him away, but he was very relaxed & didn't fuss.I'll update again when he's out of surgery.Joshua Parker's Journal Written November 7, 2011 10:19am by Kate Parker At about 1pm, Dr. W will be taking Joshua to the OR to do a ventriculostomy with an ICP monitor. The pressure will be monitored for a day or two & if draining extra fluid helps, a VP shunt will be put in. If today's procedure doesn't help, the monitor will be pulled, the dura stitched shut & we'll talk with Joshua's pain management doctor for ideas for better pain control before we come home. So... please pray this helps Joshua with his pain and the "ball in his head" feeling and that he comes through the surgery without any difficulty.? I'll update later this afternoon.Sign My Guestbook | Read Tributes Written November 6, 2011 5:13pm by Kate Parker There's not really anything to update.? Joshua is still hurting badly enough that he pushes his PCA button regularly. He's sleeping more than usual, a direct correlation with the increase in narcotic.? When he's awake, he is quiet 98% of the time, laying down while playing his iPad or with some legos.? There is 2% of his day where he's happier & displays more energy, but it's short-lived.? If he sits up, it's only at a 45-degree angle (never completely upright) & only for about 15-20 minutes before he says his head really hurts & he lays down & pushes his PCA button yet again. Dr. W came in today & said she is going to try to get Joshua on the OR schedule for tomorrow.? She isn't sure anymore what, exactly, she is going to do.? Maybe an externalized VP shunt.? Maybe an internalized VP shunt.? Maybe an ICP monitor to determine what is happening with the pressure in his head before she decides if a shunt would be helpful or not.? Maybe something else completely if she decides there's something different she wants to try.? Maybe nothing at all. She told me to let her think about it overnight & she'd let me know tomorrow what, if anything, she is going to do.? She said she wants to make sure that she doesn't miss something if there is something left to try.Sigh.? Several nurses have come by to hug me, love on Joshua, share memories, shed tears & say goodbye.? I am so glad they have the opportunity to tell him 'farewell' & I am thankful that I have the chance to tell each of them how much I appreciate everything they've done for Joshie (and me) through the years, but it's so incredibly bittersweet to know that our shared experience of taking care of Joshua while he's in the hospital is coming to a close.? I will miss them so much when I don't get to come see them on a regular basis.? I realize that probably sounds crazy to anyone who hasn't had a chronically-ill child, but it's the truth of how I feel.? The professionals at Emanuel have become an extended family of sorts to Adam, Joshua & me and it will be sad to lose them while also losing my son.? I'm so blessed to be learning how many people truly love Joshua... what a gift that has been to receive while we've been here.Sign My Guestbook | Read Tributes Written November 5, 2011 10:32am by Kate Parker Joshua had a peaceful night, with no significant apnea or bradycardic episodes, which means I was able to sleep, as well, despite the PICU being a brightly-lit & noisy place.? I feel human again, which is always helpful from an emotional point of view.The plan for today is to keep things the same with Joshua's PCA pump ~ it is currently set so that he gets a basal dose of 10mcg/hr & he can push the button every 10 minutes to get 10 more mcg each time (for a total of 60 mcg per hour in addition to the basal dose of 10 mcg, which is on top of his 137 mcg/hr from his patches).? Yesterday, he was pushing the button almost as soon as it lit up.? We'll see how it goes today. Joshua Parker's Journal Written November 4, 2011 7:30pm by Kate Parker Our Dynamic Duo (neurosurgeon & her P.A.) came in again & said that if Joshua's headache isn't improved by Monday, they will take him to the OR to put in a VP shunt, which they will externalize (keep outside his head). They'll drain off fluid and if it helps, they'll take him back to the OR a 3rd time to internalize the entire shunt system. If it does not help, they'll remove the shunt & call it a day. Dr. W told Joshua that she got one of the balls out of his head, but it seems he has two in there, so she has to go get the other one out in a few more days. He nodded & seemed satisfied with that. Sign My Guestbook | Read Tributes Written November 4, 2011 11:31am by Kate Parker Joshua & I both slept from 5-8am.? He is awake & very, very quiet.? He pushes the button for medication from his PCA pump every 10 minutes.? I've never seen him look so dejected.? It is obvious that he had expectations this time & he is so sad that things didn't go as he had thought or hoped they would.? It is breaking my heart because I can't fix this for him.? I can't make it better or even tolerable.? All I can do is tell him I'm sorry it didn't work the way we wanted it to.I got him removed from telemetry & we took out the foley catheter.? Now the only things he has attached to him are an IV line going into his port & a pulse ox on his finger & his extension tube going into his g-tube.? He's happier not having a bunch of cords tangled all around him & they weren't needed, anyway, so I'm glad to have gotten rid of them.? Any little thing that I can do to make him less sad is something I will do.? The PICU staff has been extremely accommodating in my efforts to make Joshua comfortable, which I am most-thankful for. His head pain has not decreased.? The incision site is not bothering him at all ~ the pain is still concentrated in the top of his head, just like it was pre-operatively.? He has been receiving anti-inflammatory medication & his head has been kept elevated, so it's doubtful that this is a reaction to swelling.? He also receives Valium to relax his neck muscles, so it's probably not that.? I am confident this is the same head pain he's had for months simply because he describes it the same way, it's in the same location & it makes more sense to assume it's the same old, same old than something new.? What makes me the most sad about this situation is that Joshua is sad.? I've watched him go through painful surgeries & other procedures and maintain his smile.? He has always believed that surgery would help him ~ as have I ~ and I realized during the night that it has been that belief that has made everything worth the pain.? It's been worth the heartache of putting my child through 25 surgeries ONLY because I've believed every single time that it would make a difference for him, that it would improve his situation.? This last one, #26, I was willing to do ONLY because JOSHUA was convinced it would help him.? I thought that maybe I didn't have enough faith... that maybe he knew something I didn't... that maybe God was going to DO something (not heal him, but reduce his pain level) through this surgery & that is why Joshua was adamant about my calling Dr. W.? I believed because my son believed.? And now, to see his faith in this process completely shattered... it hurts.? A lot.? It's probably good that Dr. W won't do anything like this again because I don't think Joshua would ever believe me if I tried to tell him that surgery would help him to feel better.I'm not upset with Dr. W.? She has been a brilliant physician & she has been an integral part of keeping Joshua alive for a lot longer than the average child with his chromosome abnormality.? She knew going into this that it may not help at all.? She told me that.? I opted to hold out hope because she's said that many, MANY times before & each time she's been wrong ~ surgery HAS helped.? I guess it stands to reason that she'd be right eventually (weak grin).I'm not mad at God.? I know He has a plan.? He has all along.? He knew what the outcome of this surgery would be & I don't feel anger that He did not step in & alter the results.? Sure, that would have been gratifying, but ultimately, I guess it wasn't part of His plan, so He didn't, and I can accept that because I trust & believe that His plan is better than mine, even when I don't really LIKE what I'm seeing. I am fully convinced He is just as sad as I am, though, simply because He's MY father & I know darn well that if my heart is breaking for my child, the Lord's is breaking for His.I'm not praying anymore for his life to be prolonged.? God knows I don't want Joshua to die. I really don't want to live my life without being able to hug him & hear his laugh.? I want so badly to watch him grow up... to know if he would look more & more like Adam as he got older (he seems to be heading in that direction)... to watch him become a man & get married & have children of his own? But last night I realized that my pain is not going to end, but his can, and no matter how much I want to keep him with me, I can't wish for him to stay if it means he is always going to hurt. What I wish is that it didn't have to be this way at all.Sign My Guestbook | Read Tributes Written November 4, 2011 5:00am by Kate Parker Joshua woke up about an hour ago (2am). Has been laying quietly, but obviously sad. I finally convinced him to tell me what is wrong & what he said broke my heart: "I don't think she took the ball out. I think it's still in there." He is pushing his fentanyl button every 10 minutes, trying to get comfortable. One of our favorite nurses came in (we named Bethany after her) & held Joshua's hand, cried, told him how much she loved him, hugged me, and told us both goodbye. I asked Joshua if he thinks it'll be time to go see Jesus pretty soon & he looked at me & nodded. Now please excuse me while I go cry. Written November 4, 2011 12:01am by Kate Parker Joshua is having a pretty good night, all things considered.? He got his arterial line & extra IV removed, which I know will make him happy once he's coherent enough to realize they're gone.? His blood pressure has been running higher than normal & when he wakes up briefly, it soars.? His temperature is up, too, but that can be normal post-operatively, plus it definitely is normal for Joshua to fluctuate wildly with his temps, so no one is worried about it.? He is receiving all of his regular meds on the same schedule I have been giving them (how awesome is THAT?? No one put him on a typical hospital schedule, which is so accommodating of them ~ seriously) and he also has a PCA pump that allows me to push a button giving him 10 mcg of fentanyl every 10 minutes, if necessary.? I'm being very conservative with the extra pain meds since we don't want Joshua to stop breathing, but it's nice that he has the pump and once he's more awake, he can control when the button gets pushed & that will be great for him.They're letting me control how we monitor things, so his settings are lower than they would typically be.? As a result, he's alarmed only two times since we got to PICU (tachycardia once & low respirations once).? His 2 day nurses were amazing (we've had one of them before & he's a great guy) & tonight's nurse is equally good.? She is super nice to Joshua & is taking wonderful care of him.? I know I say it every time we're up here, but I love this hospital.? The chaplain met with us in pre-surgery & came again to hang out in the waiting room for the last half-hour of surgery.? One of the child life specialists who we absolutely adore came by to chat & will be back again tomorrow.? She's going to make plaster molds of Joshua's hands for me and I am looking forward to that.? It will be one more tangible "thing" to have once he's gone.? Adam & I have had nurses, housekeepers, cafeteria staff, the chaplain, child life & a couple doctors stop us today to say "hello" and catch up on how Joshua is doing.? Coming here is like coming home to family.? I am so relieved & happy (yes, happy) that I am here and have the opportunity to thank everyone for everything they have done for Joshua & me over the course of his life and that everyone has the chance to tell Joshie goodbye.? They deserve that after everything they've done to make his life happier.Sign My Guestbook | Read Tributes Written November 3, 2011 5:02pm by Kate Parker Joshie is out of surgery & heading to recovery, which means he got extubated successfully. His brain stem is now kinked (bent) & Dr. W gave us a couple pictures of it so Adam & I could see what it looks like.? The back of his head was all scarred over, too, but that was expected. Dr. W explained everything she did, then breathed a big sigh and said, "Okay.... so now we wait & see...." Praying this makes a difference to help reduce his pain.? Sign My Guestbook | Read Tributes Written November 3, 2011 2:27pm by Kate Parker Joshua is still in surgery.? I just figured I'd take a minute to give a few more details.? When I posted last, he'd been in the OR for about 45 minutes.? It sounded like it would take awhile for the anesthesiologist to have Joshua ready to proceed with the actual procedure since he was planning to put in an arterial line + a couple peripheral IVs so that he'd have them ready if the need arose.? The anesthesiologist explained that if Joshua has any serious problems, he won't go to recovery & he won't get extubated; instead, he'll go straight to PICU & stay on the ventilator.? There is the very real risk that giving Joshua post-operative pain medication on top of his fentanyl patches will cause him to stop breathing.? If that happens, we will breathe for him via a ventilator until we can wean him off the post-op pain meds & get him back to his "normal" doses of pain meds, at which point we'd extubate him.? I realize that goes against his DNR status, but honestly, if I wanted to let him die from the side effects of pain medication, I could have just put him in the hospital locally & let his pediatrician give him higher doses of fentanyl.? I wouldn't have had to put him through surgery to accomplish that.? The goal of this surgery is to alleviate some of Joshua's pain so that he can enjoy the remainder of his days before passing away peacefully.? Yes, there's still a chance we will need to give him increasing amounts of fentanyl & that will eventually cause him to stop breathing as a side effect, but I don't want to do that as a post-operative thing.? The anesthesiologist & I spoke at length about this & we agreed that it was reasonable to treat apnea that is caused by pain medication in the immediate post-operative phase.? So... if Joshua gets so much pain medication that he stops breathing, we'll put him on a vent until he's healed enough from surgery that we can wean down the post-op pain meds & get him back to his baseline.? I feel like we need to give him a fighting chance if this situation arises, so I'm glad it got discussed & figured out ahead of time.He went to sleep easily in my arms after receiving a bit of Propofol.? Adam & I were kissing him & telling him we loved him, and the last thing he said as his eyes drifted shut was a sleepy, "Love you."? Dr. W's P.A. hugged me tight & whispered to me that they can't leave him hurting like this... they just can't.? The OR nurses & anesthesiologist promised they'd take good care of him & then we went out.It took the anesthesiologist 1.5 hours to place all of his lines & get Joshua stabilized for Dr. W to begin surgery, which began about 20 minutes ago (I just got that update).? Surgery itself is anticipated to take only a couple of hours, so I anticipate hearing that it's done around 2:30pm.? I'll update again if I hear anything between now & then.Written November 3, 2011 1:57pm by Kate Parker He is in surgery. Please pray. Sign My Guestbook | Read Tributes Written November 2, 2011 7:25pm by Kate Parker After his MRI today, we had to take Joshua to see Dr. W to get his shunt reprogrammed (the MRI magnet changes the setting during the scan).? Since we were there, she looked at his MRI & decided that she is doing his surgery tomorrow rather than next Monday.I'll write more later with more details, but wanted to let people know now that surgery will be tomorrow morning.Sign My Guestbook | Read Tributes Written October 31, 2011 9:48pm by Kate Parker There are times when things are so insanely overwhelming that it's ridiculous & I lose the ability to feel stressed-out because, quite honestly, I simply shut my emotions off.? This is one of those times.Joshua's hanging in & as long as I dose him with narcotics every 2 hours without delay, his pain level stays manageable.? He's scheduled to see Dr. W on Thursday afternoon & surgery is tentatively scheduled for Monday, November 7th.? I did miss a phone call from the surgery scheduler today, though (I had Hannah at an appointment with her surgeon), so I'm not sure if something has changed.? I'll let you know when I find out.Bethany's gotten more ill despite being on steroids to control her arthritis flare & her doctors are growing increasingly concerned.? Her labwork today was worse than last Friday's, so she'll go in tomorrow to get more blood drawn & get cathed for another urinalysis to see if anything grows out in either culture.? The concern is that she may have an infection that we're missing (aside from the MRSA blister on her finger, which we've been treating aggressively since last week) in addition to the JRA flare. If she does not show improvement soon, she will be airlifted to Portland for treatment.Hannah's scheduled to get a g-tube on Wednesday.? Charley will be checking her in at our local hospital at the same time I am checking Joshua in for his MRI in Portland.? Her tube can't be placed via endoscope like Joshua & Bethany's were, so she'll have a larger incision as her surgeon goes through her belly to her stomach instead of using laparoscopic procedure.? We are hoping this can be an outpatient surgery & the surgeon said that as long as Hannah's pain is being managed satisfactorily, he saw no reason we would have to keep her in the hospital overnight since we obviously have a lot of experience with g-tubes & would know what to do.? In other Hannah news, we're still waiting for the results of her genetics testing to see if her big regression/neurological changes are caused by some genetic condition.The thought that Bethany may wind up flown to Portland at the same time Joshua is facing the most-serious brain surgery of his life makes me shake my head in a "You have GOT to be kidding me!" way.? But hey, I started 2011 with both Joshua & Bethany in the hospital, so why not end 2011 the same way, right?? (yes, I'm employing my sarcasm font)? I don't know what purpose there is in having 3 of my kids seriously ill or compromised at the same time.? I can't really wrap my mind around any of this anymore.? My priority has to be Joshua, followed extremely closely by Bethany, and Hannah bringing up the rear.? As for my other 6 kids who, thankfully, are healthy, all I can do is hug them, love them & pray they understand that this crazy time isn't going to last forever.? It can't, right? Written October 29, 2011 1:23pm by Kate Parker Joshua's MRI is scheduled for Wednesday, November 2nd.? We'll leave on Tuesday & stay at the Ronald McDonald House (our usual haunt when we're in Portland).? He'll have the scan on Wednesday, then will see Dr. W on either Thursday or Friday (Wednesday is an OR day, so it won't be then), and she will schedule the surgery after that.? My hunch is that surgery may be Monday, November 7th or Wednesday, November 9th, but I won't know for sure until we see Dr. W.Thank you for the prayers for my family & most especially for Joshua.? I am extremely nervous about this trip to Portland even though I do believe it is the best choice for my little boy.? I want him to have the chance to die peacefully, yes, but I also want to bring him home to do it.? I don't want him to die in Portland, away from the rest of his family, & I don't want to be completely alone without my family & friends when he passes away. Ultimately, I know God has this under His control, but while I truly do believe that, I still have the jitters because I don't know what is going to happen.? I do feel like this whole situation has been brought about by Him. I wasn't going to call Dr. W at all, but did because Joshua begged me to (first time he has done that).? Our pediatrician wrote me a note saying she thought there was a 99% chance Dr. W would say there was nothing that could be done & I fully agreed with her, though I actually believed the chance was 100%.? I didn't think there was any way our neurosurgeon could do anything.? But Dr. W & her P.A., motivated by their love for Joshua & their unwillingness to let any child suffer the way he is, changed their minds from what they'd told me months ago & offered something that could possibly make a difference, allowing Joshua the opportunity to die peacefully rather than in excruciating pain.? I believe this situation coming about where Joshua asked me to call Dr. W & she offered to try something is an answer to the prayers of everyone who has asked God to ease Joshua's suffering.? Am I fully confident that Joshua will survive the surgery?? No, not at all.? But I trust that whatever happens, it will be for a purpose & God is in control of it, & I will continue believing that because it's really all I have.? My hope rests in Him & in knowing that He can do all things, including allowing the MRI & surgery to go perfectly so that the desired outcome is achieved.? That is what I will be praying for.? Sign My Guestbook | Read Tributes Written October 28, 2011 10:04pm by Kate Parker Today brought a lot of news for Joshua.? Dr. W's physician's assistant called me while I was at Dr. S's with Bethany & Hannah (who have crazy news of their own, but I'll stay focused on Joshua here) to tell me that she & the neurosurgeon are sickened by the level of pain Joshua is in & they want to do some palliative procedures to try & mitigate some of that pain. He will be going to Portland to have a special MRI that will map his brain so that Dr. W can take him to the OR to use a GPS-type of machine ~ stereotactic procedure ~ to place a ventriculoperitoneal (VP) shunt in his extremely-tiny ventricles. This will help remove the pressure from inside his skull while the LP shunt that is in his back will continue to remove pressure from his spine. Dr. W will also evaluate the MRI & discuss with me whether doing a repeat chiari surgery like she did 6 months ago to clean out built-up scar tissue & shrink back the cerebellum would be beneficial for Joshua. If so, she would do that surgical procedure at the same time she places the shunt. Obviously, this is not without significant risk, but the alternative is to watch Joshua suffer pain that will increase exponentially each week until he dies. I was told that NO ONE wants to see Joshua die like that (I agree; neither does anyone in my family). Every medical professional is hoping he can die from his brain stem ceasing to work, as that would be a peaceful, painless death. The clincher for this decision came from Joshua, himself, as he was the person who BEGGED me to call Dr. W (I would not have done it, otherwise). When I got home from the pediatrician's & told Joshua that? Dr. W wanted me to take him to Portland to have pictures taken & then she was going to try to help him feel better & not hurt so much, he yelled, "YEA!!!" and grabbed ahold of me in a tight hug, and he wanted to know when we were leaving. The fact is that this is what Joshua WANTS. He has never asked for surgery before, but he is now. After I hung up with the P.A. & relayed the conversation to Dr. S, she hugged me tightly. She was crying with relief that Dr. W is going to try something. This will NOT fix Joshua. This will probably not prolong his life in any way. What Dr. W will be aiming to do is reduce the pain Joshua is experiencing so that he can die peacefully. And IF he dies during the MRI or surgery or during the recovery period, at least he won't be hurting. We are prepared to take that risk because, as I said before, it is what Joshua wants.Please pray for financial provision to cover the days Charley will have to take off from work through this process (he'll have to take a couple days off to take Hannah for surgery locally and then a couple more days to come to Portland for Joshua's surgery) & also for the unexpected expenses we are incurring for medication (this week, I shelled out a little over $400 for meds).? The P.A. said Dr. W told me, "Plan to be here for awhile," so I'm guessing it'll be a few weeks or more. Adam & Charley will come up to be there the day of surgery, but they'll have to go back home the next day (assuming it goes well) because Charley has to work and Adam has college classes & it's almost the end of the term, so I will be alone with Joshua 250 miles from home. I will not want to leave Joshua AT ALL (I'll be able to take a quick shower in the bathroom in his room) since he will be so incredibly fragile (and I won't have a car, anyway).? A friend has offered to do laundry for me each week & I am so thankful for that!I've heard that some people think Charley hasn't been working since the end of July & that we've been living off donations that were given, but that is not true.? Charley was able to take 4 weeks off from work & we were able to do some fun activities with Joshua during that time (things like going to the park & buying ice cream for everyone at Dairy Queen) and yes, that was the direct result of the generosity of people who read about Joshua & wanted to help us; however, Charley has been back to work since the last week of August.? I was tremendously grateful for the outpouring of support that allowed Charley to have a month off to spend time with his son.? I would be grateful for help now simply because having a child with a terminal condition is expensive, especially when medications change weekly & insurance refuses to cover the cost, and I have 2 other children who have developed medical conditions, & the associated expenses of taking care of the 3 kids (ie: extra gas for the car, medical supplies, even the higher cost of electricity to run Joshua's oxygen concentrator & pulse ox & feeding pump) are stressful. I admit that I am overwhelmed by everything happening with Joshua, Bethany & Hannah.? I feel shaky & my heart is racing as I write this.? It would have been challenging to deal with each child's medical issue individually, but to have them all having serious problems simultaneously is so insane that if it weren't my own children this was happening to, I would probably doubt the story if I heard it.? If you read back through Joshua's life story the past 5.5 years, you'll see that asking for help has not been something I've done except once, 3 months ago.? If I were not going up to Portland next week for an indefinite amount of time, I would not ask for help now.? If you want to help, my paypal address is kpmomof7@.? Processing the P.A.'s phone call is making my head spin.? I had accepted that Dr. W couldn't do anything more for Joshua.? In fact, I recently posted a journal entry about how difficult I was finding it to not call our neurosurgeon when I knew Joshua was at the point I normally would have done so, yet I didn't call because I knew it would be futile.? When I called her yesterday & left a message on her voicemail telling her what Joshua asked me to, I ended it by saying that I knew she could not DO anything & I was not asking her to, but I had to call because Joshua asked me to & I could not tell him, "No."? I didn't expect her to call back.? That she did, telling me the things she did, blew my mind.? Joshua was adamant that Dr. W could help his head feel better & now he is happy knowing that he is going to go to Portland to see his doctor.? Maybe he's right & she will be able to ease some of his pain.? All I know is that because Joshua wants this so badly, we are willing to give it a try.? There is something very valuable to be gained if Dr. W's procedures work & not a lot to lose in trying.? I mean, yes, if Joshua died, it would be devastating, but he's going to die anyway, and? my family would rather know he died peacefully with us doing what he wanted than to refuse to try & watch his pain skyrocket until the day he dies.? There's really no quality of life with that & it is absolutely horrifying for Charley, our other children & myself to watch happening.? We are hopeful that this surgery will allow Joshua to die more peacefully.? Yes, I realize that sounds crazy, but honestly, if you were here living with my little boy, you would understand very quickly why Dr. S, Dr. W, her P.A., Charley & I are all in agreement with Joshie that attempting surgery is a good decision.? I pray we will have the outcome we are hoping for.Sign My Guestbook | Read Tributes Written October 27, 2011 1:04pm by Kate Parker At 2:30 this morning, Joshua told me that he felt like there is a ball in the top of his head and he wanted me to ask Dr. S (ped) to take pictures of his head (MRI) to see what is wrong with it so we can fix it.? He said I could make him a bed in the car so he could lay down to drive to the hospital and then we could do the pictures to see the ball and then Dr. W (neurosurgeon) could take it out.I didn't know what to tell him at first.? I told him there wasn't a ball in his head, but he insisted that I email Dr. S to ask her to take pictures, so I did, with him laying beside me making comments and directing me what to be sure to tell Dr. S.? That seemed to satisfy him for a bit.About 40 minutes later, Joshua said he hopes there's not a ball in his head. I told him there wasn't. He wanted to know what is happening, then, if there is no ball. I said he has a lot of pressure against his brain. He asked what pressure is. I squeezed his hand between both of mine and told him that was what was happening to his brain. He thought about that for a moment and then said, "Well, I don't know how a ball would have gotten into my head, anyway." Then he asked how that could happen. I told him it couldn't, and it hasn't, and that I promise he does not have a ball inside his head. After hearing that, he rolled onto his side and went to sleep.This morning, I woke to an email from Dr. S saying that if Joshua needed picture proof that there is not a ball inside his head, she would order a CT scan for him.? I told Joshua that if he he still wanted a picture, Dr. S would show him.? He asked me again, "Is there a ball in my head?"? I told him that no, there was not.? He said then that he doesn't need a picture; he believes me.? He still wants me to call Dr. W, though, because he wants her to help him.? I think Joshua remembers that when his head feels "like this" (however that is), we take pictures and then Dr. W does surgery and then he feels better.? I think he is struggling to understand why we aren't doing anything this time, especially since his head hurts so much.? I wish I had a good answer for him.? I wish I could explain why we can't fix things this time.? Mostly, I wish this were not happening.? A friend said that "Watching a child suffer...especially when pain control is really all that is left...brings a person to their knees as nothing else does." I can attest that her statement is 100% true.Written October 26, 2011 10:45pm by Kate Parker Last night was a hard one.? Joshua's pain began waking him from sleep, necessitating doses of medication every couple of hours.? He is having what looks like seizures ~ it's bursts of electrical activity in his brain caused by compression of the brain tissue.? His arms come up & he shakes. It's like he's trying to play the drums really, really fast.? It happens primarily at night & he sleeps through it, but it's disturbing to watch.? These episodes began a few weeks ago (I don't know if I mentioned it or not) & are increasing in frequency.? Joshua's day continued to be difficult, as well, with him needing a lot more medication than usual.? I made another trip to the pharmacy to pick up the newly-compounded, more-concentrated lortab & we are hopeful that it will help Joshua to feel more comfortable.I think that we have reached the point where Joshua will not be pain-free outside the hospital. At his best, he still has a headache.? It ranges from "bad" to "a humongous really bad lot".? At "bad", he will sit at the computer or play a game on the Wii & he will talk to people around him & even smile and giggle sometimes.? At "a humongous really bad lot", he is on his knees, his forehead pressed to the floor, moaning with pain & occasionally crying, "Ow... ow... ow!"? At those times, when I've given him everything I can & he is still hurting so terribly, I ask if he wants to go to the hospital.? I remind him that Dr. S can give him medicine that will make his head stop hurting.? Joshua always takes a moment to consider my offer before adamantly refusing.? I'm not completely sure what he is hanging on for, but for some reason, he's not ready to let go, and I am respecting that. I need the decision to go to the hospital to be his choice.? I know that the IV fentanyl he gets there will eventually reach a high enough dose that it will cause respiratory failure (ie: he will stop breathing) if his brain stem doesn't stop working as a result of being compressed first (and that, too, will cause his death).? I will have to choose between giving Joshua medication that will keep him comfortable but whose side effect could lead to his death OR withholding the full dose of medication, which will keep him hurting but also keep him alive until his brain stem gets too compromised to function anymore.? To me, the decision is obvious ~ I will medicate my child so that he does not suffer.? But because the consequences of making him completely pain-free are so dire, I do not want to be responsible for choosing when Joshua goes to the hospital.? I don't want to ever look back and wonder if he might have had a few more good days if I'd let him stay home longer.? I don't want my children to ever look back & question the decisions I made on their brother's behalf.? I don't want to ever feel that I hastened my child's death.? I want to know that when I finally took Joshua to the hospital, it was because he was ready to go, not because I had reached the point where I couldn't stand watching him hurt anymore.? And let me tell you, my son is *a lot* tougher than I am when it comes to bearing up under pain!? How he keeps going is truly beyond my ability to fathom.? But until he is ready to give up, I won't, either.? I can't.To keep Joshua as comfortable as possible at home, I'm giving him dilaudid or lortab every 2 hours ~ alternating between the two so he gets each medication once every 4 hours.? He's also getting neurontin, erythryomycin, zofran & ranitidine at scheduled times throughout the day to help his nerve pain, to help his stomach empty (he's on a continuous tube feed of either formula or water), to prevent nausea & reduce stomach acid so that when he does throw up, it doesn't hurt his throat.? Oh, and the fentanyl patches, of course.? They're the backbone of his pain management.? You'd think that'd be enough, but as his pain level jumps upward, we'll have to either add more opioids or change up what we're using to keep things under control.An online friend & I were talking on the phone a couple weeks ago. She told me that on the day Joshua dies, God is going to give me something to show me that Joshua is okay, that he is with Him, and that he is safe. She said she didn't know what God was going to give me, but it would be something from the Lord to give my heart peace.? When she told me that, I fell apart, crying. My biggest fear, which I hadn't talked to anyone about, is the fear that Joshua won't be okay. That even though he's in heaven, where I know everything is perfect & wonderful & whatnot, he still won't be okay... and the fear of, "How will I know he's okay? How will I know he's safe? Who's going to be taking care of him if I'm not there to do it?" overwhelmed me. I know those aren't rational fears, but not much about my feelings is rational nowadays. So hearing that God is going to give me something, a sign, that tells me Joshua is okay, with Him, & is safe, was a message straight from the Lord to my heart.? Through that & another couple things that have happened, I do not believe Joshua will be healed on earth.? For whatever reason, it seems God is going to heal Joshua when He takes my little boy to be in heaven with Him.? I don't know why & I'm not asking that question right now.? Instead, I'm looking at the good patches in each day as gifts because that is what they are.? I am focusing on how God is answering some prayers for me before Joshua dies. I wanted Joshua to have time in our new house & God has given me that.? He gave Joshua a week of good days, in fact, and Joshua was able to do things he hasn't done in months, like go outside & draw with chalk.? He has answered the unspoken cries of my heart through special friends who love me & are holding my hand through this. He has made a way for me to have a tangible piece of Joshua to carry with me every day ~ a Thumbies charm that I will wear on a chain around my neck.? While I still wish God would heal my son & allow him to grow up here, I appreciate Him letting me know that that isn't part of His plan.? It's not the answer I wanted, but I still trust that Jeremiah 29:11 is true.I don't know how much time we have left, but I feel an ache in my chest most days as I soak up Joshua's hugs & "cuggles" & laughter. He sings, "Mommy mommy mommy, I love you, Mommy!" almost every day. He says things that melt me, like "Oh, I love cuggling with you!" and "You are the bestest mommy ever!" I am trying to memorize every single inch of him & every aspect of his personality.? I desperately wish there was a way to bottle how he smells & how it feels when he hugs me, wrapping his little arms around my neck & squeezing tight.? My heart hurts already with the knowledge that our time together, physically, is growing shorter. I have seriously wondered if my heart might stop beating when his does. I have wished that it would, simply so that I don't have to live one moment without Joshua here, but I know I still have lots of reasons to keep going & I will focus on those when the time comes.? Still, I don't know how I will be anything but utterly wrecked without my little boy.? It's something I am trying to not focus on, but as I watch him stop what he's doing to cry, "ow ow ow" & hold his head repeatedly throughout the day, it's getting increasingly difficult to not think about what is coming our way & I find the tears are coming more & more easily.? Sign My Guestbook | Read Tributes Written October 25, 2011 10:35pm by Kate Parker Sorry for the delay in updating.? I've been busy with unpacking & getting settled in our new home, taking care of Hannah (who has not improved & will be having surgery to place a g-tube ASAP), taking care of Bethany (who is in the throes of a s-JRA flare), schooling Emily, David, Sarah & Isaac, being "Mom" to everyone (and all that that entails), and taking care of Joshua, who is okay as long as I can keep his pain under control.His pain level has jumped considerably, which is to be expected as the pressure in his head continues to increase.? He throws up every day after he wakes up ~ again, another side effect of the increased intracranial pressure.? I picked up almost 3/4 of a gallon of Lortab yesterday.? It blew my mind to think that Joshua will go through that amount in one month now, but that's where he's at.? We're changing his fentanyl patches every 60 hours instead of every 72 & increasing the dose as needed, which is becoming more often.? He's also getting dilaudid for the times when he needs more medication but can't get more lortab yet.? When he's comfortable, which is when his headache is probably at "just" migraine level (he is never completely pain-free now), Joshua is happy & enjoying activities like playing games on his Wii or iPad, drawing chalk pictures or "cuggling" (snuggling) with his mama.? He is happy being with his brothers & sisters and being able to play with them.? When his pain gets bad, I ask him if he wants to go to the hospital & thus far, he always says, "No."? Tonight he asked me to call Dr. S, his ped, to ask her if he could have another fentanyl patch.? I did & she agreed that we could go up again, but in the interim (it takes 12 hours for a new patch to be fully effective), she increased his dose of dilaudid.? Joshua is feeling very bad tonight, with an unrelenting headache & now he says he feels "yucky", most likely from the lortab.? I need to cut this off and go be with him, but didn't want to leave anyone hanging.? Thanks for checking in and praying for Joshua.Sign My Guestbook | Read Tributes Written October 19, 2011 6:27pm by Kate Parker Just a quick entry to let you know Joshua is doing all right.? He is enjoying being in our new home & being surrounded by his family.? We are all soaking up every moment that we can of being with him, treasuring the days & the smiles & the cuddles as the gifts they are.If you have prayed for Joshua to be given more good time with his family, know that God has been answering your prayers & also know that I appreciate you praying that for him.? He may not have a lot of time left, so I am exceedingly grateful for every good moment that comes our way.Written October 16, 2011 1:23pm by Kate Parker We increased Joshua's fentanyl patch dose last night.? Unfortunately, the increase still wasn't enough to make him pain-free; however, it is really important to my family that Joshua spend some time in our new home, so we're discharging both kids today. I'll keep using lortab & dilaudid for Joshie, but it seems we may be moving closer to his last admittance to the hospital. I can't deal emotionally with that right now, so that's all I'm saying about it. Please, those of you who pray for Joshua, PLEASE pray that God will give him some good times during each day where he can enjoy life with his brothers & sisters. Please pray for some happy memories to be made in the new home. Please pray for the medications we have to be sufficient for covering his pain for much longer than anyone is anticipating. Please pray we can have more time without Joshua suffering. Please pray. Sign My Guestbook | Read Tributes Written October 15, 2011 7:46pm by Kate Parker Discharge didn't happen as hoped for.? Joshua developed a horrible headache that needed IV pain meds last night despite our trying his other meds (lortab, dilaudid) first.? We changed his patches & when he woke this afternoon, he still had a bad headache.? An extra 25mcg of fentanyl knocked him out and he's sleeping again, and we're waiting to hear from his pediatrician to get directions for the next step.Right now, all I want is to be able to remove the pain he feels while still giving us some quality time each day.? Seeing Joshua hurt & not having any way to make him feel better is a helpless feeling that I absolutely hate.? It's not fair that he should hurt... we can't fix ANYTHING anymore, so dang it, let's make sure he's not in pain, at least!? I know his doctors & the nurses share my goal.? No one here is okay with Joshua hurting & everyone wants him to be kept comfortable.? The challenge arises when we think we have his pain managed only to realize that nope, we really don't.? Then there's some scrambling to regroup & figure out another plan.? That's where we're currently at.? As such, he couldn't get sent home today.? Sign My Guestbook | Read Tributes Written October 14, 2011 9:28pm by Kate Parker Sorry for the lack of updates.? Having 2 kiddos in the hospital doesn't allow for much downtime.Joshua's better as far as fluids & pain management are concerned.? He's having chills tonight despite being bundled in two blankets & he has a stuffy nose, so apparently he's picked up another bug despite our very-stringent hand-washing/hand sanitizer use.? Sigh.? I am hoping this does not impede our anticipated discharge tomorrow.Hannah is being fed by NG tube & has gained a kilogram already (2.2 pounds). We had to keep her awake from 2am onward last night so that she could have an EEG this morning.? She also had an upper GI with small bowel follow-through this afternoon.? Yet more blood was drawn so a genetic test for Rett Syndrome could be done.? It will be a few weeks before we have the results for all of the metabolic & genetic testing.? I am hopeful those results will bring a definitive diagnosis.Charley, Megan & some friends from church got our family moved to our new house today.? I am grateful that it went well (as far as I know) & that I should be able to get home with the kids tomorrow & thus be able to help unpack and arrange everything.I'd like to be able to talk about how I'm feeling & dealing with everything, but honestly, I am pretty numb.? God has a plan & all of this is working out according to His plan.? That's all I know.? That's what I'm holding onto to get through this latest hiccup.Written October 13, 2011 12:01pm by Kate Parker Joshua slept all but 30 minutes yesterday & woke up about an hour ago.? He had a headache, so he got some IV fentanyl & that helped somewhat, but not completely.? I'm currently waiting to get permission to give him some dilaudid so we can keep him comfortable.He's been getting IV fluids & we'll start him on a 1 ounce per hour feed of pedialyte beginning whenever the nurse brings a pump in here.? I offered to get ours from my truck & take care of it for her, but was told they have to use their equipment (must be a new rule, as we've used our feeding pump many times in the past), so now I'm waiting.? It's not a big deal whether we get feeds started now or later, so I don't mind the delay.Hannah is... complicated (hey, that totally makes her one of my kids!).? Due to the severe regression she has experienced in the past 2 months, Dr. S is concerned.? Labs were drawn this morning to be sent away for testing of various metabolic diseases.? Hannah will be having a brain MRI at 11am and an EEG tomorrow.? Transport is here, so I'll have to update more later.? Sign My Guestbook | Read Tributes Written October 12, 2011 4:35pm by Kate Parker After having a fantastic day yesterday, Joshua woke up and began vomiting. After he was done, he fell back to sleep. Then he did it again. I switched him to clear fluids, slowed his feed down and had to leave to take Hannah to the pediatrician's. Hannah got admitted to the hospital due to her extreme refusal to eat that has resulted in significant weight loss. She is having many other symptoms that have our doctor wondering if she is just so low-functioning that she would starve herself or if there is something wrong with her brain that is causing her to starve (maybe something metabolic) or some illness.Joshua is also getting admitted for Iv fluids and pain meds. We do NOT anticipate this being the hospitalization where he does not go home again, but would appreciate prayer for that. I hate typing on my iPod, so will update later when I have my computer. Sign My Guestbook | Read Tributes Written October 11, 2011 9:27pm by Kate Parker Joshua has had a better day today.? With the permission of our pediatrician, I added another fentanyl patch & again increased his dosages for lortab & dilaudid.? For today, at least, that seems to have been what was needed.He has been happy & playful for the majority of the day.? This afternoon, he got out of bed to help decorate a "cwit mit cwee" (Christmas tree ~ it's one of his dad's pine trees in a planter) with lights, garland & ornaments (he had asked if he could have one in his room) & he has a satisfied grin every time someone mentions his pretty tree.? Dr. S says we'll chat daily & fine-tune Joshua's meds every day, as needed.? I know I've said it a lot, but I really am incredibly thankful to have the best pediatrician ever taking care of my children, especially Joshua.The owner of the therapy center where 6 of my kids receive speech & occupational therapy came over tonight. She observed Joshua & watched him eat & the difficulty he had with that, and then she gave me suggestions for things to do to help Joshua be able to continue safely eating & drinking.? Her visit today was such a gift.? I was so happy that she got to see Joshua in a good mood, & she was such an encouragement to me, too. I spent some time after she left reflecting on how God has absolutely surrounded me with THE most-amazing group of people to help me take care of Joshua.? I am so, so grateful & my child is incredibly blessed to be loved the way he is by so many.Written October 10, 2011 6:25pm by Kate Parker Joshua doesn't look good today & he isn't feeling well at all. Dr. S says that whenever we're ready to move him to RVMC (local hospital), just say the word. We're not ready to do that yet. We'll go when we can't control his pain here at home anymore.? Once we switch to hospital living, it will mean my other kids won't get to see their brother on a daily basis & I am in no rush to do that to them.? Obviously, we will do what is in Joshua's best interest.? For now, though, being at home with his family is what's best.? I picked up new prescriptions for him today so we can give higher doses of lortab & dilaudid. When I saw that the pharmacist had put cute little stickers on all 3 bottles of medication, I began crying a little.? The ladies who work there came around the counter to hug me & they were teary-eyed, too.? Everyone who knows Joshua cares so much about him.? I'm thankful he is so loved, not only by me & my family.There is only one goal right now: Joshua's comfort.? We want him to not hurt, even if it means he ends up sleeping more than he's awake.? I'm still praying he'll wake up feeling good enough to snuggle next to me & singsong, "Mommy, mommy, mommy... I love my mommy!" like he's been doing as of late.? I really would like to feel his arms around my neck hugging me, too.I underestimated how much this was going to hurt ~ not being able to DO what I have always done when he got this bad (call the neurosurgeon to schedule MRIs & surgery).? There are no words for how helpless I feel.? Thank you for praying for Joshua & the rest of my family. Sign My Guestbook | Read Tributes Written October 10, 2011 2:16am by Kate Parker Just a note to document a new development:? Joshua now says he is having trouble swallowing.? He has to work to get food or liquid down, including his own saliva. I asked if he felt like things were getting stuck & he nodded.? Difficulty swallowing is a chiari symptom, caused by pressure against the brain stem.? There's nothing anyone can do about it except manage this new symptom.He looks so sick, I tear up when I look at him.? My heart hurts to see him feeling so lousy.? I'll be calling our ped tomorrow to let her know what's going on & to see what she suggests.? I'm not expecting her to have any magic answers, but maybe she'll know something we can do to help Joshie to feel better.Sign My Guestbook | Read Tributes Written October 9, 2011 12:53pm by Kate Parker We're seeing a progression in Joshua's pain.? For awhile now, it's seemed that he hasn't been having more pain so much as growing tolerant to whatever level of fentanyl he was getting.? That was to be expected, of course, as the body gets used to opioids & requires increasing doses to achieve the same level of pain control.? So we'd increase his dose of fentanyl, he'd sleep for a day while his body adjusted to the new level, & then life would go on with very little breakthrough pain requiring medication to control.That's not what is happening now.? Despite increasing Joshua's fentanyl dose 6 days ago, he has continued needing lortab & dilaudid every day for breakthrough pain & he is needing more doses every day.? He is also still getting neurontin around the clock to control neuropathic (nerve) pain in his legs.? His doses of medications have been increased, but he is still having bouts of severe pain that take me hours to get control of.? From 5am to 8am this morning, for example, I gave Joshua 2 doses of lortab, 1 dose of dilaudid, 2 doses of neurontin, 1 dose of erythromycin, 1 dose of ranitidine & 1 dose of zofran.? Finally, at around 8:30am, he relaxed enough to go back to sleep.? He is currently still sleeping, albeit somewhat restlessly. I can't honestly say this increasing pain is a surprise.? It is what I have been expecting will happen.? I don't know if I've explained before what we (Joshua's doctors & myself) anticipate will happen to lead to & ultimately cause his death, so forgive me if this is a duplication of information you've heard before.? In case I haven't explained, though, I will now because I would like those reading here to have an understanding of what is happening, physiologically, to cause Joshua's decline.If you've read here for any length of time, you know Joshua has a connective tissue disorder that causes him to overproduce scar tissue inside his body, especially in areas where he's previously had surgery.? Because he has spina bifida & chiari malformation, the two primary areas he has had surgery are his brain and his lower spinal cord.? Neither of those places is a great depository for excess scar tissue, which adheres itself to the structures in the area it forms & blocks the flow of cerebrospinal fluid (CSF).? CSF circulates around the brain & spinal cord & protects them from impact.? When scar tissue blocks the fluid from moving freely, it has the same effect that kinking a garden hose does ~ pressure builds up behind the blockage & the structure on the other side doesn't get what it needs.? With regards to a garden hose, the structure that suffers is the plant that gets no water.? Inside the body, the structure that suffers from a blockage of CSF at the site of a chiari surgery is the brain.? A blockage of CSF at the site of a tethered cord surgery affects the spinal cord primarily & the brain secondarily.Now, to add further complication, Joshua has another condition called Intracranial Hypertension, also known as Pseudotumor Cerebri.? This condition causes the pressure within Joshua's cerebrospinal fluid to be too high, which then leads to his brain & spinal cord getting "squeezed" by the fluid as it circulates.? This, of course, causes tremendous pain & other symptoms.? Joshua had a shunt placed in his back at the end of 2009 to drain some of the CSF into his peritoneal cavity (abdominal area, but not into his stomach), which results in less fluid moving around his brain & spinal cord, which then results in less pressure & less compression of those important structures. As long as the CSF flows freely, the shunt works beautifully to prevent the increased pressure within his CSF from causing problems.? But as soon as scar tissue creates a blockage (either partial or complete), then there is pressure caused by the blockage, itself (think kinked garden hose) & by the increased pressure within the CSF caused by the Intracranial Hypertension.? It's kind of a double whammy, unfortunately.To further complicate the situation, Joshua has a chromosome abnormality that affects his brain stem.? Technically, he has two chromosome abnormalities ~ a partial duplication of his 2nd chromosome & a deletion of an entire gene on his 15th ~ but so little is known about the chromosome 15 deletion that we don't consider it in the equation very much.? Both of these abnormalities were caused by random mutation, meaning they were not inherited from his father or me.? The chiari malformation was inherited ~ I have it and 3 of Joshua's siblings also have the condition, as well ~ as was the connective tissue disorder. Since connective tissue problems are associated with the chromosome 2 duplication, though, it is presumed by our geneticist to be the reason why Joshua's case is substantially worse than anyone else in our family.? That's another "double whammy".The chromosome 2 duplication is associated with brain stem dysfunction.? Specifically, things like breathing, heart rate, blood pressure, temperature & digestion are all affected.? Anything your body does without you thinking about it is controlled within your brain stem.? And unfortunately, it is one part of your body that cannot be repaired in the event something stops working properly.? Humans have not yet obtained the ability to fix a dysfunctional brain stem.? If it stops functioning the way it's supposed to, then all we can do is treat the symptoms & hope things don't get worse.? There is no procedure, "fix", treatment or cure.Chiari malformation also affects the brain stem.? This condition is caused when the bottom portion of the brain, the cerebellar tonsils, gets squeezed through the opening where your head joins your neck.? The brain tissue squeezing through the hole presses against the brain stem, blocks the flow of CSF by acting like a cork in a bottle & causes pain and a bunch of other symptoms, such as speech, balance & coordination difficulties, as well as coughing, choking, gagging, & trouble swallowing.? Put chiari & a chromosome 2 duplication together and you can understand where there could be a problem, as the chiari pressing against an already-dysfunctional brain stem can't be good.? Add in a propensity for overproducing scar tissue in the head/neck & back from a connective tissue disorder, which makes the symptoms of chiari worse & necessitates more surgery to get the brain off of the brain stem, and the problem turns into a big mess.? THIS is the stage on which the play of Joshua's life is set & has been acted out for all of his life.? So... what do we anticipate is going to happen?? As scar tissue continues to build up at the base of Joshua's head, it will increasingly block the flow of CSF.? This will increase the pressure inside Joshua's skull & spinal canal, which will result in his brain & spinal cord getting "squeezed," or compressed.? The pressure will push his brain downward, which will result in his chiari being "re-formed" as more of his cerebellum gets shoved out of his skull & into the top of his neck. The brain tissue will once again press up against his brain stem and we will see symptoms of brain stem dysfunction increase. We will also see an elevation in Joshua's pain.? Eventually, his brain stem will not be able to withstand the external pressure & instead of not working properly, it will cease to function at all, & Joshua will stop breathing and his heart will stop.? No one knows how quickly Joshua will move from where he currently is to the end.? Historically, he has shown a gradual overall decline & when scar tissue creates a large blockage, he nosedives in terms of pain & functioning.? Then he has surgery to remove the scar tissue & get his brain off his brain stem & re-establish the flow of CSF and we go on.? Back in April, however, it was decided by Joshua's team of specialists that he could not tolerate any more surgeries.? He'd gotten too fragile & everyone agreed there wasn't any more room for surgical intervention.? As painful as it was to agree with that decision, I knew it was the right one.? Dr. W, Joshua's amazing (AMAZING!!!) neurosurgeon, performed one last brain surgery to get as much of Joshua's brain off of his brain stem as possible so that she could buy him more time.? I consider that surgery a huge success since it took place on April 25th, almost 6 months ago.? And now that Joshua is having increasing pain & increasing symptoms indicating his cerebellum & brain stem are being compressed, I wish I could call Dr. W & schedule another surgery, but I know it would not be in Joshua's best interest to do so.? Historically, surgery would restore Joshua to *almost* the same level he had been prior to when he tanked.? To restore Joshua to almost the level he's currently at would not be beneficial to him.? Sure, it could potentially give him more time with us (assuming he survived the surgery & the recovery), but his quality of life would not be good enough to make the risk of surgery worth taking.? That is why Dr. W decided she could do no more & why I won't beg her to reconsider.While I want to give Joshua the opportunity to die in his sleep at home, if his pain gets to the point that I can't manage it at home, he will be admitted to the hospital where he can get more-frequent doses of IV pain medication to keep him comfortable.? Dr. S (Joshua's pediatrician) & I have talked extensively about this plan & I am just as relaxed with the idea of Joshua dying at the hospital as I am with him dying at home (not that I'm okay with him dying at all, but it is more & more apparent that unless he is the beneficiary of a God-given miracle, his healing will come when he leaves this world for heaven).? The highest priority for everyone who loves Joshua is that he not suffer.? Wherever he needs to be to make sure he is kept comfortable, he will be.? For now, that is at home, but if this pattern of needing increasing amounts & increasing frequency of pain medication continues, I won't be surprised if we wind up moving Joshie to the hospital.My friend, whose son died after struggling with an extremely-rare disease that caused him a tremendous amount of pain, told me several months ago that there are worse things than death. At the time, I could only understand what she was saying in theory; now, I am beginning to understand it in a practical way.? Watching Joshua hurt more & more makes my chest ache, especially when nothing I do seems to bring him relief or that relief takes hours to obtain.? Seeing his good days dwindling to good hours makes everyone in my family sad even though we are still thankful for those hours.? When Joshua is happy, he is very, very happy, but when he's not, his misery is so deep that it makes me wonder if he'll ever reach that place of happiness again.? Charley, Megan, Adam & I looked at Joshie sleeping this morning & agreed that he's on a downward spiral.? We may be wrong, but it feels like he's entering the beginning of the end.... like the scar tissue in his head is now blocking CSF at least partially & we are once again seeing the signs that, historically, have led to a complete nosedive for Joshua.? The difference is that this time, we can't offer surgery as a temporary fix, and we don't know how long it will take before his brain stem stops working.? Thankfully, though, we have all the pain medication Joshua needs at the ready.? In the end, I think that's the only thing that's going to help at all.? Am I ready to let him die?? No, but I'm getting there.? I will never be ready to live without my son, but like my dear friend said, there are worse things than death, and watching Joshua hurt ranks as one of them.? I am ready to see him not hurt anymore, and if death is the only way to permanently achieve that, I am getting closer to accepting it.? Written October 6, 2011 10:32pm by Kate Parker When walking the path of caring for a dying child, there are times when a parent has to consider the course they’re on & decide where they want to go from here.?? I reached such a crossroad last week and, after much contemplation, prayer & discussion with a trusted friend who has survived the death of her own precious son,? I reached a decision that I am at peace with.? Up until now, Joshua’s pulse ox, which he wears while he sleeps at night, has had the parameters set so that an alarm goes off when his oxygen drops below 90% or his heart rate drops below 60 beats per minute.? When he has had respiratory distress, I have jostled him awake so that he could consciously choose to breathe again & then I had to remind him to breathe every few seconds while I waited to see if his brain stem was going to begin working again or not.? Each time, he has begun breathing again, but as you may recall, the last major incident lasted 5 hours.? The fear& stress during the times where Joshua’s brain isn’t reminding him to breathe are tremendous.? Every 15 minutes or so, I take a break from reminding him to breathe just to see if his brain is going to take over & stimulate his body to inhale and exhale on its own.? When I see his chest not moving & the oxygen saturation level dropping like a stone in water,? I have to prod Joshua yet again and once more tell him he needs to breathe.? It’s exhausting for him & he eventually reaches a point where he doesn’t want to go on, which strikes terror into my heart because, let’s face it, I am never going to be ready to let him go.? As such, I struggle greatly at that moment between wanting to respect his desire to rest & wanting to force him to keep going.? Joshua always develops an excruciating headache due to oxygen deprivation during these episodes & I always feel terrified that giving him more narcotic pain medication is going to suppress his breathing & he’ll never start up again on his own.? It’s a terrible, horrible, frightening situation to be in.I want to do what is best for Joshua, and the conclusion I’ve come to is that what is best for Joshua is what is worst for me ~ giving him the opportunity to die peacefully in his sleep.? If he stops breathing while he’s asleep, his oxygen level will fall until he has too little oxygen & too much carbon dioxide in his system, which will lead to unconsciousness & a painless death without struggling or fear.? If my child has to die, having it be painless is my top desire, and really, going to sleep peacefully in my arms & waking up to see Jesus in heaven is probably the best way ?that Joshua could go.? So, if he stops breathing while he’s asleep, I’m not going to fight it.? Trying to keep him here isn’t for his benefit; it’s for me.? It’s because I can’t bear the thought of not having him here with me & ultimately, that’s selfish.? ??Yes, I believe that God numbers the days of our lives before one of them comes to be, so I guess it could be argued that my decision isn’t necessary ~ Joshua will die on the day & time that God has already appointed regardless of whether? I intervene or not.? That’s true, which is why Joshua didn’t die in January or in April or in August when, judging by the circumstances, he very easily could have.? But by choosing to not intervene in the event of an apneic episode, I’m freeing myself from getting into the situation where I am having to remind Joshua to breathe & feeling like I can’t let him stop no matter how tired he gets.? Instead of Joshua struggling for hours & ultimately dying, anyway, if it is “his day to go,” I can let him simply stop breathing in his sleep & die peacefully without any pain or fear.? No matter how difficult it is for me, I have to be willing to let him go in a manner that is as easy as possible for him. So, standing at the crossroads, I made my decision.I’ve decided that we aren’t going to intervene again.Now, at night, I set Joshua’s parameters on his pulse ox to alarm at 50% oxygen or a heart rate of 30.? If that alarm goes off, it will be only to serve as an alert that Joshua is dying.? I was awake & aware when he came into this world & I want to be awake & aware when he goes out.? I don’t want to wake up to my son lying dead in bed next to me.? I want to be holding him & loving on him when he dies.? I want to know what time he dies & what the circumstances are. ?But I know myself… I will never be able to NOT push Joshua to breathe.? I can’t NOT do it if I’m aware that he’s starting to have a major apneic episode… everything in me wants to push him to fight, to survive, to stay here with his family who loves him.? But pushing him to stay only brings increasing pain for him.? It’s not the loving thing for me to do.? And when it is his day to die, I want him to go peacefully, not struggling or feeling scared.? So… the next time his brain stem stops working,? if it doesn’t start up again before Joshua’s oxygen level reaches 50%,, the pulse ox will alarm to let me know that it’s time.? If Joshua’s oxygen drops low enough to trigger the alarm, he will already be unconscious ~ not merely asleep ~ and he will not be feeling any pain.? There will be no need to try to shake him awake & beg him to breathe.? Instead, I will be able to turn off the alarm, gather him in my arms & hold him, talk to him, kiss him & be with him as he dies.? If he has to die, that scenario is much more preferable to me than the alternative.? Please understand that this was an excruciatingly-difficult decision for me to come to.? It was not made lightly, nor is it open to debate.? I would wager that any parent who has been faced with a similar situation pertaining to their dying child will understand.? If you don’t…. if you think this is seven shades of wrong & you cannot fathom how I could even consider not fighting to keep my child breathing, then I would wager you have never watched your child leave you bit by bit. Understand that you are fortunate & take a moment to tell God ‘thank you’ for sparing you from walking this road, yourself.? Then give me the benefit of the doubt that I’m making the best decisions I can for my son.? After all, I have been fighting for him for 5.5 years; it’s not like I would give up at the very end unless I was convinced beyond any shadow of a doubt that there was no better choice.? Sign My Guestbook | Read Tributes Written October 5, 2011 8:22pm by Kate Parker Joshua is okay for the most part.? He is still having severe headaches occasionally despite our having increased his fentanyl & I'm not sure what that's about, but we're able to make him comfortable with lortab & dilaudid, so that's a relief.DISCLAIMER:? I am not upset with any PERSON right now.? I am upset with the situation & the chaos that is resulting from it.Bethany, his younger sister (she'll be 4 next month) who is medically fragile, as well, got the same cold as Joshua.? Because she is immune-compromised, the piddly cold virus stressed her system tremendously, which then allowed an opportunistic bacteria to invade her kidney & result in an infection.? The bacteria is one that is highly resistant to most antibiotics, which means oral meds can't kill it.? As such, Bethany will need 2 weeks of IV antibiotics in the hospital.? We're going to try to get a PICC line for her or even an IJ central line so that we can keep her at home & do her IV meds with home health care rather than having her hospitalized for half a month.? She'll be admitted tomorrow morning.Why am I mentioning this on Joshua's CB page (I also updated on Bethany's page ~ )?? Because I want people to know about this.? I want the people who thought I was a raging witch for being upset about Joshua getting exposed to an illness to REALLY understand why I was.? "It was just a cold."? Yeah.? And as a result of that piddly virus, my son's body took a hit from which he has not yet (and may never) recover, and my daughter will spend 2 weeks either in the hospital or at home with a central line & we'll pray that she doesn't get more ill from secondary infections.? The stress on my family right now is already enormous & adding a hospitalization to the mix (she'll be inpatient for at least 4 days, even if we manage to successfully place a central line) ramps it up even more.? I will be trying to divide my time between taking care of Joshua at home & visiting Bethany at the hospital (her oldest sister will stay with her) at times when my oldest son isn't at his college classes so that he can take care of Joshua & watch the other children while I'm at the hospital while also continuing to pack up our home in preparation of our move at the end of next week.? Crazy.? We would have been challenged with just the move while Joshua was sort of stable.? We didn't need to have an illness & a hospitalization tossed into the mix as a result of "just a cold".And, once again, I want to reiterate that I am not blaming N's mother, N's father, Megan or Adam for the unfortunate events that have occurred.? N's parents are good friends of ours & I know that their actions (plus those of Megan & Adam) were not malicious or intending to cause harm.? I am just REALLY, REALLY, REALLY stressed-out right now and need a place to vent about it (again) so that I don't lose my mind.Sign My Guestbook | Read Tributes Written October 4, 2011 12:46am by Kate Parker Joshua's still sick with a snotty, runny nose that keeps him sniffling all day & interferes with his sleep at night.? His pain has gotten bad again.? He thrashes around when he's sleeping & ultimately wakes up, crying that his head & knee hurt very badly.? I get him meds & rub his leg while we wait for the pain to abate enough that he can fall back to sleep.? He's also needing regular doses of lortab & dilaudid to get through the day, so I called the ped today to ask if we could increase his fentanyl patch.? It takes 12 hours for the higher dose to become fully effective, but I'm hopeful that Wednesday will be a better day for him.? I don't anticipate tomorrow being anything more than a day that he sleeps away, as that is the usual pattern after we increase his fentanyl dose.? I generally have to cath him a few times, too, since his bladder takes a break from functioning with each dose increase (a not-unusual side effect). His stuttering is back in full force, which is disappointing, but fine.? I mean, I don't like it, but what can ya do?? His articulation has gotten worse, too, which leaves me wondering just how bad it will ultimately get.? I pray it never reaches the point that I can't understand anything he says.? Yes, he has an iPad with communication software loaded on it & he's great at using it, but that's not the same as hearing his voice.? At this point, he is about 50% intelligible to our family & about 10% intelligible to non-family members.His energy level has decreased, but I am hoping that once he's fully recovered from his cold, he'll perk up again.? He's still happy when he's not hurting.? He has recently begun understanding jokes & will laugh at things that strike him as funny. It's heartwrenching to watch his personality grow while his body shrinks. One of my kids said that Joshie's spirit is getting too big for his body & I think that's a really good description. He's also begun expressing sadness at being physically unable to do things he used to be able to do.? He doesn't want to see pictures or video from days gone by anymore.? He doesn't want to watch his siblings doing things he's unable to participate in, such as riding bikes outside.? He'll cover his ears & say, "No!" if a conversation about the activities the kids are looking forward to doing once we move gets started in his presence.? What can I say about that except it's another twist of the knife permanently embedded in my heart.? I had been SO thankful that Joshua seemed mostly-oblivious about his decline & I had hoped it would stay that way.? Apparently it isn't to be.? I'll stop now because I don't want to go on & sound bitter when that isn't how I am feeling.? I'm disappointed.? Intensely.? I'm tired in every way ~ body, mind & spirit. Living in limbo is exhausting, but the alternative is so much worse.? I feel isolated from the world now with the exception of the contact I can make through the computer.? This life is similar to other families online who are living with dying children, but it's not the norm for most people.? I understand that, but understanding doesn't make anything easier anymore.Written September 29, 2011 5:15pm by Kate Parker The fallout from my last journal entry is insane.? I've read & re-read what I wrote and what I see is me venting about my kid getting sick from a stupid mistake.? That's it!? People vent on Facebook or their personal blogs about their kids getting sick & they don't get flamed for it, so what's the deal here?? That's a rhetorical question, by the way. I don't need or want it answered.? Bottom line is that this is my journal, a place where I can write what's going on with Joshua & how I feel about it, and in being open & honest about my feelings, I may occasionally step on some toes since people naturally bring their own emotions & experiences to a situation & sometimes I may say things that poke a nerve for them.? I understand that; however, this is not the forum for a spirited debate.? This is a journal chronicling the events of a sick child, not a family blog where anything posted is open for criticism.? I share what is happening with Joshua and my feelings about those happenings.? I'm not open to debating the validity of my feelings, which is why I have a few friends who keep an eye on the guestbook comments and delete those that strike them as being offensive, hurtful, rude or mean-spirited.For years, I kept my postings here straightforward & matter-of-fact.? I would detail what was going on, but I did not include how I felt about it.? I did not open up publicly because I don't have a thick skin & I didn't want to be criticized.? A few months ago, I got to the point where I didn't have the energy to continue writing two posts ~ a matter-of-fact public one that I'd post here & a real, "this is how I'm dealing" one that I'd post on my private family blog ~ so I prayed about it and decided to put most of it here. You see, the reason I have this caringbridge page is not primarily to keep friends and/or family updated about Joshua ~ Facebook, email & phone calls are just as effective at accomplishing that goal & Facebook, especially, is quicker.? The reason I have this journal is so that I have all of Joshua's medical "stuff" in one place.? When I need to remember something, I can look here rather than trying to sift through hundreds of posts on my private blog or on Facebook.? I didn't think I needed to really get into how I was feeling about things since I knew that wouldn't be the information I was looking for when I scanned back through old posts.? But then I was told that there was nothing more that could be done for Joshua & he was going to die.? Suddenly, this journal became more important to me because it's the record of what Joshua went through.? Suddenly, it made sense to me to begin writing down my emotions & thoughts here as I made my way down this new path versus only on my private blog. I still worried that I'd get flamed for saying the wrong thing or for saying something in a way that would upset others & I expressed that concern to my friends.? They assured me that people wouldn't do that... that people understood on a blog like this one that a mother is going to be emotional & that I was allowed to write whatever I needed to write.? I knew differently because I'd followed several blogs of chronically-ill kids & I'd seen those mothers get skewered at times after writing out their feelings about some event (oftentimes a stupid mistake that resulted in their child suffering), so I took a tip from one of those mothers & asked a few trusted friends if they'd keep an eye on the comments for me.? Thankfully, God has surrounded me with an "inner circle" of friends who love me & want to protect me as much as possible from negativity that might arise as a result of a journal entry, and that has given me the security I need to write freely, which has, in turn, helped me to process my emotions & make decisions & keep functioning.I thank God that I was encouraged to open up publicly about my feelings as they pertain to Joshua & his condition because I have? been incredibly blessed in doing so. I have been so grateful to have the support of so many people as things with Joshua have roller-coastered up & down these past few months.? The uplifting comments & prayers have helped SO MUCH ~~ I think, for me, it's just knowing that even though people may not understand exactly what I'm going through, they DO care, & I'm not alone as I walk this road, & that makes the difference.? I sincerely appreciate all of you who unconditionally extend me grace during this season of my life & validate my emotions even when you may not understand them from personal experience.? Thank you to everyone who understands that a vent is just a vent... it's just me letting off steam in the confines of a safe environment where I can do that.? I am grateful for the cocoon of caring support that I have been enveloped in as so many of you have taken time to write words of encouragement to me.? Thank you for that!SO......... moving on...........Joshua has gotten increasingly congested over the past couple of days.? He's had to work more at breathing, which tires him out, so he's sleeping more, but since sleep is restorative when you're sick, I'm hoping that will translate into Joshua getting over this bug soon.? Interestingly, his speech has taken a major nose-dive in conjunction with him getting sick.? He's stuttering again & understanding what he's saying has gotten very difficult. I'm very tired.? In addition to Joshua being sick, 6 of my other kids are affected, so there's a lot of sniffling, headache-y, not-feeling-good little people in my house, which increases the need of everyone for their Mom. Unfortunately, Bethany has also been hit hard by this virus and is showing signs that she is entering a flare (she has systemic Juvenile Rheumatoid Arthritis), which concerns me because if her arthritis flares, she gets put on high-dose steroids to suppress the flare and then we spend a few months slowly weaning her off of the steroids while praying her disease stays suppressed.? Bethany is in need of open-heart surgery & her cardiologist requires her to be off of steroids for at least 2 months prior to surgery to prevent dangerous complications.? If this cold virus triggers an arthritis flare that requires steroids to bring under control, it will set back Bethany's heart surgery by a minimum of 4 months, which creates more concern since her heart condition will continue to worsen until she has the surgery to repair it (she was born with a complete AV canal, had 2 surgeries in Ukraine, & now needs another one to further repair her heart & hopefully reverse the moderate pulmonary hypertension she has).When Joshua's awake, he's been in a fairly good mood for the most part.? He's like any kid who doesn't feel good ~ more whiny, more cranky & more needy, but he's also more cuddly & lovey, which is sweet.? It's a challenge balancing his needs with the needs of everyone else in the family on a good day, and now it's even moreso. We've been blessed with the gift of really good vitamins (Shaklee) from a friend, so everyone is taking extra supplements & hopefully we'll all feel better soon.To add to the craziness, we're moving in two weeks.? We rent, and when a 6-bedroom, 3-bath house that is just minutes from Charley's work was listed, we prayed about moving & felt the answer was, "Yes." Joshua was as okay as he was going to get & we knew that with a month's time, we could get it done.? In the next couple of weeks, in addition to nursing kids back to health, I've got rooms to paint at the new house & packing to finish, so updates here will probably be scarce unless something important happens with Joshua, in which case I will make sure to let everyone know.Sign My Guestbook | Read Tributes Written September 28, 2011 12:17am by Kate Parker Joshua is sick.? Last week, Megan & Adam went out with some of their friends from church & those people brought their toddler who had a cold along.? Adam spent hours playing with the little boy (he always does) & when he walked in the door that evening, both he & Megan immediately came over and hugged their baby brother.Had I known that N (the church couple's son) was sick, I would have told Megan & Adam not to go out that night.? Had they come in the door & mentioned that N had a cold, I would have instructed them to go take showers & change their clothes before touching Joshua.? As things happened, though, I didn't know N was sick until the next day when I was reading Megan's Facebook wall & saw a message from N's mom telling Megs & Adam to safeguard their siblings because N was a lot more sick & they now thought he had croup.? Lovely.After reading N's mom's update, I called Megan & Adam together and asked WHY they spent the evening playing with a sick child & then came in the door & immediately began hugging & kissing their baby brother ~ does the fact that he's terminally ill & extremely medically fragile not mean anything? Megan & Adam both said they hadn't even thought about it.? They felt horrible, which was not my intention, but I don't regret being completely blunt with them.? The cold, hard fact is that they DO need to think about these things.? Maybe that's not fair, but it's reality.? My next thought was how could N's parents THINK to invite Megan & Adam out when they knew their child was sick and they know about Joshua? Especially since N's mom is a nurse! It's not like she's unaware of germ transmission and what a piddly cold could do to a child in Joshua's condition! I'm angry because, sure enough, Joshua is now sick. Adam has a cold, too, so I am fairly certain it's whatever bug N had. Joshua's good streak appears to have ended, though I am hoping that once he's over this bug, he'll rebound again & we'll still have more of the "good streak" we've been experiencing.? I am so frustrated that he got sick from something that could have been avoided. I'm unhappy that N's mom didn't think about the risk involved in exposing Megan & Adam to her kid's virus while knowing that they'd be going home to both Joshua and Bethany, who is still immune-suppressed due to the chemo medication she receives to control her autoimmune disease, and the rest of the kids. And writing on Facebook to 'safeguard the siblings'? What does THAT mean? It's a little late after they came walking in the door with the bug! Wouldn't it have been better to say, "Gee, my kid is sick... guess we should stay home tonight," or "Gee, my kid is sick... let's not invite Megan & Adam to come since it would be really bad for Joshua to get the same bug that N has." ???? Yeah, I realize that kids get sick & that's just life, but when you have a child who could die from getting a common cold, it becomes really flipping important to protect him from everything if at all possible. To have friends from church not think about it at all and then to have my young adults not think about it at all REALLY upsets me. It makes me angry knowing we could lose Joshua because of something that should have been prevented completely, and even if he weathers this illness all right, he's still losing days of feeling good. Think of it this way ~ if you knew your child had 30 days to live, how upset would you be if 5 of those days were spent battling a cold virus that could have easily been prevented? I'm not saying Joshua has just 30 days to live (I pray it's a lot more than that), but I'm trying to make a point. He's already dying.? He didn't need an illness to make the good days even fewer.Sign My Guestbook | Read Tributes Written September 23, 2011 9:16pm by Kate Parker Joshua saw Dr. S today & after doing a complete exam, including vision & hearing screenings, declared that she has no explanation for why he's doing so well.? She was amazed & said repeatedly that there was nothing that she could think of that would give a reason for why we're seeing improvement in Joshua, but she was delighted with how happy & playful he was both Wednesday & today.? She said that there is obviously a higher authority at work here & we should not argue with authority!? LOL? I laughed & agreed with her that nope, we're not asking questions, just being thankful for what we're seeing & enjoying it while we've got it.? At the end of the appointment, Dr. S said that seeing Joshua was the best way she could have imagined ending her workday & her week & she thinks he's the best he's been, ever, in 2011 (I agree with her assessment).? Both she & I could not stop smiling for the entire hour.? It was stupendous!!!On the way home, Megan called to ask if I'd pick up a few things at the store, so Adam, Joshua & I went to Wal*Mart.? Joshie did great while we were there (about 30 minutes total) ~ he didn't get overstimulated or exhausted!? When we got home, he was jazzed to play a Wii game with David & Isaac and that's where he is right now.? The laughter coming from his room is beautiful to hear.To have Joshua able & willing to leave the house & not have it wipe him out for an entire day afterward is so fantastic I can't put it into words.? Yes, he was breathing heavier & louder by the time we got home, but he was still HAPPY & not hurting, so I count the outing as an complete success.? :)? It is so NICE to be able to let down my guard a little because I'm not so worried about my child.? No, I'm not abandoning all medical protocols that we have in place ~ I'm not stupid (or maybe it's that I lack the faith to do it) ~ but I don't feel as though Joshua could die any day now, which brings a relief to my soul that is so immense it makes me giddy.? Dr. S was thrilled, but also a little cautious because, as she told me, this won't last... it can't.? And, barring a complete miracle healing, I know she's absolutely correct.? I haven't forgotten the reality of Joshua's situation, but I refuse to allow that "waiting for the other shoe to drop" emotion to take over here.? Instead, I'm completely embracing the happiness that is the gift God has given my family & me at this point in our journey with Joshua... the oasis in this desert... the unexpected shade in the midst of the valley... it's doubly beautiful & triply appreciated because no one saw it coming.? God's pretty awesome that way! ? Written September 22, 2011 11:22pm by Kate Parker It's been a really interesting week.? So interesting, in fact, that I've had no idea what to update here, which is why I've said nothing.? Truth be told, I'm still not certain what to write, but I figure I'll share what's up & let you draw your own conclusion.Joshua has been showing improvements in a myriad of areas.? He is not having any apnea, bradycardia, or tachycardia.? He's not having difficulty breathing.? He has chosen, of his own volition, to get out of bed multiple times this past week.? Sometimes he has walked to his old room or to the living room.? Sometimes he crawls to where he wants to go.? A couple of times, he has stayed in his room, playing Legos on the floor with his brothers.? Yesterday, he asked to go out of the house.? Granted, what he asked for was to go to the doctor's & to get an x-ray of his knee that has been hurting him (the knee of a leg that hasn't felt pain for the past 4 years), but the fact that he wanted to leave the house for ANY reason is huge.? He hasn't asked to leave the house in so long I can't remember when the last time was.? When I took him to the doctor's (a 45 minute car trip), he did GREAT!? He was happy, laughing & having fun the entire time.? He joked around with his beloved Dr. S & her nurse & gave big hugs.? After the appointment with Dr. S, we went to the hospital for x-rays & then headed out to grab a bite to eat because Joshua wanted breadsticks, and then we drove home, where his good mood & energy continued for the rest of the day.His color has improved.? While he is still pale, the gray color that had become part of his norm has disappeared.? He's not stuttering anymore. His energy has improved.? He has been sleeping only 10-12 hours each night (down from 18+ per day).? He isn't getting sweaty just from sitting up in bed anymore, nor has he gotten sweaty when he moves around the house.Every 3 days, coinciding with the day we change his fentanyl patches, he is complaining of severe knee pain.? The x-rays taken yesterday did not show any acute fracture, though.? I know you may be wondering how knee pain counts as an improvement... well, Joshua has nerve damage in his right leg that is severe enough that he hasn't been able to feel pain in his knee for years, so to have him suddenly feeling sensation that has been absent leaves me wondering if perhaps those nerves are being repaired.? Crazy?? Maybe.? But if there's a logical explanation for it, I don't know what it is. He's tolerating his feeds without problem and he's eating & drinking well every day.? He's gone from us having to push & cajole to get 8 ounces of fluid into him each day to his requesting & downing 24+ ounces each day in addition to eating multiple times each day & getting 32 ounces of formula via g-tube.? He's gained weight & is back up to 45 pounds.I don't know exactly what these improvements mean.? I do know that almost 2 weeks ago, God told me to read a passage in Isaiah one very late night & that led me to ask, "Are you saying you're going to heal Joshua?"? I didn't feel a definitive answer was given to me, but the next day, one of my friends called me & shared that she'd been talking to God at 3am (same time I'd been reading my Bible) & she'd gotten a word from the Lord that pertained to Joshua being healed of part of his problems.? Neither my friend nor I felt confident enough to boldly proclaim, "I know that I know that I know that God is going to heal Joshua," but both of us had a hesitant feeling of, "Hmm... maybe that's what He's going to do, but darn if we want to say anything in case we're wrong!? Guess we'll wait & see!"? And what we've seen is Joshua doing better than he has in a very long time.? His pediatrician & nurse were impressed when they saw him yesterday & I am looking forward to taking Joshua to another appointment tomorrow simply because I really want to test how he'll do on another outing so soon after the last one.I don't know why ~ for what purpose ~ God has allowed Joshua to show some improvements.? I don't know if He intends to heal Joshua partly, completely, or if this "good period" is simply a time of blessing for my family to enjoy with Joshua before things get bad again.? All I know is that I absolutely give credit for the improvements to the Lord.? I have no other explanation for why my terminally-ill son who has been steadily inching closer to death suddenly switched directions & is getting better in so many ways.? No, Joshua is not running around, riding a bike, speaking clearly & being "normal."? But he's also not having bouts where he stops breathing or where his heart either slows dramatically or races dangerously fast.? He's not requiring medication for breakthrough head pain every single day.? He's not sleeping the days away.? He's not insisting on being in his room, on his bed, every waking moment.? When asked, he says he is not going to see Jesus for a long time.? He says he'll tell me when it's time to go, but he insists it isn't going to be for a long, long time.? When I asked him last week (after my conversation with my friend), "Joshua, is God healing you?" he asked, "What do you mean?"? I clarified, asking, "Is God making you all better?"? Joshie got a thoughtful look on his face & was quiet for a full minute before answering, "I'm not sure... maybe."? When I asked him that question just a moment ago, he stood up on the couch (we're in the living room right now, not his bedroom) & pumped his arms excitedly while exclaiming, "Yes, yes, yep!"? Emily asked, "Are you sure?" and he shouted, "Yes!"? Do I believe him?? Yeah, actually, I do.? I'm seeing evidence that makes it easy to do so.Do I think that it is possible God may heal Joshua completely?? Yes.? I do.? I always have.? Do I think it is possible that God may heal a portion of Joshua's conditions to allow him a longer life, but not as long as it would be if he were healed completely?? Yes, I do.? I have seen it happen with other people I know.? Do I believe it is possible that God may be blessing us with a period of time where Joshua is "better" before He takes Joshua Home for his complete healing?? Yep, I believe that's a possible scenario, too.? Like I said, I don't know what the improvements we're seeing indicate.? I don't know if this is going to last or for how long.? I don't know if Joshua is going to continue to get better & better or if he's going to stabilize at some point & stay there or if he's going to start tanking again.? Historically, any time I post on Caringbridge saying that Joshua is doing really well, he tanks soon thereafter, so will I be surprised if I post this update & then have to come post that Joshua suddenly took a turn downward & is doing poorly again?? No, not really, though I pray that doesn't happen.? The only thing I am certain of is that everything God does is for His glory, so what we're seeing with Joshua is happening for a reason.? And just as I didn't waste time asking Him "why" with regards to the bad stuff, I'm not asking "why" for the good stuff.? I'm just enjoying it, and thanking God for it, and hoping it continues.I am well aware that if Joshua tanks tomorrow or next week or next month, I will have people who scoff when they remember this post because they will think I made a mistake by placing my faith in God or that I was silly to believe my child was getting better in any way. If that happens, I won't think I made a mistake. I will know that God's plan is different from what I thought it might be & I will be doubly grateful for this "good period" that He has given us with Joshua.? Ultimately, I want everyone following Joshua's story to know that he IS doing better in many ways right now because so often, the news I have to share is not so positive, so it feels fantastic to be able to write happy things.? I want people who are praying for Joshua to be encouraged that the Lord is hearing their requests & is answering.? I want people to know what God is doing for my little boy & to celebrate & praise Him with me.? God is giving us time with Joshua to do many things that we had thought were long gone... things I have been grieving the loss of.? I had been told numerous times by hospice & Joshua's doctors that the progression of decline was to be expected... it was sad, but we knew it was going to happen...? Joshua has been on a path that is typically one-way, which is why we have a signed DNR order for him & have made all preparations for his death (his cremation is paid for, I bought an urn that is sitting on a shelf in Charley & my bedroom and plans for the memorial service are done).? To see Joshua make a U-turn & actually regain lost ground is mind-blowing.? Will it last?? I don't know; time will tell.? Regardless of what happens after I click "post," though, I will always thank God for this gift He's given me of time to do things with Joshua that I thought would never happen again.? Sign My Guestbook | Read Tributes Written September 15, 2011 3:46am by Kate Parker Today is Adam's 19th, David's 10th & Sarah's 10th birthday.? Thank you, God, that Joshua did not die just before or on this day.? I desperately do not want his death to be right before, on, or right after any of the other kids' birthdays.? I don't want their special days to be marred by the memory of their brother dying.? Oh, I know I may not get what I want, but God knows it's something that I feel strongly about, so who knows... maybe He'll grant that wish.? Since we have birthdays today, October 15th, November 3rd, November 13th & December 2nd, followed by Christmas, it would be great if Joshua doesn't die before 2012 comes along.? I'm not getting my hopes up, but the Bible says to make our requests known to God, so while I always ask that He spare Joshua's life & allow him to grow up in our family rather than in heaven, I follow it up with the request that if Joshua has to die, to please not take him on one of his siblings' birthdays.? I really don't think that's too much to ask, but of course, I'm not God.He's doing all right.? He's begun stuttering & his balance & strength when walking is not good, and when he talks, it's getting increasingly difficult to understand what he's saying.? He audibly sucks in deep breaths at random times during the day, which I was told is probably him re-regulating his oxygen levels.? He sweats profusely with any kind of exertion ~ it can be something as mild as playing a video game while sitting up for an extended period of time ~ as he has to work harder to maintain his oxygen level.? His heart is obviously working harder, as well, but at this time, his little body is compensating still & I suspect he is as stable as he is going to get.? He's had headaches more frequently in the past few days, but Lortab & Dilaudid are still controlling them, which is a relief.? When those meds aren't effective, we'll increase his fentanyl patch dose again.We're pretty certain that he has another stress fracture in his right hip, but aside from him constantly messing with his diaper because it's "bugging him", he doesn't complain about it much.? If he weren't getting massive amounts of pain medication every hour, it'd probably be a different story.It's really easy to get crushingly sad these days ~ all I have to do is allow myself to look at videos from a few weeks/months/years ago & see where Joshua was "back then" compared to where he is now.? A friend advised me to stop doing that.? She said I'm going to tear myself apart.? I think she's probably right, so I'm going to take her advice.? After Joshua is gone, I can watch the videos we have of him.? Until then, it's not going to help one iota, so I need to resist the temptation.? It's not that I want to be sad (if I did, I don't have to watch videos to accomplish that).? I think sometimes I just want the validation that what I think I'm seeing is what's really happening.? It's very difficult to watch Joshua leaving bit by bit.? Yes, I'm thankful he is still here with me to hold & to talk to, but that doesn't ease the sting of seeing him lose skills & strength & other aspects of his personality.? Every day is a gift, most definitely, but every day brings him closer to his last, and sometimes that reality is tough to face.Sign My Guestbook | Read Tributes Written September 11, 2011 5:16pm by Kate Parker I haven't written anything because there hasn't been a lot to say.? Joshua has been stable ~ good, even ~ as far as having no apnea & no bradycardia or tachycardia.? He's had some vomiting here & there, not always with a reason we can discern, and he's sleeping a lot.? Other than that, he's been happy each day.? We're in a twilight place right now, with him not getting substantially worse, but not getting better, either.? I know, I know, he's not expected to get better, but the God I believe in is fully capable of healing Joshua if that's what He wants to do, and I refuse to stop praying & hoping for that outcome.? I won't stop asking God to heal Joshua until the day He does.? It'll either be healing in heaven or healing on earth, but one way or another, my son will get healed.? The other kids & I are hanging in.? We've gotten used to the way things are, which means everything will probably change pretty soon (isn't that how it always goes).? I was given the signed DNR form this week & even though it came as no surprise (I had to sign it along with the pediatrician), it still stung.? I don't think any parent wants to read their child's name on such a document.? It ranked right up there with seeing "Joshua Gabriel Parker" on the top of the document ordering his cremation.? Very, very painful.? Thankfully, every day is not filled with such experiences, but the ones that are are unpleasant. Anyhow, like I said, I don't have much to share.? I guess that's a good thing, though.? I'm tired & dealing with other stresses along with Joshua's challenges, which makes it difficult to do much more than put one foot in front of the other & get through each day.? I am thankful for my children who love me, my friends who encourage me, & my Lord Jesus Christ who walks every step with me so that I'm never alone.? I can do all things through Christ, who strengthens me (Philippians 4:13)... that is pretty much my go-to mantra these days as I scan the horizon to hopefully get a glimpse of when this valley might end. Written September 7, 2011 8:47pm by Kate Parker Joshua & me, taken a couple of hours ago.? I was cuddling him as he slept when he kicked one leg over mine & reached his arm up to wrap around my neck.? Talk about melting a mama's heart!? I'm here tonight not because there's anything ultra-important to say, but because it's something to do while I wait to see if Joshua is going to gain consciousness sometime today.? It's a few minutes before 7pm, so if he does awaken, I suspect I might be up all night because he won't be ready to go to bed at a decent hour.? I'm okay with that.? I just want him to wake up.? I don't like it when he sleeps all day long.? It gives me the unwanted opportunity to experience time devoid of his presence.? I was in the living room with everyone except Joshua after dinner.? They were watching a movie & laughing at the antics of SpongeBob & Patrick.? As entertaining as being with them was, I had that niggling, "something is missing" feeling that prevented me from fully engaging in the moment.? Despite there being a room full of children to keep me occupied, my heart was aware that one little person was not there and, taking notice of that fact, I left the group to go sit with my sleeping boy simply because I could.... because he is still here where I can hold his hand, stroke his cheek, kiss the top of his head, smooth his hair & hold him close.? I thank God that I still can.After multiple discussions with our pediatrician, we've decided to withdraw Joshua from hospice. NOT because anyone believes he's getting better, but because we have come to recognize that while hospice can be wonderful for older people or children whose conditions are somewhat predictable (meaning that there is some understanding of how things will progress), Joshua does not fit into that group.? It is anticipated that he will need medical care up to the moment he dies & the hospice company we were working with was not going to be able to provide that level of care.? They made it clear to both myself & Joshua's doctor that if he were to progress to where the pediatrician & I think he might, he would need to be admitted to the hospital.? As such, we really could not think of a reason to keep working with hospice.? At this point, they've become a middleman & I have never liked having one of those.? Dr. S, her nurse & I have an excellent relationship & I don't need to ask a hospice employee to get a prescription for me when I am fully capable of doing it myself.? I also don't want to hear secondhand what Joshua's doctor had to say when I can speak with her directly. Things that were supposed to be made easier because Joshua was on hospice did not turn out that way and the end result is that Dr. S & I agreed we could take care of Joshua by ourselves.? After he dies, I can get the other kids grief counseling through another organization in town that is not hospice-run, so they won't suffer for our decision, either.? Please know that I am not 'dissing' on hospice.? If you have used a hospice program & been thrilled with it, that's great. I can see where hospice would work really well in different circumstances; however, it was not a good fit for Joshua's needs, but it wasn't until we tried it that Dr. S & I came to that conclusion. We're figuring this out as we go since there is no road map that we can consult to help guide us on the way.? Some decisions regarding Joshua's care are fairly clear-cut & easy to make; others are more challenging, & sometimes we have to experiment to determine if it's going to work out.? Unfortunately, hospice did not.? Fortunately, this experience allowed us the opportunity to establish a plan of action for the future & with that comes a measure of comfort in knowing that we've tried to cover all of our bases.? Of course, Joshua could throw us a curve ball (he seems to be fond of doing that), but if things go as we think they may, then when he is having more bad days than good ones, he'll be admitted to the hospital to live out his final days.? We've got further plans sketched out for once he's admitted, but I'll wait to share those until the time comes.? I don't want to focus on all of that right now.Update (yes, I took a break):As of 8:30pm, he hadn't woken up.? I finished another tube feeding & realized his bladder was completely distended since he hadn't peed all day but had gotten 4 feeds (8 ounces) during the day after having received almost 2 ounces per hour of fluid overnight.? I cathed him & filled up 1.5 diapers.? Joshua woke after I was done, but after 10 minutes of being awake, asked, "Can we please go to bed?"? He's asleep again, but it was really nice to have those minutes with him since he was cuddly & affectionate & hugged and kissed everyone & told us all goodnight, to have a good sleep & that he'd see us in the morning. It's my hope & prayer that he will wake up happy & ready to have a really good day after having slept over 24 hours (minus 15 minutes of being awake & interactive).Sign My Guestbook | Read Tributes Written September 4, 2011 11:18pm by Kate Parker I am feeling better.? A really long cry, a hot bath, long conversations with a few wonderful friends & getting a decent chunk of sleep restored my balance.? I think that sometimes I just need to let it all out so that I can keep going.? I'm thankful that God has surrounded me with the most caring, compassionate, loving friends any woman could ask for.? I am amazingly, overwhelmingly blessed to have friends who will walk with me through this valley.? I'm also thankful to have the support of the online community who comes here to read this caringbridge page & takes time to comment.? Thank you so much for your continued prayers & for commiserating with me.Joshua remains pretty stable, but we're seeing undeniable symptom progression & that is hard.? It is becoming more apparent that his brain stem is not as happy when he's sitting upright as when he lays down.? We see more tachycardia (heart rate greater than 200 at times), more breathlessness, more apnea when he's sitting up.? The tachycardia really wears him out.? He gets incredibly sweaty & then his temperature gauge (controlled by brain stem) shorts out & he vacillates between feeling hot & cold, which leaves him feeling miserable.? When he lays down, many of these symptoms disappear & the others lessen in intensity.? You'd think he would want to stay laying down, but he still tries to sit up most of the time.? His pain is controlled with his fentanyl patches & the occasional dose of lortab and/or dilaudid.? He's sleeping more (didn't wake until almost 6pm today), but when he's awake, he is happy.Despite the increasing symptoms, Joshua continues to smile, laugh, play with his siblings, tease, cuddle & find pleasure in the small things he can still do. Chocolate chip cookies are his latest "favorite," although chocolate ice cream is a close second.? Other foods he has been enjoying this past week include scrambled eggs with cheese, top ramen & french fries.? Pretty much nothing healthy, but we don't care.? Whatever he asks for, if we can say "yes" to it, we do. His attitude is positive almost exclusively & he serves as a reminder that we can praise God in all things... there is always a silver lining if we're willing to seek it... even when things look bleak or we feel horrible about a situation.? Lately, Adam & I have taken to asking Joshua, "Are we going to see Jesus tonight?" as part of our bedtime routine with him.? Joshua has moved from saying he is going to see Jesus soon to saying that he's not ever going to see Jesus because he wants to stay here forever.? I'd be okay with that, of course, but I trust that when the time comes, God will prepare Joshua's heart to leave peacefully.? I am fully confident that my little boy will be ready to go when God tells him it's time, and I am equally confident that the Lord will give me the strength I will need on that day to let Joshua go with Him.? I'm done trying to get that strength ahead of time; it's not going to happen.? God will grant it to me when I need it & not before (something I was reminded of the past few days).? I will admit I am relieved that Joshua has stopped telling us that he's going to leave soon, but I'm not sure that it's the truth.? I suspect that he's not telling us simply because he senses how difficult it is for us to hear it, and while he is doing all right (which is a relative term), he seems to understand that he's sick & getting sicker.? That may sound too advanced for a child who is cognitively about 3 years old, but it's what I believe is happening.? I can't say that I'm at peace with the idea of losing Joshua ~ what mother would be ~ but I have more peace now than I did a week ago.? Even though he is happy & not suffering, he is still existing more than living.? I am relieved that he is not feeling horrible pain at this time & I am thankful that he still finds enjoyment in his Wii games & his iPad, but what he is doing is not LIVING.? He is marking time until Jesus comes to take him Home.? More & more I am becoming certain of this.? The pasty complexion, the symptoms that speak of a dysfunctional brain stem that is deteriorating further, the increasing fatigue, the speech that is getting more difficult to understand... it all points to the same thing. Right now, he still has more good days than bad, so even though his world is reduced to one room, I'm content to pass the days this way.? When the time comes that Joshie is having more bad days than good, however, I think I am now more prepared to say 'see you soon' (I won't say goodbye).? No matter how painful it will be for me to be physically without my son (and I pretty much anticipate that it will be excruciating), I don't want to try & force him to stay, especially if doing so will cause him to suffer.? I thank God that as Joshua is declining, he is still able to be happy & interactive with our family.? I am so grateful for the days we are being given & for the memories we are making. I completely recognize this time as the precious gift that it is. I think I've just come to the understanding these past few days that this time won't last forever & I've decided I'm going to try to accept that fact & not fight against it instead of being sad & wasting time wishing for this situation to be different than what it is. Sign My Guestbook | Read Tributes Written September 2, 2011 11:28am by Kate Parker Joshua is officially 5.5 years old today.? I am inexplicably relieved that he made it to this milestone.? Don't ask me why because I don't have an explanation.I'm going to make chocolate cupcakes with chocolate frosting & sprinkles to celebrate.? I hope he'll eat one.Tomorrow marks the 18th anniversary of my father's death.? He died at age 52 of a heart attack, ironically sustained while he was out running during his lunch hour at work.? While the anniversary of his death does not leave me crying anymore, he's on my mind more prominently & I always feel sad that he did not get to meet 7 of my children before he died.? I guess he'll be meeting Joshua one of these days, though.? I also guess I should be comforted in knowing that, but I'd rather have them both here where I can see & hug them, instead.The emotional roller coaster continues.? Today is one of those days where reality sucks & what I want is to have someone hold me & reassure me that I'm going to get through all of this.? Not just things with Joshua, but everything else, too. Today is a day when I don't want to hear platitudes because they will sound hollow & meaningless even if they're said with complete sincerity. Don't tell me that God doesn't give me more than I can handle.? Yes, He does (intentionally, so I'll lean on Him).? Don't tell me you don't know how i do it because you know you couldn't.? I didn't choose this path & believe me, if I'd been given a choice, I would have said, "No thanks!"? Please don't tell me to run to the arms of Jesus, either, because right now, God feels very far away & I feel too sucky to run anywhere.? It's one of those days where I know I should make the effort, but I don't have the energy to do so. Today is a day when I want a friend to sit with me, hug me tight & let me let it all out, in whatever form it comes, & then agree that yeah, it bites & it's unfair & it shouldn't be this way.? I want to not have to deal with any of this today.? I'll go back to being strong tomorrow, okay?? Right now, today, I'm not strong.? I'm broken & battered & weary & sad & I just don't want to have to walk this road anymore.1 person this Written August 31, 2011 8:46pm by Kate Parker Last night, I was going through video clips that I've got on my computer ~ 30 second to 3 minute snippets of life spanning the past 3 years.? I watched Joshua grow up before my eyes as I played video after video & what struck me at first was how very happy his life has been despite the never-ending ups & downs of his medical conditions.? He is a little boy who has never let pain or physical limitation hold him back.? He has shown an amazing ability to accept "new normals" without complaint.? He also possesses a resiliency that defies logic.? The predominant facial expression displayed by Joshua his entire life has been a smile so big it makes his eyes crinkle into little slits.? Watching the videos showed me just how prevalent that smile has always been & how much joy Joshua has taken in every single thing he has done.? It brought me a lot of comfort to realize that, overall, his life has been good.? The second thing to strike me while watching the videos is how much my perspective has changed in the past few months.? I watched a clip of Joshua walking that was taken a few days before one of his tethered cord surgeries & I was amazed at how WELL he could walk!? The thing is, I clearly remember how concerned I was at the time that video was taken by how his walking ability had declined.? Compared to now, though, Joshua's walking was incredible, even days before he had surgery to remove scar tissue from his back that was preventing him from walking properly.? I was struck by his coloring, too.? He has always been pale, but he used to have a healthy glow.? Now his face always has a greyish cast to it, even on days that are "good".? Mostly, though, I was struck by how adorable Joshua has always been.? He was so little, and so cute, and so sweet with his little baby voice.? His laugh has always been contagious.? He's always been so, so loved & cherished by our family.? How blessed we have been to have our Joshie-bear.? How fortunate we are to have him still.Today, our neighbor's cat is having kittens on our back porch.? All of the kids gathered around the box to watch & I was completely surprised when Emily came around the corner carrying Joshua wrapped in a blanket with a huge smile on his face.? He wanted to see a baby kitty get born, too!? He sat quietly in my lap, engrossed in watching the mama cat & the newborn baby kitten (she's since had two more & doesn't appear to be done yet).? After 20 minutes or so, Joshie said he was ready to go back to his room & on a whim, I asked, "Do you want me to get Adam to carry you or do you want to walk on your own?"? My jaw dropped when he answered, "I'll walk on my own."? So I stood him up & he grabbed my hand & together we walked back to his room (about 30 feet).? David ran ahead & excitedly announced to Adam, "Joshua's walking!"? Then Joshua crossed the threshold of his room & Adam reached out for him, so I let go of Joshie's hand & he walked, unaided, about 4 feet into his brother's arms.? We celebrated this momentous achievement (no sarcasm here ~ Joshua hasn't walked since August 6th) & as Adam hugged Joshua, he said, "I've missed your walking."? Joshua beamed in response, then cuddled into his brother's lap.How my perspective has changed!? Not so long ago, I would never have imagined that the day would come when I would be so completely thrilled to watch my 5.5 year old little boy walk 4 feet by himself that I would cheer & applaud. I never knew I would smile through tears on an almost-daily basis or that the joy of seeing Joshua doing something he hadn't done in awhile would be tinged with a sharp sadness, as well.? Simple things that I've always taken for granted, like breathing effectively, are so important now that my impression of a day can be determined by it ~ if Joshua maintains good oxygen saturations through the day, I count it a good day.? When he's happy, I'm happy.? When he struggles, I fight back fear & trepidation.? As Joshua's world has funneled into an ever-decreasing square footage, my emotional barometer has similarly narrowed.? It doesn't take much to make me wildly happy ~ Joshua eating dinner can do it for me.? Right now, I'm fairly ecstatic as he wanted to eat TWO pieces of pizza!? TWO, people!? I could shout from the rooftops that my son ate a typical dinner tonight!? How awesome is that?!?? Like I said ~ little things make me exceptionally happy. It also doesn't take as much to elicit deep sadness.? Watching videos from the past, while making me smile & laugh, also brought an ache to my heart as I realized just how far downhill Joshua has slid & I contrast how much he used to be able to do with how little he can do now.? It's gotten easy to not focus on how abnormal it is for a 5.5 year old boy to spend 99% of his time on his bed, playing video games or games on an iPad.? By keeping my attention on things like maintaining pain control & adequate hydration & monitoring O2 saturation & heart rate & gauging how he's doing based on those things, I can ignore the reality, which is that a day that now meets my definition of "great" would have horrified me just a few months ago.My life feels like it's on hold while I wait for the approaching train to hit me.? There is a part of me that has wished the train would get here and get it over with already, for criminy's sake, because the knowledge that it's coming & I can't stop it incites a roller coaster that is emotionally, mentally & physically draining.? I mentally slapped that part of me, though, & told it to shut up because when that train arrives, it's taking my son away from my physical presence & I am in absolutely no rush for that to happen.? I will happily draw meds & give tube feeds & change bedding & diapers & sit in one room in my house for the rest of my life if it means the train will derail & go to some other destination far away from Joshua.? I don't know where I would direct it to go, though, because this experience of watching my child die is not one I would wish on anyone.? 1 person this Sign My Guestbook | Read Tributes Written August 29, 2011 8:04pm by Kate Parker Yea!? I finally got the slide show done!? There are 100 pictures & about 1/3 of them are of Joshua opening his gifts. I tried to keep the number of pictures containing party guests who were not my family members out of the slide show since I did not have permission to post pictures of them online (outside of Anneliese's son, Raymon). My friend, Anneliese, made sure to get a picture of every gift Joshua opened so I could show everyone who sent him something how happy he was when he was unwrapping so many fun toys, movies & games.? Thank you, again, to every single person who sent Joshua a birthday gift and/or a birthday card.? There are now 190 cards adorning the walls of Joshua's room and it's truly a happy, peaceful place for our family.? Thank you for making his half-birthday party extra-special & for the constant reminders that he's loved & thought about every day.? It truly does bring comfort to this mama's heart.Link to slide show:¤t=07661fe8.pbwLink to pictures of Joshua's room:.? After watching the slide show in its entirety, I realize some of the captions got cut off.? If I get the time, I'll fix 'em & update the link.? For now, however, I figure it's good enough & you'll get the idea.? :)? Another P.S.? A comment left in the guestbook made me realize I forgot to mention that the tie dye t-shirts that the kids & I are wearing were made for us by our pediatrician's nurse, Karen, who is an angel walking amongst us.? She personalized the shirts in each person's favorite colors, which is why Megan's shirt is red & black and Joshua's shirt is orange, red & blue and David's is blue & green.? Adam received two shirts (his size t-shirt came in a 2-pack, so Karen made him both), so I wore one of his.? Since the party day, she's made Charley & me tie dye shirts, too, and I also have 2 onesies tie dyed in boy & girl colors (1 of each) for my future grandbabies to wear in honor of their Uncle Joshua.? 1 person this Sign My Guestbook | Read Tributes Written August 29, 2011 1:29am by Kate Parker Just popping in to say that Joshua is doing okay the past 2 days, which is a blessing I'm grateful to God for.I have been busy getting lesson plans written for the kids I'll be home schooling this year & trying to not let myself get emotionally bogged-down with sadness because I'm organizing curriculum for just 4 kids instead of the 5 that I should be teaching this year.? Joshua should have been starting kindergarten.? That he's not is one more twist of the knife that seems to be permanently embedded in my chest.I've also been dealing with an insurance mess.? Charley's employer switched from Regence Blue Cross to United Health Care, effective September 1st.? That wouldn't have bothered me aside from the hassle of having to inform every doctor, dentist, therapist, etc of the change.? Unfortunately, however, almost no one in southern Oregon contracts with UHC (no, I don't know why), and of all of our medical providers, only ONE will bill UHC (our orthotist, who makes the AFOs for Bethany, Hannah & Joshua).? Our pediatrician, occupational therapist, physical therapist, speech therapist, pedodontist, dentist, ophthalmologist, pharmacist, the nurse practitioner Charley, Megan, Adam & I see & our chiropractor?? NONE of them contracts with UHC, which means they won't bill the insurance company on our behalf.? See the dilemma?I called UHC & asked a representative if they would cover Joshua's pediatrician & hospice provider, at least, if they billed as "out of network".? Their response?? No, but they would be happy to help me find a new pediatrician & hospice program to transfer to.? WHAT?!?? Yeah, like I'm EVER going to switch pediatricians, especially for Joshua at this stage of the game?? Not happening.? No way.? If I have to pay cash outright, all of my kids will continue to see Dr. S.? I won't take them to anyone else.The next step was applying for an individual policy through Regence Blue Cross.? Yeah, it would cost us twice as much as we were paying for group insurance through Charley's work, but we could keep all of our medical providers & that's absolutely necessary.? I filled out a ginormous application, faxed it to the Underwriting Department, & got back the response that they will offer coverage to everyone except Charley, Megan & me.? Fantastic.? So then the question was, what do we do for insurance for the 3 of us?I looked into OMIP, the Oregon Medical Insurance Pool, which is a government-run program for people who have been denied private insurance.? It's underwritten by Regence, too, but unfortunately, the premium for Charley, Megan & me would be $1,400!? Ridiculous when added to the premium for the other kids.? That leaves us with using United Health Care, at least for now until we can figure out something else.? I'm hoping Charley can find a different job.? It would be great if he could work less than 60 hours a week, if he didn't have to work every holiday (including Christmas, Thanksgiving & Easter ~ his employer is open 24 hours a day, 365 days a year, and all managers work all holidays) & if he could get away from the horrid district manager who told him to "take care of your dying kid on your own time."? So hey, for all those who read this & pray, please ask God to open a door for Charley to find a different job, one that offers insurance that is widely-accepted in southern Oregon.? If they offered Regence Blue Cross, that'd be even better (well, it'd be convenient).?? I'll be honest; having this insurance mess was really stressing me at first, but then I remembered that God promises to provide for our needs, and I am wholly confident that He knows medical insurance is an absolute need for my family.? I am also certain that He did not help me assemble the incredibly-fantastic team of medical personnel that I have for my family just to force me to lose them all when Charley's employer decided they didn't want to spend the money for premiums at a GOOD insurance company.? So instead of freaking out, I am choosing to do what I can do & then wait & see what God works out.? I admit, I'm a little antsy because from my perspective, we need to have something figured out NOW, but ultimately, there's not a whole lot I can do.? I can't force Charley to find a different job, I can't force some other company to hire him, & I can't force Regence to approve my entire family (though I could appeal & I plan on doing so for Megan).? So...<shrug>... this is one of those situations where I say, "Okay, God... do Your thing!"? And then I wait for Him to answer & see what He does or leads me to do.? It'll get worked out somehow.If Joshie stays stable tomorrow, it's my intention to put together a slide show of pictures from his 5.5 year birthday party.? Assuming (always a bad idea, I know) that I can get it done, I'll post a link.? If Joshua has a "higher need day," then my goal will be postponed, but I'm really hoping I can get it done.? I dislike having projects hanging over my head & since I told you I'd be doing the slide show several weeks ago, I feel badly about not fulfilling my word.? Anyway, it's next on my agenda of 'things to do'.? I appreciate people being patient about it.Written August 26, 2011 2:22am by Kate Parker The past couple of days have been predominantly good ones.? Joshua has had apnea each evening beginning around 8pm & lasting for a couple of hours.? He responds to verbal prompts to keep breathing & blow-by oxygen helps get his O2 up when he does breathe, which prevents him from getting horrible headache pain from the oxygen deprivation.? He's also had bouts of tachycardia & bradycardia ~ sometimes one after the other.? What we have come to realize during the past 2 days is that when Joshua gets excited, his heart rate goes crazy.? Sometimes it goes super-fast & other times it slows waaay down (which we know is completely abnormal, but hey, since when has Joshua ever done things the normal way).? Also, when he gets excited or very focused on an activity, he forgets to breathe.? He also gets very sweaty & worn-out very quickly.? As a result, we are doing what we can to encourage chilled-out activities.? Yes, Joshie still laughs & gets silly, but not to the degree that he was doing last week.? We can't let him do it for long periods of time anymore.? And in true Joshua fashion, he's already adapted to the new limitation & is okay with it.? He knows that we're just trying to help him feel as good as possible.Yesterday, Adam & I took Joshua to see his therapists ~ occupational & speech, along with everyone else in the office ~ who adore him.? His speech therapist volunteered her lunch hour ('cuz she's awesome like that) to program an iPad that Joshua received from a grant to aid children needing augmentative communication devices.? Joshua uses a program called ProLoQuo2Go.? It speaks for him when he touches buttons.? He can tell us anything he wants when he gets too tired to talk or when his speech gets too unclear for us to understand.? It is *fantastic* and I'm so thankful that Chrissy (his SLP) introduced me to the program & taught Joshua months ago how to use the iPad to talk for him.? Since it's an iPad 2, there's a whole lot more his new toy can do & he is having a great time playing the games that were downloaded just for him.? :)During the outing, which lasted a total of 4 hours, Joshua was happy, although he was completely exhausted by the time we were heading home.? While we were at the therapy office, he got to play with his OT & SLP & that was my first realization that too much activity induces apnea.? I hadn't made the connection before, probably because Joshie doesn't have many times of wrestling around on the ground.? When we got home, Joshua immediately began playing on the Wii with his brothers & by 8pm, he was so utterly wiped out that he stopped breathing... repeatedly.? I wasn't sure the two things were connected ~ fatigue & apnea ~ but? it happened again today (he got tired & that seemed to trigger apnea), and it stopped once I got him to take a rest, so I'm assuming it's a pattern.? Regardless, we're taking some precautions by keeping Joshua as chilled-out as possible.? He just seems to do better when he's playing a bit more quietly.? He can still laugh & joke around & have fun... we just are quicker to encourage him to take a short break & calm down so that he can play longer overall. This morning was interesting.? Joshua was playing a game on the Wii (of course) with David.? Both boys were laying on Joshua's bed & they were very calm.? Out of the blue, Joshua's pulse ox began going off.? It was his heart rate, which was registering as over 200 beats per minute.? I felt his pulse to see if the number was just a glitch, but nope... it was accurate, as his heart was truly racing.? He's had multiple bouts of tachycardia today.? Yesterday was a mostly-bradycardiac day.? I guess his brain stem wants to keep us guessing!? He's also had random temperature changes ~ he can be sweating with red cheeks & suddenly announce that he's cold & wants a blanket.? Again, I know it's brain stem malfunctioning, so it's not anything I'm worrying about.? That, in & of itself, is so NOT me... it used to be that I noticed & felt concerned about every new symptom Joshua exhibited.? Now, however, though I notice new things, if they're things I can't do anything about, I kind of shrug & think, "Eh, okay. That's interesting."? It's not that I don't care what is happening with my little guy... it's that I can't fix it.? I can't treat it.? There's nothing that anyone can do, so why stress about it?? The only thing these brain stem symptoms are doing is showing everyone that yep, things are still going downhill, and that's no surprise. I received an email from a friend who lost one of her daughters after she'd had heart surgery just 15 months ago.? In fact, her little girl never left the hospital, though she was there for 31 days.? My friend wrote me a long letter, but the thing that jumped out at me & really comforted me was her saying, "I don’t want you to feel that YOU failed Joshua.? Joshua’s days on this earth will not be prolonged by anything you do, nor will they be cut short because of anything you didn’t do.? God is the only One who knows when Joshua will leave this earth; his days are already written in God’s book." I read & re-read that... letting it truly soak into my heart & mind.? It's exactly what I needed to hear even though I didn't realize I needed to hear it.? She was right; Joshua's last day on earth is already known by God.? As such, I don't need to stress myself thinking that if I don't do X, Y or Z properly, it's going to cut short my son's life.? I don't possess that kind of power.? Obviously, I need to use the wisdom God has given me to take care of Joshua to the best of my ability (and of course I *will*), but reading those words from my friend helped me to get things back into perspective by reminding me of Who is ultimately in control of all of this.? Give ya a hint... it ain't me!? (grin)? Knowing this truth & having it planted firmly into my heart again (not sure how it got uprooted in the first place, but I don't think I'll waste time analyzing that) has helped me to relax more.? My priority is enjoying Joshie... not stressing about the new & continuing symptoms that point to his increasing brain stem dysfunction.? What is going to happen is going to happen.? Only God knows the outcome.? My job is to continue to trust Him, continue to seek Him every day, continue to give Joshua meds & oxygen & monitor his stats as needed & enjoy every day I'm given with him & to give my worries to the Lord & not try to fight every battle on my own.? I so appreciate my friend writing that letter to me... for taking the time to remind me that no matter what, God already knows what day Joshua's spirit will leave his body, so nothing I do or don't do at this point is going to alter that.? Through her words, God removed a burden that was severely weighing me down & now I feel so much more peaceful about everything.? It doesn't mean I won't be devastated when Joshua dies... it just means I will be much better at completely enjoying the time that I still have with him now that I'm not allowing my brain to be consumed with worry, and that's a really good thing! ? 1 person this Sign My Guestbook | Read Tributes Written August 23, 2011 4:38pm by Kate Parker I'm writing this with only 40 minutes' sleep behind me, so please forgive any rambling.? It could happen.Early this morning, we (Charley, Megan, Adam & myself) truly believed Joshua was going to die today.? Truth be told, he still could.? There is nothing in my gut that says, "Relax... everything is fine now."? However, I am filled with a peace that I can't explain.? A peace that comes straight from God that says, "Relax... I've got this."? I know that no matter what happens, my family is not alone.? God does not sleep nor slumber (Psalm 121:4).? He is able to do exceedingly abundantly more than we ask or imagine (Ephesians 3:20).? If God wants Joshua to be completely healed here on earth, he will be.? I know God made Joshua the way He did for a reason, just as He forms every human being within their mama (Psalm 139:13).? I don't claim to know what that reason is.? Some would say it's horrible that God would "afflict" a child with a congenital birth defect.? I don't see it as God afflicting anyone... I believe we live in a sinful world, and as such, there will be children born with horrible illnesses & conditions.? It sucks.? It's painful & terrible & as the mother of a child with one of these awful conditions, I won't try to pretty up the reality.? But as much as I hate what is happening with my precious, beautiful son, I can't and won't blame God.? Even if He does not heal Joshua on earth... if Joshua's healing comes when he draws his last breath & his spirit goes to be with Jesus... I will continue to trust & praise the One who holds each of us in the palm of His hands.? The Lord I follow can work all things for the good of those who love him, who have been called according to his purpose (Romans 8:28).? What that means to me is that even when a situation is lousy, God can use it to make something good come from it.? Also, the bible says "the rain falls on the just & the unjust." (Matthew 5:45)? God isn't sitting up in heaven picking & choosing who he's going to "get"... whose life he's going to mess up.? He doesn't say, "Oh, you're someone I like, so I'll make sure nothing bad ever happens to you."? Conversely, He's also not saying, "Well, you're a total loser & you've sure screwed up your life, so I'm going to heap as much crap on you as I possibly can!"? Good things happen to people who make bad choices & bad things happen to people who make good choices. All God says is that He loves everyone, which is why He gave His son to die so that, in doing so, anyone who believes & accepts Him can have everlasting life (John 3:16).? Period.? So, because I take the bible on faith (which, by definition, is the belief in things hoped for & not yet seen ~ Hebrews 11:1), I believe that God is merciful, loving, kind, slow to anger & abounding in love (Psalm 86:15).? And because I believe that that is the character of God, who is the same yesterday, today & tomorrow, that is why I can give my trust to Him in this situation.? He'll make something good come from it.? I know He will.? He comforts me when I am desperately sad & feel like I can't cry hard enough to rid myself of the ache in my chest.? He loves me more than I can possibly fathom....He loves Joshua equally so... He is Joshua's father just as He is mine, so He is hurting right along with me because He cares about me & the things that He knows I can't understand yet.? HE sees the whole picture, but all I've got is this little puzzle piece and from my perspective, this is awful.? How difficult it must be to be God in these situations ~ to be feeling sympathy & compassion for the parents who are sobbing & begging for Him to leave their children on Earth with them, yet knowing that those precious children's purpose here is done & so He needs to bring them Home.? He can see it all... He knows where the beauty will come out of the pain & how He will use the painful circumstances in my life to reach others & bring them to Himself, too.? One day we will see it all clearly... the day He wipes away every tear... but until then, His heart is sorrowful for all of His children who hurt.? It is comforting to me to know that.? I don't know what is going to happen with Joshua or when.? I won't stop asking God to heal him so that he can remain living with my family.? I won't give up bugging Him to grant me my heart's desire (which, by the way, is scriptural ~ we're to pray persistently ~ Matthew 15:21-24).? I don't know why Joshua did not die last night/early this morning.? No, I did not want him to die (obviously), but after 5 hours of his drifting off to sleep & promptly ceasing to breathe, I truly did not believe he would be here today.? But he is.? Which is a huge relief, of course, but it also keeps us wondering when "it" is going to happen.? One of my dearest friends had a perfect analogy:? she said that we are standing on the train tracks & we can't move off while we're waiting for the train that is going to hit us.? We don't know how fast the train is that's coming ~ it might be an express, but it might be a rickety old steam engine that will take its time.? Maybe it's a passenger train that will stop 6 times between where it's currently at & where we stand. Or perhaps it's one of those monorails that absolutely fly down the tracks.? Either way, we don't need to be running out to greet it.? It's gonna get here when it gets here, so we'd better do our best to live in the moment now & try to not fret about our future.? The bible tells us not to worry about tomorrow; that today has enough troubles of its own (Matthew 6:24).? I'll admit, I'm not great at not worrying, but I'm getting lots of opportunity to practice.? I do think God is answering even that concern of my heart, though ~~ Joshua woke up about 20 minutes ago & when I asked him if we were going to go see Jesus today, he shook his head 'no'. I asked how he knew that & he told me, "Because I don't want to."? I felt led to ask if he knew when he was going to go & Joshua nodded 'yes'.? I very quietly asked, "When?"? His answer:? "When I want to."? I sought clarification, saying, "Jesus told you that you can go to heaven when you want to?"? Again he nodded, very solemn.? I kissed his cheek, then asked, "Do you want to go to heaven today?"? He said, "No."So... when will "it" happen?? When Joshua is ready to go.? Do I believe that the Lord spoke to him & is giving him the choice of when he will die?? Yes, I do.? I believe God already knows when that will be, but it will still be Joshua's choice.? How is this an answer to prayer for me?? Because I didn't want to feel like Joshua was taken from me.? I didn't want to feel like God took him away.? And now I know that it will be Joshua's choice.? Maybe it will be when he's tired of the pain.? Maybe it will be when he's just too tired to keep fighting against a brain stem that doesn't want to work properly.? But whenever it happens, it will be because Joshua decided he wanted to go see Jesus.? That will bring comfort to me one day... I am certain of it.Adam, Megan & I told Joshua that he has to tell us when he is ready to go see Jesus because he is not allowed to go anywhere by himself, so he needs to let us know.? He nodded seriously & said he would.? This is the second time he has assured me/us that he will tell us when it's time for him to go.? That is a gift from God.? It is yet one more sign that He is here, He is present, He loves us & He is going to help us get through anything that comes our way.? And that brings peace in the midst of this storm. 1 person this Sign My Guestbook | Read Tributes Written August 23, 2011 9:45am by Kate Parker Our incredible pediatrician came over (an hour drive for her) & arrived as I was posting the last update.? She just left a few minutes ago after sitting with me on Joshua's bed, stroking his hair & talking to Megan, Charley & me (Adam had fallen asleep once Joshua started breathing on his own) for... what... over an hour (I seriously have lost track of time).? She said that it seems Joshua isn't quite ready yet, and apparently he agrees.He is still satting in the low 90's, with some dips into the 80's.? His heart rate is in the 70's.? He's sleeping soundly at this point.We don't know if he's going to continue having apnea into the day & tonight or if he's going to be okay for a while before the next big episode.? The only thing we do know is that things are progressing ~ it has been just 9 days since his last big apnea crisis and this one lasted a lot longer than any other.I'm going to go sleep for a few hours now that it's almost 8am.? Thank you for praying for Joshua.? Thank you for continuing to pray.Written August 23, 2011 8:39am by Kate Parker We finally agreed to give up... and we hugged & kissed Joshua, told him how much we loved him, & called his pediatrician, who said she'd be over in about an hour... and he went to sleep & stopped breathing, but then started again.? And then he kept breathing.? And now he is satting in the low 90's, but he's breathing while sleeping. I'm relieved & utterly emotionally wrung out. 1 person this Sign My Guestbook | Read Tributes Written August 23, 2011 6:38am by Kate Parker No change. No improvement. Joshua is exhausted. Truth be told, we all are (Charley, Adam, Megan & me). How long do we continue with this? We've asked if he wants to sleep & he adamantly says, "No!" He says he is not going to see Jesus, but unless his brain stem starts working, he isn't going to have a choice. 1 person this Sign My Guestbook | Read Tributes Written August 23, 2011 5:23am by Kate Parker He's still not doing well. His heart rate bounces between 63 and 183. His O2 fluctuates wildly. Adam got the smart idea to get him playing on the Wii to keep him awake, so right now that is what he is doing with Joshua. We have anointed him with oil & laid hands on him & prayed (continuing to pray, of course). Right now I feel numb. 2 hours into this & he's showing no sign of recovering. Written August 23, 2011 4:09am by Kate Parker We could have a potentially serious problem. Every time Joshua falls asleep, he completely stops breathing. As long as we keep him awake, we can keep him breathing, but he's exhausted & wants to go to sleep. Pray, please (if anyone is even awake), that his brain stem will start working. 1 person this Sign My Guestbook | Read Tributes Written August 22, 2011 10:48pm by Kate Parker We're home again & happy to be here.? Joshua's still accessed (his port) in case we need to give him more fluid in the next couple of days.? If he tolerates the new bolus feeds during the day + continuous feeds at night routine, I'll de-access him on Thursday.? He's had a bit of a headache this afternoon, but nothing that some lortab & dilaudid couldn't control.? I got the CD of pictures from my friend who took the pictures at Joshua's birthday party, so hopefully I'll have some time in the next day or two to put together a slideshow to share.? We came home to find Joshua's room completely covered with cards ~ 186 of them, to be exact.? :)? Megan hung all of them while Joshua was at the hospital & the effect is amazing.? Walking into his room makes me feel happy...just looking around & being reminded of how many people care & are praying for my little boy is comforting in & of itself.? Thanks to everyone who sent cards... they are wonderful!One piddly thing, but I do want to mention it since I'm seeing it a lot in the guestbook comments:? Joshua is not a "Josh".? He never has been.? He never will be.? It's a nickname that we (my family & I) strongly dislike when it's applied to our little guy because it isn't his name or his nickname.? While I love reading comments from people, I cringe when I see Joshua referred to as "Josh".? Obviously, I can't stop people from calling him that, but I figured I'd mention it, anyway, in the hopes it will reduce the number of occurrences.? :)1 person this Sign My Guestbook | Read Tributes Written August 21, 2011 1:04am by Kate Parker Joshie has spent the day sleeping.? He woke up briefly, for 10 or 15 minutes, a couple of times, but the rest of the day, he's been out.? No one really knows why, but we're hoping it's just his body needing to recuperate from the dehydration.? It's kind of weird since he was active & alert yesterday, but Joshie doesn't often follow the norm, so who knows?? The hope around here is that he just overdid it yesterday & today was a sleep day to make up for it.? We'll see how he is tomorrow, but everyone is praying that he wakes up happy & rarin' to go again.He's had some times of having slow respirations (8-9 breaths per minute) & the respiratory therapist has been hanging around the peds unit just in case he's needed.? He's checked Joshua a couple of times & isn't worried since his sats are good. He did double-check everything in the room to ensure he has what he needs in the event Joshua decides breathing is over-rated, but he reassured me by saying in his experience, if he gets everything completely prepared, he never has to use it.? I told him I was happy to hear it, as I didn't really want to see him anymore tonight!? :)Written August 20, 2011 12:05pm by Kate Parker It doesn't look like today will be discharge day because we have to figure out how to get 50 ounces of fluid into this little boy over a 24 hour period with a caloric total of about 1,000 calories using a combination of pedialyte & his formula.? He is currently 8 ounces short per day, so that has to be remedied before we can leave.? Luckily, I love math & a good challenge, so this will get figured out.? :)His nurse today is awesometastic & we're working together to create a plan of action for feeds.? We know what we'd like to do, but whether or not Joshua will tolerate it is another thing.? :)? Today will be spent building up bolus volumes & praying he doesn't go into vomit universe as we ask his GI system to digest larger amounts at more-rapid rates than usual.? Dr. S & I talked briefly this morning regarding feeds & she'll be back at lunchtime to talk in-depth about everything else.? I'll share more about our conversations later.Joshua has slept well ~ is still sleeping, actually ~ and was stable overnight.? I know in my head that nothing has changed regarding his prognosis & whatnot, but in my heart, it's SO easy to want to pretend that he's getting better.? I am trying to not let myself escape into that fantasy because I know the pain of reality slapping me in the face will be worse if I do.? Still... it's a tempting place to want to hang out for awhile. 1 person this Sign My Guestbook | Read Tributes Written August 20, 2011 1:17am by Kate Parker There are times in life when you are in a position of needing to trust others to care for a person who matter to you.? Sometimes that trust gets shaken by a mistake, or a series of mistakes, that jeopardizes your loved-one's well-being.? Even though you know that the mistakes were not intentional & you are reasonable enough to understand that, the feeling remains that maybe, perhaps, putting your trust in that person is not the best decision you ever made.? Sometimes the trust can be re-established.? Sometimes you decide it's just not worth trying to salvage the situation, so you cut your losses & move on. Sometimes the risk of having someone mess up again isn't worth the potential benefit they can bring to a situation & it takes some discernment & wisdom to know what the best choice is.? That is where I find myself with regards to hospice.The snafu that occurred has shaken my confidence in them. From a social point of view, they have been incredibly helpful to my family, especially with providing grief counseling for my kids.? But from a medical point of view... well... I'm not as satisfied. I feel that by trying to follow the rules of hospice, specifically "Call them first in all situations," I subjected my child to needless suffering when they were unable to meet his needs & didn't tell me (or Joshua's ped) that fact immediately. The hospice director came to the hospital to talk with me today.? I thought she might apologize for what had happened or express how unfortunate it was that my child had to suffer for 20 hours rather than get immediate treatment & relief. Instead, she explained the limits of hospice & what they can and cannot do, as though I had had unrealistic expectations of their organization & thus it was my fault that things went so badly. Of course, no one told Dr. S about these limitations when she first approached hospice about enlisting their services for Joshua, so we had no reason to believe the ball would be dropped when a completely expected/normal-for-Joshua situation arose. Dr. S clearly explained Joshua's medical condition to hospice... I know she did... so my opinion is that if hospice couldn't meet those needs, they should have said so at the beginning.? The director told me this (snafu that occurred) wasn't going to happen again because now their office had IV fluids stocked specifically for Joshua, so when I thought he needed fluids, they could come give him a 400ml bolus, but if he needed more than that bolus, he'd have to be admitted to the hospital. She specified that if Joshua needed IV pain meds, he'd have to be admitted because they don't have the ability to have a nurse at our house often enough to administer those meds. Apparently, hospice can't really meet Joshua's medical needs & since I am unwilling to let him die of dehydration or some other treatable problem, we aren't really "meshing" very well. I don't see the point in having a middleman in this situation, and I'm not about to waste time ruling out the middleman when a situation arises that requires immediate attention. I don't see the need to call hospice & wait for them to have a nurse call me back (who may or may not know anything about Joshua) just so she can give medical advice that I am already implementing & finding ineffective when I can call our ped's nurse & get immediate results. The director is right that what happened isn't going to happen again... not because of any new protocol they've implemented, but because Dr. S & I won't let it. Joshua is in fragile condition & there's no room for big screw-ups. Bottom line is that Dr. S & I are developing a new plan for Joshua, one that will enable us to meet his needs appropriately & in an expeditious manner while still maximizing the amount of time he can stay at home. Whether or not hospice will be involved is something I'm not yet sure of.? Like I said, my trust in them is very shaken, which makes me feel awkward about continuing to work with them.? I don't feel like I can make poor decisions where Joshua is concerned.? He doesn't have enough time & I do not want to look back with regret on anything I did for him & wish I'd made different choices. ?Today, full of fluids, Joshua was HAPPY & playing on my iPod & laughing & smiling! He does not appear to be in his last days of life anymore. No, he's not going to get up & go running down the street, but he's much better than he has been the past few days. When the day comes that his brain stem is done working, we will let him go.? Until then, however, we will continue to treat symptoms that are treatable & we will do everything possible to prevent him from having hours (much less days) of pain or misery.? There's no reason for him to hurt the way he was or to get to the point that he's vomiting uncontrollably due to dehydration. Period. Okay.... enough of my frustration.? On to how Joshua is tonight!? He tolerated formula being run at 50ml/hr, but after 1.5 hours at 55ml/hr, he woke up crying that his tummy hurt.? Since his maintenance fluid level is 60ml/hr, this could be problematic.? At home, we've been running fluids around the clock at 45ml/hr because I hadn't been able to get him tolerating any more than that (he'd throw up).? That leaves him with a 8-ounce deficit every 24 hours.? As long as he drinks at least 8 ounces per day, he's fine, but as soon as he stopped drinking more than tiny sips every so often during the day (totaling probably 2 ounces per day), he got into trouble.? His body is just that sensitive to fluid imbalances.? I'm not sure what Dr. S will want to do.? We could always start TPN again ~ it ensures Joshua's fluid levels stay where they need to be at to keep him happy & also ensures he gets the calories he needs ~ but it means keeping him accessed all the time, which is an infection risk, and he couldn't be on hospice if he was receiving TPN.? I'm sure it's something we'll decide tomorrow.? With regards to his bladder function, that finally kicked back into working this afternoon, indicating that his body got used to the increased fentanyl dose & his bladder was able to compensate.? Eventually, however, there is the definite possibility that Joshua won't be able to urinate on his own anymore since he has a neurogenic bladder & thus has zero control over peeing ~ he can't choose to go & he can't choose not to.? We can cath him, but due to abnormal sensation, the experience is excruciatingly painful for him.? Dr. S & I don't want to have to subject Joshua to cathing 4 times a day if we can prevent it, so at my request, she called Dr. L, Joshua's urologist in Portland (the one who we were supposed to see this past Wednesday to discuss this exact topic) to get his advice.? The first thing he wanted to check was whether Joshua's bowel was full, because being very constipated can contribute to the inability to pee.? A KUB x-ray was done at Joshua's bedside & that showed he had a very empty bowel (yea).? Dr. S called Dr. L to report the x-ray finding & that led to Dr. L recommending a suprapubic catheter be placed when the day comes that Joshua's neurogenic bladder cannot handle the level of fentanyl he's on & he is completely unable to pee on his own anymore.? It's not a long, difficult surgery ~ it's more along the lines of placing a central line, and Dr. L gave Dr. S the names of 2 local urologists who he felt certain could do the procedure on a 5 year old when the time comes.? It's not something we need to do right now, but I'm happy knowing that we have a plan to deal with the problem of urinary retention when it becomes necessary to do so.I think we'll be discharged tomorrow & life will go back to usual; however, if we decide to begin TPN again, we might need to stay a bit longer to get that started.? I'll know for sure after meeting with Dr. S in the morning.On the roller coaster ride we're on, it seems we are on the upswing again.? I'm thankful for that, of course, even though it means another downhill slide is in the future.? Such is our reality.? For now, for tonight, though, I will smile & thank God that He is giving us more time with Joshua.? So many people have joined me in praying for exactly that & God has listened & answered those prayers, which is something I am profoundly grateful for.? I remain aware that Joshua could stop breathing or his heart could stop at any time ~ we were reminded of that today when we learned that sitting up & inclining his head forward to play a game on the computer caused him to stop breathing multiple times ~ but right now, in this moment, he is here & all is well.? Considering where he was a day ago, I will breathe a sigh of thanks & be happy with the improvement we've had.1 person this Sign My Guestbook | Read Tributes Written August 19, 2011 12:50pm by Kate Parker Popping in to let everyone know that Joshua had a restful night, as did I.? He is still sleeping, but he is not in pain (as evidenced by his normal heart rate), is breathing fine (still getting blow-by to keep his sats up without him having to work hard) & is peaceful.Before sleeping last night, the nurse & I cathed Joshua since it had been 42 hours since he'd peed.? We got out 12 ounces, which is a lot for a 5 year old's bladder to hold, but considering that he'd gotten a bit over 73 ounces of fluid infused in the 10.5 hours he'd been admitted, it wasn't a ton.? Little man was very dry & desperately needed the fluids he'd been getting (and is still getting).He woke at 1am asking for a cookie & some water.? Amazingly (or not, since God IS involved here), we had some cookies!? Our ped had brought a care package from her nurse & there were homemade cookies in the package, so I was able to fulfill Joshie's request.? He nibbled at the cookie for a minute before setting it aside, drank some water, then drifted back to sleep.At 6am, he woke again, complaining of belly pain.? I asked if he had to throw up & he said he didn't.? I felt his tummy & was shocked by how distended it was, so I spent a few minutes convincing Joshie to let me cath him.? He has abnormal sensation in his groin, so cathing is excruciatingly painful for him (it's why he was going to have surgery to enable us to cath him through his belly button).? I knew he was really uncomfortable when he agreed to be cathed.? After getting out 18 ounces (542 ml), I understood why he consented!? When I was done cathing him & the nurse had taken the diapers out (there was enough pee to completely saturate 2), I curled up next to my Joshie-bear, asked if he felt better & he told me he did.? He told me he loved me and I kissed him & then we both went back to sleep.I woke at a little before 11am.? Thanks to our nurse, no one had been allowed to open the door and disturb Joshua or me.? As a result, I was able to sleep solidly, which was SO what I needed.? I feel like I can function again.? Joshua is still sleeping & will be allowed to do so for as long as he needs.? We've started him on a continuous feed of pedialyte at a rate of one ounce per hour.? If he tolerates it without vomiting, then we'll switch him over to formula & slowly (5ml/hr) increase the rate each hour.I'm going to grab a shower before Dr. S comes to talk, but I'll update again later.1 person this Written August 18, 2011 11:30pm by Kate Parker Joshua is sleeping peacefully still.? He's had a few desats, but no significant apnea.? His heart rate has slowed to normal range, indicating that his fluid levels are getting better.? He received another bolus of fluid (an extra 400ml run in over an hour) in addition to the saline running constantly, for a total of 3 boluses since his admission.? After 42 hours of not urinating on his own, we finally cathed him & got out 12 ounces (360ml).? While that's quite a bit of pee, it's not much considering how much has been infused (almost 2200 ml ~ or 73.3 ounces ~ thus far).? Little man was very dehydrated.I was going to write out a big, hairy detailing of everything that happened during the past 24 hours, but it would take too long & after getting less than 3 hours of broken-up sleep last night (interrupted by Joshua vomiting), I am just too tired to try and string the words together to explain it all.? The abridged version is that hospice dropped the ball big-time by assuring our pediatrician that they could give Joshua IV fluids at home, but then not following through when he needed them.? Then, instead of admitting they couldn't do the continuous IV fluids he needed, there was a huge back-and-forth triangle going this morning between myself, Dr. S & the hospice nurse.? Ultimately, hospice said, "We can't do continuous IV fluids, so it's in Joshua's best interest to admit him for treatment."? Which is exactly what the ped had suggested 17 hours previously but had been assured it could be done at home.? Joshua suffered needlessly for 20 hours & I was very, very angry about it.? Because of this fiasco, we lost yesterday, today & possibly tomorrow.? Three days isn't a big deal to most people, but if Joshua has just five days remaining (that's just an example; we have no idea how much longer he'll be with us), then losing 60% of that time is reprehensible because it was avoidable.After Joshua was admitted & had fluids going & had received zofran & had finally fallen asleep (all within 20 minutes of walking in the door, by the way), Dr. S & I stepped into a private room to talk while a nurse kept watch over Joshua.? We discussed what we will do if Joshua stops breathing while here & she informed me that the respiratory therapist who was hanging around (and has been here all night) brought a ventilator in case it's needed for Joshua.? Basically, if Joshua stops breathing, he would be intubated & heavily sedated just long enough for Charley to get here with the kids.? Then Joshie would be peacefully extubated & we would hold him & say our goodbyes.? Intubating him would not be for resuscitative purposes.? It would be to allow us the time to get the family here only.? We would not attempt CPR or use medications to try & keep his heart going.? The paper Dr. S filled out as we talked about each point was a modified code sheet.? When she signed it, she paused halfway through her signature & quietly said, "I'm so sorry, Kate."? It pained her to sign those orders in the same way it pained me to watch her do it.?Dr. S spoke with the hospice nurse & the hospice director about what happened.? I've been assured it won't happen again.? Dr. S & I came up with our own plans for what we'll do if hospice can't get their act together quickly enough to help Joshua in the future.? As much as we wanted him to be able to be at home, we'd rather he be in a hospital setting & kept pain-free & peaceful than to be suffering at home with pain & constant vomiting.? We want our remaining time to be as happy as possible, as peaceful as possible, for our ENTIRE family.? That can't happen when days like yesterday/today occur & since Joshua doesn't have many days left (it seems), Dr. S & I are not going to LET a repeat of the past 24 hours occur.1 person this Sign My Guestbook | Read Tributes Written August 18, 2011 6:27pm by Kate Parker Joshua had to be admitted to the hospital because hospice could not manage him at home.? I don't have time to write a full update right now, but here are the 2 status updates I put on Facebook:We're here, Joshua's port has been accessed & he's got IV fluids running as fast as they can get them in. His glucose was low (no surprise), but no other labs were ordered. I guess that's because he's on hospice, but I think I'm going to ask Dr. S to check things because I'd like to know if the lack of peeing is due to his kidneys shutting down (ie: he's going to die within days) or if it's due to dehydration/fentanyl increase.? I'm emotionally wiped out & we just got here. Not the best way to begin an admission. This one should be very short, though. I haven't talked to Charley yet... haven't been able to reach him. Praying Joshua does not die today or tomorrow because I really don't want his last 24 hours on earth to have been these past 24 hours. It would be a horrible memory. I'm working on a blog post to explain what happened. Will link when I post it. Labs showed Joshua's kidneys & liver are just fine. His glucose was lower than the finger stick showed, so he's getting a bolus of that in addition to saline. Hospice nurse came for a couple of hours, as did Dr. Sibley (who also brought flowers & a stuffed doggy for J). He's a modified code, meaning that if he goes into respiratory failure, he'll be put on a ventilator until Charley & the kids can get here, at which time we would do a 'peaceful extubation' & say goodbye.? He is currently sleeping, satting at 94% with 3 liters/minute oxygen (blow-by). He hasn't thrown up since getting IV zofran.1 person this Sign My Guestbook | Read Tributes Written August 18, 2011 2:58am by Kate Parker Joshua woke up briefly, had a bath after throwing up all over his bed again & getting pain meds for continuing headache. Before drifting back to sleep, he said pretty soon it would be time to go see Jesus. Not tonight, but pretty soon.I'm not surprised, but I am profoundly sad.? Above how I feel, though, I hurt for my son & I want him to not be in pain anymore.? I have no desire to exponentially increase my own heartache, which is exactly what will happen the moment Joshua's spirit leaves his body & I am forced to live the rest of my life without him physically near me, but I am so sad for my child & the level of pain he endures & I want him to get relief.Pretty soon.? How those words hurt!? The thought of Joshua dying devastates my heart, pierces me like a sword, yet at the same time, so does watching him hurt & being unable to help him despite doing everything I can think to do.? Tonight my prayer is that God would enable Joshua to have as many good days as possible before "pretty soon" arrives.? I have a million memories of him already, but I'd like to mint another thousand or two before it's time for him to go. I know God can make that happen, so I'm praying it's what He wants to do.1 person this Written August 17, 2011 10:43pm by Kate Parker Two posts from me in one day.? You know that can't be good.Joshua didn't wake up until 5pm & when he did, he had a horrible headache.? He also immediately began throwing up from the pain.? Repeated doses of lortab & dilaudid did nothing to get him comfortable, so I added another 12 mcg/hr fentanyl patch (with ped's permission, of course).? It takes about twelve hours for the fentanyl to be fully effective, so we were still battling head pain.? He was throwing up everything Megan & I gave him, which only made his fluid situation worse (he can't tolerate any kind of fluid imbalance & acts very dehydrated even when, technically, he's not that dry). The last wet diaper I changed was at 2am... he hasn't peed in 19 hours.? We switched him from formula to pedialyte, lowered the rate he was getting it (again, not helping with the dehydration issue, but trying to help control vomiting), gave more zofran & erythromycin and waited to see how he'd do.? When it became apparent that nothing we were trying was helping, I called hospice & our pediatrician for help.? Dr. S agreed that Joshua needed fluids, but hospice wasn't able to get them set up tonight.? Since we'll have to wait until morning, the hospice nurse suggested giving a dose of Imitrex.? I was willing, but didn't have any syringes (had been waiting for them to be delivered), so the nurse came over with a few & gave Joshua the shot.He's now asleep.? His blood pressure is high, his heart rate is high, but thankfully his oxygen saturation is normal.? Please pray it stays that way and that the increased fentanyl will control his pain and that we will be able to get him hydrated again without problems.To end on a positive note, our beloved pediatrician called me to get directions to my house so that she can drive out (45 minutes) to visit for awhile tomorrow.? It will be really comforting to see her & I'm touched that she wants to see Joshua.1 person this Sign My Guestbook | Read Tributes Written August 17, 2011 4:19pm by Kate Parker This is definitely a roller coaster we're currently on.? I'm not complaining because it beats the alternative;? just stating a fact.? Joshua has had a mix of good & bad during the past couple days.? For the majority of each day, he's happy & feeling well, but there are times every day where he stops breathing or his heart rate drops below 50 beats per minute.? Thankfully, he pops out of the apnea with only a little encouragement to take some deep breaths & his heart rate doesn't stay low for too long.? But still.... the fact that it's happening more & more often doesn't bode well for the future.? I know... it's not like it's surprising.? It's just really, really sad.? He had an appointment scheduled with one of his specialists in Portland for today that got cancelled due to Joshua not being able to make the 4.5 hour trip north. Not being able to make that trip means all of the doctors & nurses that have taken such good care of him all of his life won't have the opportunity to tell him goodbye (there was going to be a get-together from 5-7pm tonight specifically for that purpose).? It also means I won't have the opportunity to hug all of them one more time with Joshua & that, quite honestly, makes me sad.? It probably sounds crazy to anyone who hasn't spent months & months in the hospital, but the doctors & nurses at Emanuel feel like extended family to me.? Going to the hospital, while not something I wanted to do, was something I was comfortable with when it had to happen. Being surrounded by professionals who knew my son as well as the Legacy staff did made it possible for me to relax in a way that I could not do when I was taking care of him by myself at home.? As such, I am sad about not being able to take Joshua to the hospital to say goodbye, both for myself & for the nurses & doctors who have loved him & done so much for him.? Today, we had hoped to be able to take Joshua out for a short outing with the family, but he just wasn't up for doing it.? Right now, at 3:45pm, he is still sleeping.? It makes me tremendously sad that he's not able to go out & "do" stuff anymore...? oh, who am I kidding... pretty much everything makes me sad because everything is a reminder of the reality that my son is dying.? My precious, 5 year old little boy is dying.? He isn't out riding a bike, or playing in a bounce house at a friend's birthday party, or getting ready for kindergarten.? He sleeps & plays games on his Wii.? He cuddles with me on his bed & laughs his incredibly-contagious laugh when something tickles his funny bone.? He cries when the pressure of blocked CSF compresses his brain.? He stops breathing at random times during the day & has to think about every breath he takes until his brain stem goes back to doing its job.? He has no chance of growing up unless God grants him a miracle cure.? That's the reality.? And the reality is tearing my heart to pieces.1 person this Sign My Guestbook | Read Tributes Written August 15, 2011 1:27am by Kate Parker Thank you to everyone for "being here" for my family & me during today's crisis. I haven't been so scared since April 14th (day he went into respiratory failure), but while he was struggling, I was very calm, which is something I attribute to God granting me peace. Joshua is seeming to be okay right now as his brain stem is behaving again. If you still want to pray, pray he continues breathing for many more days to come. We just don't want to say "see you later" to our little boy... not any time soon. 1 person this Written August 14, 2011 7:21pm by Kate Parker For right now, his brain stem seems to be working again. It keeps conking out, though, and then he struggles.? He's visibly very tired. At times I have to remind him to take each breath. Hospice nurse advised to cuddle him, let him have his Wii controller if he wants it & basically just love on him & comfort him. If this is "it," we won't be able to keep him breathing. If it's progression of symptoms, then we could still have time with him. We're praying for time... thankful that right now, he's breathing without reminder. 1 person this Sign My Guestbook | Read Tributes Written August 14, 2011 6:17pm by Kate Parker This is Adam, pasting an urgent prayer for Joshua Parker!Joshua saying he's tired of breathing. That he's been breathing for a long time and it hurts to breathe. Adam asked what would happen if he stopped breathing. I asked if he would take a nap & he said, "No, I'd go to heaven." I asked if it was time to go see Jesus and he answered, "No." So we told him he had to keep breathing. This isn't going well. PLEASE PRAY1 person this Sign My Guestbook | Read Tributes Written August 13, 2011 1:11pm by Kate Parker Joshua had a much-better day yesterday relative to the day he'd had on Thursday.? No more vomiting, pain under control & he went back to tolerating his formula (Nutren, Jr with fiber) through his g-tube instead of just pedialyte.? All very, very good things!? :)He woke up this morning happy & wanting to play Lego Star Wars with his brothers, which brought a smile to my face.? Last night, before we went to sleep, we had a little chat.? I asked him if he knew he was sick & he matter-of-factly answered, "Yes."? I asked if he knew why he was sick & he told me, "No," then asked, "Why am I sick?"? I thought about how to answer that in terms he would understand, then explained, "Well, there's a part of your brain that isn't working correctly, and we can't fix it."? He was quiet for a moment before asking, "Why can't you fix it?"? I hugged him close (we were cuddled under the covers in bed) & quietly answered, "Well, because the part that doesn't work right is the part that controls your breathing & your heart beating, and no doctor can fix that."? Joshua paused for a brief minute before telling me, "Okay, then I'll go see Jesus."? Then he smiled & added, "Then I will be able to run."? I smiled back (as tears filled my eyes) & agreed with him, saying, "Yep, you'll be able to run when you are with Jesus."? Joshua nodded in satisfaction, rolled over & announced, "Okay.? Good night now!? I love you."? So... yes, he's aware that he's declining.? I don't think he understands that he's dying, per se, but he does know that he will be going to see Jesus & he will be made whole & able to run like his brothers. He knows his brain can't be fixed & while that fact bothers him, the fact that he doesn't have to have surgery anymore is a positive big enough to override the negative.? For me, that's good enough.? The only thing that matters, actually, is that Joshua is at peace with what is happening, and he is.? If he were broken-hearted at not being able to run around anymore, it would be harder to accept everything.... knowing that he is not at war internally over his decline gives me strength to accept it, as well.To end this update on a happier note....? yesterday, Joshua informed David that, "Only Mom is awesome."? Then he began chanting, "Mom is awesome & her is pretty!"? He told Adam the only girl name he likes is mine.? When I, overhearing this conversation, asked Joshua if he liked "Kate" or "Mommy," a big smile came to his face & he threw his arms in the air as he yelled, "MOMMY!"? :)? I love this little boy so very, very much......? praying that the Lord extends the number of days we are blessed to keep Joshua here with us.1 person this Written August 12, 2011 11:15am by Kate Parker Popping in to give a brief update ~ Joshua did not throw up anymore during the night & after 1am, he did not have any more apnea/bradycardia.? He is sleeping peacefully & just a few minutes ago, as I gave him some of his scheduled meds, he was smiling in his sleep, so I guess he was having a good dream.? :)I've talked with Melissa this morning & we agree that it *seems* Joshua is over the worst of this event.? We believe the vomiting was caused by his pain getting out of control & we discussed things we'll do the next time we start to see signs that he's needing more pain meds.? Basically, we'll increase his fentanyl when we realize we've had two days in a row of needing a lot more dilaudid & lortab than usual rather than waiting to see what happens.We'll see how he is when he wakes up, but if he does not wake up vomiting, then I will switch him back to formula (at a slower rate to begin with) & hopefully he'll be happy to sit up & play on his Wii again.? That's what we're praying for this morning.Thank you to everyone who said a prayer (or two or ten) for Joshie last night.? They helped!? :)1 person this Sign My Guestbook | Read Tributes Written August 11, 2011 9:06pm by Kate Parker Joshua is having a very bad day.It started last night, actually, with an unrelenting headache that would not get knocked out with lortab & dilaudid, so I called hospice & got permission to increase his fentanyl patch.? I was hoping the pain was just a sign that his body had gotten accustomed to the fentanyl dose he was at & thus he needed more to stay comfortable.? Adding more fentanyl per hour to his bloodstream & giving another dose of lortab did the trick, and Joshua spent about 90 minutes playing a game on the Wii before going to sleep for the night.This morning, he didn't wake until 11:40am, which didn't surprise me since he generally sleeps more for the first 24 hours after we increase his fentanyl dose.? However, when he woke up, it was to sit up & projectile vomit hours' worth of undigested formula all over the bed.? NOT an auspicious beginning to the day, for sure!? After he puked, he immediately fell back to sleep, but within 30 minutes, was awake to vomit again.? I turned his feed down from 60 ml/hr (2 ounces/hr) to 45 ml/hr & gave him more erythromycin to see if I could get his gut contracting more efficiently so his stomach could empty properly.? He woke up soon thereafter and was groggy, but coherent.? He wanted to play on the Wii with David, so I got him set up to do that & I thought things were going to be okay, but they weren't.? Joshua began complaining of head pain after just a few minutes, so I had him lay down while I got him some lortab.? After 30 minutes had passed & he was still laying on the bed, moaning & saying his head hurt "really, really a lot," I decided to give him a shot of Imitrex.? That made him drowsy, as it always does, & he went back to sleep.? At that point, I called Joshua's hospice nurse, Melissa.While talking with her about what was going on, Joshua woke to throw up yet again.? I told her I was going to switch him to pedialyte at 45 ml/hr & she agreed with that decision.? Then he slept for 4 more hours before waking to throw up a small amount & go back to sleep.? Before he drifted off again, I asked him how his head felt & he whispered, "A little good."? I asked if it still hurt & he nodded, so Melissa had me give him some lortab.? Half an hour later, when he again woke specifically to say his head hurt, I gave him dilaudid.? He's been asleep ever since.The plan is to get through tonight using lortab & dilaudid as needed, , then tomorrow morning I will call Melissa & let her know how the night went.? If Joshua has continued throwing up, she will arrange for him to get IV fluids started at home.? If his pain is still not controlled, we'll increase his fentanyl patch again.? Please pray that we'll get his pain & vomiting under control & that he'll soon feel well enough to play games on his Wii again.? It's only been one day, but I miss his smile. 1 person this Sign My Guestbook | Read Tributes Written August 10, 2011 11:49pm by Kate Parker I want to share something that a dear friend of mine wrote on Facebook (and gave me permission to post here).? Anneliese came to Joshua's birthday party this past Saturday & took photos to memorialize the day for us.? One of her pictures is the one you see here.? It will be her pictures that I share soon.? Anyhow, of all the people who know what is going on, she knows the most because she is an "in real life" friend who spends time with me & my kids.? I share everything with her, so she is privy to details I don't always take the time to write out in blog posts. She has a son battling Duchenne Muscular Dystrophy (a degenerative condition that will dramatically shorten his lifespan), so if anyone is able to "get" what I'm going through with Joshua, it's Anneliese.? That's why her perspective on Joshua's party was very interesting to me & why I wanted to share it here...? I thought maybe it would be helpful and/or interesting to others.? I hope you'll take the time to read what she wrote, which I've copied & pasted below.? The picture you see at the top of this post was originally located at the end of Anneliese's story (caringbridge won't let me embed a photo in a post).What Grandma said..by Anneliese Villegas on Wednesday, August 10, 2011 at 1:14amMy grandmother and I did not get to spend a lot of time together because of distance.? But the times we did spend together were wonderful and as I grew up, even more valuable.? It took becoming an adult, a mother, and a grandmother to really understand some of the wisdom she imparted.? As I have gained more life experiences, things she has said have also bloomed and are more fruitful.? My understanding grows.One thing she told me, a long time ago, God rest her soul, really hit home with a much deeper meaning this past week.? She had told me, "Never believe a thing you hear, believe only half of what you see." Politicians are a great example of the first.? Photography is a prime example of the second.?I had the privilege, honor, gift, of spending an afternoon with little Joshua Parker this past Saturday.? Kate, his mother and my best friend, threw a lovely 5 1/2 year old Birthday/Memory making party for him.? In many ways it was like any party a mom would hold for her child.? There were colorful tableclothes, plates, cups, forks, and shiny balloons adorning the tables.? There were colorful flags marking off a game of Hunt for the Legos.? Kate had put a lot of thought into the location. . . next to the bathrooms and playground.? The cake was ordered.? Yes, the lovely Lego cake my daughter, son-in-law, and I made just for Joshua.? Presents sat on the corner of a blanket.? At first appearance this was a funtastic birthday party that any child would love!But it really was more than that and more than that was happening.? You see, it was funtastic and the photos show it.? Me, the photographer, strolling here and there to capture every moment, each face that came, the colors, and the festivities.? But the photos really only show half of the story, just as the decorations from afar also did not show the whole story.This was a party for a frail little boy.?Joshua, the little boy whom I love so much, whose smile will light up the dark....that little boy whose birthday we were celebrating is also so ill.? Very ill.? Hospice ill.? And though I know Kate, have had her cry on my shoulder, share her pain and her joys, share what is happening with Joshua so I was not clueless----I realized that day how utterly clueless I really was.? Yeah.? I believed every word Kate has said about Joshua's condition.? I've seen him myself and knew he was not a healthy little guy running around making troubles that 5 year olds should be making.? BUT...even I had to reflect later that night and cry and sigh at just how tired his body was.?What you see in photos are only half the story.? You see, Joshua got to the party smiling.? He sat on the blanket and laughed and giggled.? He was thrilled to have all the colors and festivities in his honor.? I also saw him lay down after 15 minutes and get quieter while we waited for all the guests to arrive.? I saw his face pale.? And after resting for 15 minutes he was sitting again and joking with his sister.? And this was only the beginning.When you look at the pictures you see a very happy Joshua blowing out candles on his birthday cake.? What was before that was a little boy with a sudden massive headache rolling on the blanket not wanting to look at the camera or anyone.? He wanted Adam, his big brother to put his arm around him while mom got out the medications that would hopefully make his headache lessen or go away so he could feel good again.? And rally to feel good he did!? I also saw a little boy with so much determination in his spirit to rise up for another round of fun!? And he did that over and over during the 3 hours we were there.?3 hours you say?? Oh boy!? Wasn't that too much for him?? Noooo, it took that long because everyone would take a break whenever Joshua took a break.? And he took a few.? He picked a lovely clover for his mother.? Kids and flowers (that we call weeds..figure that out)...and then he wanted to plant it.? You see him planting this clover and it's so darn cute!? And yes, it was precious.? Kids are so precious.? What you didn't see was that his mother carried him to that spot 15 feet away from his blanket.? And his mother carried him back when he was done.? Joshua needed yet another bit of time to rest.?Presents, he really felt pretty ok when it was time to open presents.? You see his smile and joy.? I heard his smiles and joy!? I loved how he would cry out? "THANKYOU" while scanning all the faces because he did not know yet who gave it to him, nor what was in it!? And then after opening and finding out what it was he'd look around and shout "THANK YOU" again.? He'd hug some of them.? Many of them he'd say, "This is what I ALWAYS wanted!"? LOL? Yes, he was too cute.? But what you don't see is that gift opening flat wore him out.?? He got grey/pale, laid against his brother, laid on the blanket.? He rested.? He really wanted to feel good enough to hit his pinata.And then Joshua stood up.? Yes.? That little brave boy rallied his body to hang in there cuz this was all just so darn fun!? Don't misunderstand me, he did have a wonderful and fun time!? He really did.? It just required a lot of rests in between activities that most little boys could cruise through without slowing down an inch.? Let me backtrack, Joshua didn't stand yet.? He crawled to where his big brother Adam was hanging that intriguing, candy filled LegoMan pinata!? He was sooo excited!But don't believe half of what you see.? Joshua had his bat, the one he wanted and he went first.? He stood there, on his broken feet with the little wads of paper between his toes to keep the bones from "bothering him" as he likes to say it, and smiled from ear to ear.? His sister Emily hovered nearby just in case he would lose his balance. The moment had arrived!? He put all his energy into swinging that bat as hard as he could and we all watched.....as it hit Legoman with a?tiny *thunk*.? Legoman wiggled a little bit.? The effect of that soft *thunk*, while making some of us sad that it took him all his strength to get such a small effect, did not deter him from smiling the biggest smile of all, nor did it keep him from whacking at Legoman a few more times.? 4 or 5 tries and he had to--------sit down again.? But after David, Sarah, and Isaac had their turns he had got up enough gumph to give it one more valiant try!? He proudly stood again, again with Emily nearby in the event he'd lose his balance, and he swung as hard as he could!? This time Legoman swung a tiny tad as the bat hit and made a small *thud*.? It was evident Joshua was getting tired and fading fast.? We yelled, "Emily...go for it" or something to that affect.? And whack it she did!!!!!? Candy flew!?What you see is Joshua standing, feet apart so he wouldn't fall over, and gathering his candy.? What you don't see are his siblings gathering much much faster and bringing candy over to Joshua.? What you don't see are Isaac, Sarah and David bringing handfuls of candy to Raymon who can neither whack or gather in this game of goodies.? What you don't see is how blessed my son was that he was so included and thought of!? And what you don't see is Adam going to Joshua's side to help him get his pile of candy and put it in a bag so Joshua wouldn't need to walk and could rest again.The Hunt for Legos game never happened.? Joshua was tired.? His body was tired.? He was done for the day.? His siblings ran around gathering the legos with zeal.? People began to clean up the party.? Joshua was in his wheelchair obviously worn out.?What you see is a very content Joshua watching his balloons and his wish fly heavenward.? Up to the sky, up to God, maybe escorted by the angels.? What you didn't see was the pale face and tired eyes just before letting go of his balloons.? You didn't hear his mother wish that her baby would be spared and God to please touch him.? And you didn't hear her ask Joshua if he wished that God heal him and him, in his sweet little boy innocence and ways reply,? "No.? I wished for legos!"? And you didn't hear him in a quiet voice say, "Can we go home now?"?Only believe half of what you see.? What the photos don't show is the tears Joshua's mom shed as she watched her son get tired from doing things most of us would consider non-taxing, things other 5 year olds do without slowing down at all.? What you didn't see was the family dynamics and how each one was attuned to Joshua's needs, each dancing in unision the dance the moment required.? Joshua had an apnea episode.? Those near Joshua talking firmly and shaking him to "breathe Joshie, breathe!", and other family nearby at the ready...each doing the dance they've had to do more than a few times.? When Joshua was rallied up and smiling...so was the family.? What the pictures don't show is the courage, the heart hurt, the beauty,? the quietness, the family cohesiveness, the LOVE that I saw.?What the photos fail to show is a little boy whose spirit is willing but whose body truly is failing him.?Even though I *knew*, even though I had a clue..........I had no idea.The photos only show half the story. 1 person this Written August 10, 2011 1:26am by Kate Parker 2 months. That's the estimated timeframe given to us today by the hospice nurse, who based her guess off how Joshua has been doing since she met him & her past experience. Yes, I know that no one aside from God knows exactly what is going to happen & when. I also know that, emotionally, it doesn't matter ~ the fact that my little boy has declined to the point that anyone would guess he has just 2 months left to live is brutal, & the tears on my cheeks are an outward sign of the pain I'm experiencing within.I know no one knows what to say, but honestly, just knowing you care is comforting at this time.? If you have a story of how Joshua has touched your life in some way, please feel welcome to share it with me.? Knowing that the struggles Joshua has been through have somehow been used by God to help others is comforting, too.? I guess I'd just like to know that everything he's been through hasn't been for nothing... that there was a purpose for all of this, even if I can't see it right now.? I know in my heart that is true, but I'd like to have tangible "evidence" if at all possible, and reading other people's stories of Joshua provides that for me.? On another note, I want to clarify something.? I had someone email me because, as she wrote, she could tell I was mad at God.? No, I'm not.? Sincerely.? I am not angry.? I am deeply distressed.? When I say I want to scream at God, "Why?" because He could heal Joshua if He wanted to, that isn't a cry of anger.? It's a cry from the most broken part of my heart... and yep, there's a big difference.? I'm not mad... I'm sad.? 2 Corinthians 4:8-9 says, "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." That's how I feel.? This is a valley... it's tearing my heart to pieces & making me feel more sad than I ever have before, but I still cling to God's promises because that's where my faith lies.? He promised that we would have troubles in this world.? He guaranteed that life would be full of things that sucked hardcore, but He also assured us that He would walk with us every step of the way & we wouldn't face these sucky things alone and every day, I find that to be completely true..? I'm stressed & hurting, but I feel God closer to me now than ever before.? He is showing His love & provision for my every need at every turn.? He moves on people to email me out of the blue or to write something on my Facebook wall or to call me or to stop by for a visit and they'll all just 'happen" to say something that is exactly what I needed to hear at that moment.? God has not abandoned me, and I am not angry with Him at all.? If what I've written in previous posts led anyone to think differently, I apologize.? If I were angry, I'd admit it, but since I'm not, I don't want people misunderstanding what I say.Joshua's continual decline & our inability to fix it is heartbreaking.? But in the Bible, Job said to his wife, "Shall we accept good from God & not trouble?"? (Job 2:10)? And as hard as that statement is to swallow, it's the truth, and I can accept that (acceptance doesn't mean I have to like it).? Jesus told us, "In this world you will have trouble. But take heart! I have overcome the world.”? (John 16:33)? I find that to be another powerful truth to hang onto.I know I'm all over the place nowadays ~ sometimes seeming pretty okay & other times a sobbing mess.? And that's how I am.? Some days are harder than others.? Some days are more emotional.? If Joshua is having a good day, I tend to do better, as well.? When Joshua is struggling, it's more difficult to not think about what's coming down the pike & that makes tears come more easily.? My faith doesn't waver, though.? I still absolutely, completely, 100% know that I know that I know that God has a plan, that His plan is good, and that even when I don't understand it or see it, He's working things out according to the plan He has because He loves Joshua & me more than I can imagine.? My hope is that I will be given an understanding of how Joshua's life & death fit into that plan & into the promise stated in Jeremiah 29:11 ~ " For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future"? ~ but so far, all I have been given as an answer to my inquiry of, "Hey God, how does letting Joshua die prosper & not harm him?" is "You don't know what I'm saving him from."?? I'll admit, that's true.... I don't.? So what that leaves me with is trusting what I can't see.? And that brings to mind lyrics from a song by BarlowGirl...."Though I can't see my story's endingThat doesn't mean the dark night has no endIt's only here that I find faithAnd learn to trust the One who writes my daysSo I'll stand in the pain and silenceAnd I'll speak to the dark night I believe in the sun even when it's not shining I believe in love even when I don't feel itAnd I believe in God even when He is silent"I don't want Joshua to die.? I would give anything to have him stay with me.... to be able to teach him to read & how to drive & to see him grow up & get married & become a father.... but above what I want, I trust my Father in heaven, and I know that if He does not choose to heal Joshua on earth & allow me the privilege of continuing to hold him & talk to him & watch him grow up, then there is a reason for it.? And honestly, having that reassurance helps.? It doesn't make anything hurt less, but it reminds me that God can use every situation to make something good happen, even situations that are full of the suck like this one most definitely is. 1 person this Sign My Guestbook | Read Tributes Written August 8, 2011 6:56pm by Kate Parker We're seeing progression of symptoms with Joshua.? He's had several days with both apnea & bradycardia episodes, as well as increasing head pain.? We have been able to get him breathing again (obviously), his heart rate does eventually come back into normal range, & we have enough medication to make him comfortable, so things are as "okay" as they can be considering the circumstances.? Still, as Joshua's hospice nurse put it, "Knowing that something is expected to happen doesn't make it hurt any less when it does."? Indeed, that is the truth.? It's been 3.5 months since his final surgery, though, so seeing increasing signs of brain stem compression is not a surprise.? It's just very, very sad.1 person this Sign My Guestbook | Read Tributes Written August 7, 2011 11:26pm by Kate Parker The party yesterday was a beautiful, fun, memory-making event.? I had a few emotional moments, but there was always a friend nearby who noticed & came over to wrap their arm around me, which helped me to regain my composure.? Joshua started out happy, then developed a headache that required laying down & repeated dosings of Lortab & Dilaudid to knock down enough that he could perk up & go back to enjoying his party.? Thankfully, though, he was able to have fun in spurts & for that, I was very grateful.? He had one big apnea episode that shocked a lot of our friends who had never seen Joshua stop breathing, but I think the dose of reality was beneficial in a way. It's really easy to convince yourself that Joshua looks good when he's not in pain (or throwing up or running out of energy) & therefore is doing okay, but that isn't an accurate assessment & looks can be very deceiving.? While I'm not happy that Joshua became apneic at the park, I'm glad some of our friends got a tiny glimpse of what happens when he stops doing well, even for a little while.? Overall, he had a marvelous time & his smile was as big & bright as ever, which was lovely to see.? He had fun opening all of his presents & would yell out, "Thank you!" before & after opening each gift.? Many times, he would tear off the wrapping paper or pull open the box & exclaim, "This is just what I always wanted!" and hug the present.? It was adorable.? :)? He was incredibly, overwhelmingly blessed by friends & strangers who had sent him toys and honestly, it was a very special time seeing how many people care about my son. ? ??? My friend, Anneliese, is a photographer & she captured the day for us in pictures as a very special gift.? She will be putting together an album that I can share, and I will give the link when it's ready, which should be by Friday.? I just wanted to jot a quick note letting you know that yes, the party went well & yes, Joshua had fun & yes, I did, too.? I'll give more details when I have more time to write, but Joshua has had a very rough day today (no surprise to us after his busy day yesterday) & I need to get off the computer for now.Written August 6, 2011 12:36am by Kate Parker Tomorrow is Joshua's Lego party. I know I'm supposed to be excited & I am looking forward to celebrating with my little boy, but I've been very emotionally torn apart while preparing for this party, too. It hurts... a literal ache within my chest... to have planned this super-fun event while knowing that it will most-likely be the last party I ever get to have for Joshua. I cried while printing out invitations & addressing the envelopes. Tears rolled down my cheeks as I stuffed candy into the Lego man pinata. I've had watery eyes & a sniffly nose for most of today because while it's going to be a fun event, I cannot be happy knowing my son is dying. Oh sure, I can smile & laugh during the day at funny things & I can genuinely enjoy spending time with Joshua, but I cannot summon up happiness overall. I've been trying & I just can't do it. My child is dying. That has trashed my ability to be happy. I wish it hadn't. I want to be happy. I do. But how can I dance through life when one of my dance partners is fading away before my eyes?You guys, this hurts so much. The pain that I feel tears at me, usually when I least expect it. It approaches like the wave on a beach & just like the ocean crashing onto a shoreline during a storm, the pain envelops me & threatens to drag me under. I am holding myself together for the sake of my kids, but I honestly do not know how I am going to make it through this one. I've dealt with a lot in life... a lot with Joshua... and I've been okay. But this? Losing Joshua? I can't do it. I just can't. I so desperately do not want to do this.... I do not want to be a member of the club. Thanks but no thanks. I hate watching Joshua decline. He slept until almost 3pm today & he's been exhausted ever since he woke up. He did nothing yesterday but sit in bed & play the Wii, so why was he so worn out?I don't WANT him to be worn out! I want him to stand up and play! I want him to be loud & boisterous & I want him to want to go outside & ride the scooter. I want him to want to go outside & plant sticks & rose petals so that they'll grow into "cwees". I want him to insist on carrying cups of water outside to water his sticks. I want the little things we had just last month but have now gone away!I don't want him to die. I don't want him to wear out. I want to fix his body & make it work properly somehow. I want to hold him all day & all night & I never want to let him go. God can't have him... I want to scream that at Him. How stupid is that? Like I have ANY control over this? If I did, it wouldn't be happening.I want tomorrow to be a wonderfully-fun day for Joshua & my other kids, so I will do everything I can to make it a success. I want everyone to have SUCH a good time that the memory of Joshua's 5.5 birthday party is one they will carry with them their entire lives. I want to see him smile & see his eyes crinkle with happiness & I want to take a million pictures & video, capturing every moment (& yes, I know that I can't realistically get it all, but I still want to). And oh, dear Lord, how I want to be able to celebrate his 6th birthday next March 2nd. I would do anything to make a way for Joshua to grow up in our family & stay with us forever. As for tomorrow, though, I will smile & I will attempt to live in the moment & not think about how yet another piece of my heart is getting torn off & chewed up by the monster that is taking my son away from me. Wish me luck with that.1 person this Sign My Guestbook | Read Tributes Written August 3, 2011 8:17pm by Kate Parker Joshua has had a relatively-stable week.? Intermittent bouts of apnea & bradycardia have been occurring more often, but not so frequently that it's scary.? He has had a few outings this past week ~ one was a success & the other wasn't so great.On Sunday, we took Joshua to church because one of his brothers & one of his sisters were getting baptized and both Charley & I wanted to be present for that event, so even though it meant having to wake Joshua to go, we went.? After church, there was a picnic in the park & we decided to go for a bit and see how Joshua handled it.? We were prepared to leave as soon as he was "done".? He licked some frosting off a cupcake, then rested in his wheelchair in the shade for awhile before Megan was able to convince him to let her take him through a 'car wash' that had been set up.? The car wash was a rectangle of PVC pipes with holes drilled along the pipes & two hoses running into either side of the rectangle to cause water to spray out of the holes in the pipes.? Kids would run through the 'car wash' & get soaked.? After some cajoling, Joshua was ready to give it a try.? Megan held him, shielded his eyes with one hand & ran him through the spray.? They both loved it & we were all rewarded for Megan's effort with Joshua's belly laughs, which made everyone who heard him smile.? Megs took her brother through the car wash half a dozen times before Joshie wanted to be done.? We got him dried off, changed into dry clothes, back into his wheelchair & hooked back up to his tube feed and then Megan & Adam took Joshua to a shady spot about 100 yards away from where the action was so he could rest.? Ten minutes later, it became clear that Joshua was worn out & it was time to go, so we said our goodbyes to our church friends & headed home.? The second outing was yesterday.? It started with an email I had sent our pediatrician the night before, alerting her to Joshua's complaints of intense pain in his shin just below his knee.? The concern of Joshua's hospice nurse & myself was that he could have broken his tibia, so I wanted to know if the ped could fit Joshua in for a quick check & an x-ray.? Yesterday morning, the ped's nurse called & confirmed that yes, Dr. S would like to get an x-ray of Joshie's leg & asked me to bring him in for a 12:00 appointment.? Since it's a 45 minute drive from our house to her office, I knew I'd have to wake Joshua by 10:30 to get him ready & out of the house on time.? He was having none of it.? I could rouse him & he would open his eyes, but as soon as I stopped messing with him (ie: changing his diaper, putting clean clothes on him), he went right back to sleep.? And that is how the ENTIRE day went.? He slept from being in his bed to being moved to his carseat in the van to getting put in his wheelchair at the pediatrician's to being examined by her to going to the hospital for an x-ray.? He slept while waiting for the x-ray, while being transferred from his wheelchair to the x-ray table & back again, while going back to the ped's, while being put in his carseat, while driving to the grocery store & then getting transferred to his wheelchair yet again.? He slept the entire time we were in the grocery store, while we put him in his carseat again & then the entire drive home & while we got him out of the van & back into the house.? He did not wake up for the day until 10 minutes after we got home, which was at 4:40pm!? And before you ask, no, he didn't stay up all night ~ we went to bed before midnight.? So... our outing was kind of a bust since he slept through the entire thing.? He has received almost 3 dozen birthday cards from all over the world & every single one is gracing one of the walls in his room.? He has gotten a few musical ones, which he loves, but I have to admit that my very favorite at this point came from a family with a 7 year old son named Asher who drew a picture of a kiddo & a snake and wrote, "Hi Joshua, My name is Asher and if you wanna be friends in Heaven I'll be playing tag with a cobra."? His mother wrote, in part, regarding her son's note, "he thought about what he would be doing in heaven and wrote you this note so you guys might be able to find each other one day."? Reading that brought me to tears.? Just thinking that there was a little 7 year old boy across the country who would want to be friends with my little boy one day in heaven.... well.... I don't know how to explain what I felt when I first read it or what I feel now (which is the same thing)... it touched me deeply.? It still does.? So if you are reading this, Asher (or if your parents are), thank you.? Joshua liked the idea of playing tag with you in heaven when he will be able to run fast like his big brother.? I like the idea of one day being able to watch the two of you playing together.Thank you to everyone who has sent cards &/or birthday presents to Joshua.? He is getting excited about his birthday party in 3 days & I am really looking forward to putting together a photo album to share of his big day.1 person this Sign My Guestbook | Read Tributes Written July 28, 2011 12:11am by Kate Parker It never fails ~ if I post that Joshua is doing relatively well, he has a lousy day.? Last night was rough, with him having multiple episodes of apnea prior to going to sleep & then bradycardia almost all night long.? It got to the point that I turned off his pulse ox because the alarm kept going off despite my having the heart rate set to alarm very low.? He slept until 1:40pm today & woke with a headache.? He has complained of head pain throughout the day, but thankfully has responded to a combination of lortab & dilaudid each time (on top of his fentanyl patches, which deliver medication constantly).I had three people contact me today (one via email, one via chat on Facebook & one in person) to suggest/urge me to move Joshua's half-birthday party up to August 2nd rather than his true half-birthday date of September 2nd.? After talking with Charley, we agreed it was probably a wise move to make.? If September comes & Joshua is able & interested in having another little party, we can do that, but we would really regret waiting if that doesn't happen.? We're moving it to a week from Saturday (August 6th) on the assumption that more people can attend on a weekend than a weekday.?? Oops, I need to go take care of my boy... please continue praying for him & for our family as we immerse ourselves in making memories every day.? Please pray for many, many, MANY more GOOD days for us to do just that.? We are nowhere near ready to give him back to the Lord & it is our hope that we won't have to anytime soon.1 person this Written July 26, 2011 11:45pm by Kate Parker Joshua has had a few good days.? "Good" is now defined by him waking up prior to 2pm without a major headache or vomiting.? "Good" is when he sits up to play on his Wii & talks to us.? "Good" is when he wants to eat a mini Milky Way or drink ice water.? "Good" is when we can open the curtains in his room because the light isn't hurting his eyes.? "Good" is when he is happy to have his siblings in the room & their noise doesn't bother him ("great" is when he contributes to the noise with his laughter).? "Good" is very relative, huh?? His pain is well-managed at this point in time.? We started giving him blow-by oxygen (4 L/min) at night because his body was working so hard to keep his O2 saturation level up that he would sweat & soak his bedding, which would then interrupt his sleep (& mine, as I had to get up to change sheets or lay down fresh towels for him to lay on).? With blow-by oxygen, he doesn't have to work to keep his O2 in the mid-90's & he doesn't sweat excessively anymore, which allows his sheets to stay dry. He wakes up more rested & we are noticing that he doesn't have as many first-thing-in-the-morning headaches, too, which is wonderful.He isn't having any big apnea episodes at this time, but we're not really surprised by that.? He had apnea & bradycardia that began sporadically at the end of December & progressed to respiratory failure in the middle of April.? He had major brain surgery on April 25th that removed the pressure by his cerebellar tonsil against his brain stem & halted the apnea/bradycardia (A's & B's).? Historically, Joshua has regrown bone & scarred over from a chiari surgery in 4-6 months, so no one will be surprised if he begins having regular apnea issues in the near future, although right now his apnea & bradycardia are sporadic & often positional (such as if his head is tilted at a specific angle).? Joshua's hospice nurse has reminded us, too, that with his brain stem dysfunction, he could theoretically go into respiratory failure at any time simply because his brain stem stops working permanently.? Basically, what is anticipated is that either Joshua will have a build-up of pressure caused by scar tissue blocking the path of cerebrospinal fluid & that pressure will compress his brain stem, resulting in ever-increasing pain and A's & B's, which will eventually cause respiratory and/or heart failure, OR his intrinsically-dysfunctional brain stem will stop working suddenly & cause respiratory and/or heart failure. We are all hoping & praying that we get some warning versus having a sudden episode, but it could happen either way.Aaaannnnnndddd as I was typing this, he desatted into the 80's & his heart rate dropped into the low 50's for almost a minute.? Megan & I changed his position & reminded him to breathe & now he's fine.? Someone is always with him now, partially because he doesn't want to be alone & partially for our peace of mind, but honestly, it's unnerving every time he turns that greyish color & gets very quiet because that signals an apnea episode & we never know if this one will be "it", and being with him doesn't prevent anything from happening (just means someone is around to notice when it does).? Ugh...sigh.... when he is having a good day, it is really difficult to believe that he's on hospice & is not expected to live much longer (as long as we don't remember all the skills he's lost in the past few months & what now qualifies a day as "good"), but when he's not feeling well & stops breathing & has his heart rate drop dramatically in repeated episodes, no matter how sporadically, the reality slaps us alongside the head once more.? Okay, I need to end this on a happier note (Megan told me so).? I've started looking around for Indiana Jones lego party stuff since we are going to throw Joshua a "happy 5.5 birthday" celebration on September 2nd (the date will be moved up if his A's & B's begin increasing).? We are hoping to have it at the park that is just a half-mile from our house since everyone who knows Joshie & wants to see him will be invited & though we live on almost 1 acre, we don't have enough parking space for 20+ cars.? :)? If Joshua is having a good day, we can take him in his wheelchair & he'll be happy because like all kids, he can rally himself to do something he really wants to do, but if we need to have the party at our home, we will.? Joshua wants a pinata for his party & we've already got it figured out that if we can't do the party at the park, Adam will rig a hook on the ceiling so he can hoist the pinata above Joshua's bed & let him smack it while laying down.? Either way, my family's goal is to give our little guy a supremely-fun time.? If this will be his last birthday celebration, we want it to be memorable! ? 1 person this Sign My Guestbook | Read Tributes Written July 23, 2011 1:02am by Kate Parker Before I posted the last message here, I called Megan & Adam (my 19 & 18 year olds) in to pray with me about what I'd written & to ask God to please bless our request.? Our prayer was that God would make a way for enough money to be raised to allow Charley to take 2 weeks off from work.? I clicked "save" and hoped for the best.In the past two days, my teenagers' & my prayer was answered many times over!? Charley called his boss & arranged to begin a leave of absence beginning Sunday. When he came into the room that we've set up for Joshua (formally our family room) & told Joshie that he was not going to have to go to work for a long time & that he would be here every day, Joshua's face broke into the biggest smile & he cheered, "Yeaaaa!"? Charley wrapped his little boy in a tight embrace as I choked back tears.? The gratitude we both feel for what the online community has done for us is intense.? Without you, this leave of absence would not have been possible.To be on the receiving end of so much prayer support & financial blessing right when my family needs it the most is mind-blowing. I keep trying to think of words as I type through tears of thankfulness & I can't come up with anything that comes close to expressing what is in my heart.? I spoke with a friend who has walked this road of losing a child, herself, & she summed it up perfectly for me when she said, "You're filled with joy because of the outpouring of support & provision, but profoundly sad because of the reason you are receiving it."? That's exactly it.? I am absolutely, utterly, completely amazed by the incredible generosity of people... to have so very many people saying, "I care," brings me to tears. The words "thank you" are so insufficient for conveying just how much my family appreciates your help, but we truly do. To every single person who has blogged about Joshua & my family, shared our caringbridge link somewhere online, sent a donation to help us, prayed &/or offered words of kindness & sympathy & caring support, THANK YOU!!! God is amazing... there is no other way to put it... and I am speechless over the number of people who have joined forces to wrap my family in love and show us we are not alone as we do everything we can to prepare for the loss of our most-beloved Joshua. ? *Ephesians 3:20-21? Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be the glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.Praising God & thanking you with the utmost sincerity,Kate1 person this Sign My Guestbook | Read Tributes Written July 20, 2011 11:45pm by Kate Parker This will be a tough post for me to write because it involves humbling myself, asking for help, and opening myself to potentially being insulted by people who misunderstand my motives.? However, desperate times call for desperate measures, so here I go:My family needs financial help.? Charley needs to take a few weeks off work (via FMLA) & because we've had a very tough year already (114 days inpatient between Joshua & Bethany in the past 8 months), he has no sick leave or vacation time left, and we no longer have any financial reserves.? This time off is not a "want"; it is most definitely a "need".? For all of Joshua's life, Charley has worked a job that requires him to be gone 60+ hours per week, but provides excellent medical insurance.? He has not gone to the hospital when Joshua has had surgeries because he has had to work.? He's been a good provider for our family & has worked hard to ensure that Joshua is taken care of. Now, however, he is feeling completely overwhelmed with trying to simultaneously deal with working so many hours each week while coping with the knowledge that his son is dying.? He is emotionally distraught.? He has no down time to process any of this.? He isn't able to be here when Joshua is awake to spend time with him.? He & I have almost zero time together anymore & that is challenging our marriage at a time when we need each other the most. This afternoon, I got home from taking Bethany & Hannah to the orthotist to get casted for their AFOs & David to the orthodontist to get his retainer (he got his braces off on Monday) right before Charley left for work.? He asked if I would come talk to him for a minute while he got ready and when I sat down, he fell apart, telling me that he just can't do this anymore.? "This" being working while dealing with Joshua's decline.? He knows he can't quit & he wouldn't do that, but he is standing on the edge of a gaping hole & trying desperately to avoid falling in.? I completely understand how he's feeling ~ there are days when I feel like I can't handle anything and all I have to do is take care of the kids, not leave home to go to a job for 12 hours & pretend that everything is fine!? I understand that my husband feels he's missed out on so much of Joshua's life & he wants the chance to spend some time with his little boy before Joshua dies.? But without his income, we couldn't make it, and without a way to cover his income, he can't take a leave of absence from work.? He needs time off to regain his mental balance & to make some memories with Joshua before it's too late.? Many people have said to let them know if there is anything they can do to help.? Now I have an answer for that offer. If you want to help in a tangible way during this very difficult time, please make a donation to my paypal account (kpmomof7@ ~ if you click the "gift" tab, paypal won't take out any fees) to help us raise money so that Charley can take a short leave of absence from his job.? Through Joshua's 25 surgeries & hospitalizations & everything else he's gone through, I've never asked for help.? I have never wanted anyone to accuse me of profiting from my child's medical condition and I don't want to be accused of that now.? If the situation were not desperate, I would not be writing this post.? It is, though, so I am.? If you want to help, please send a gift through paypal.? I will be grateful beyond anything I can put into words if you do.? If you don't want to help and/or think it's terrible of me to ask for financial assistance from people online, that's fine.? My only request of you is that you keep your opinion to yourself.? I also hope you never find yourself in a situation that would make you need to rely on the kindness of strangers to get through.? It's easy to judge negatively when you haven't stood in this place, too.Thank you.Written July 20, 2011 1:22am by Kate Parker I had a meeting with our pediatrician today to talk about all things Joshua.? We agreed that it's time to transition him to hospice, so a nurse & social worker will be coming to our house on Thursday to admit him to their service.While I'm profoundly sad that we've arrived at this point, I'm at peace with our decision.? It's time to stop pushing for a "fix" for Joshua and focus, instead, on keeping him comfortable & out of pain & do whatever we can to enable him to enjoy the rest of his life, so that's what we are going to do.? 1 person this Sign My Guestbook | Read Tributes Written July 18, 2011 11:58pm by Kate ParkerThis?? Breaks my heart.? Joshua has had a horrible day.? He has had an unrelenting headache since early this morning & has been vomiting, on average, every 15-30 minutes for the past 14 hours.? Nothing we've tried giving him has helped.? We have not been able to break through the pain.? I gave him a shot (subcutaneous) of Imitrex, the last weapon in our medication arsenal, at 6pm and it didn't help like it has in the past.? He's had apnea episodes for several hours.? He recovers without assistance, but just the fact that he's having them worries me.? We've had him on a feed of pedialyte at a very slow rate (half an ounce per hour) in an attempt to keep him from getting so dehydrated that he winds up in the hospital.??? Tonight was the night that David, my almost-10 year old son who has moderate autism, "clicked" that Joshua is going to die... as in "not be here with us anymore dead"... and he sobbed and sobbed in my arms as he tried to process what that will mean. He is convinced that he will want to die after Joshua dies because how can he possibly live when Joshua isn't here, too? Yes, he said that. I tried to reassure him, saying that he will get to see Joshua again in heaven, but David was not consoled by that because, as he wailed, "But we'll have to wait for thirteen or twenty YEARS for that!" And then he agonized over his baby brother being sad because we aren't there in heaven with him and how sad is Joshua going to be when he sees he's all alone? I reassured him the best I could, telling him that since Jesus promised there was no sadness in heaven, I think that means Joshua won't be aware that we aren't there with him, and that once we each show up, he's going to be like, "Oh, there you are! Hi!" as though he'd walked into a room and saw us sitting there, but we'd never been separated. David's response? "But WE will know we're separated!" said with a fresh torrent of tears. How, I ask you, am I supposed to console my child when I have the same exact questions/fears/pain in my own heart over the same things? I tell him what I tell myself... it's about as effective with David as it is with myself (only slightly). I finally gave in and told him, "You're right; it's going to suck and it's going to be horrible and it's going to hurt worse than anything we've ever experienced before... but we're going to hold on to each other and we're going to get through it together, I promise you that." Then David told me, "That's why you are doing so much for Joshua, right?" I told him it was, and that I didn't do special things for Joshua because I loved him more, but because I know he isn't going to be here as long, so I want to make as many memories as I can. David agreed with that and then asked me, "Will you videotape him a lot so we can hear his voice and watch the videos every day when we miss him?" Yep... I already am. He told me, "I'm used to things being stressful, but I'm not used to things being sad." That sums things up perfectly, I think. So yeah... it's been a day of major emotional suckitude here. I wish I could protect my children from this pain... I wish I could MAKE God heal Joshua on earth & allow him to grow up in our family. I wish for so many things...........1 person this Sign My Guestbook | Read Tributes Written July 16, 2011 4:20pm by Kate Parker Joshua is all right, but not great.? He's no longer eating much at all, so he's now hooked up to his g-tube around the clock.? He gets formula for 17 hours & either water or pedialyte (depending on whether he has thrown up a lot or not) for 7 hours.? We're still letting him eat & drink whatever he wants, but aside from some junk food, he hasn't shown much interest as of late.I had a sad & difficult conversation with our neurosurgeon's P.A. last night.? In a nutshell, Dr. W & Jenny don't feel there's anything more they can do for Joshua, so they "officially" gave us the word that they are done treating him.? Yes, we'd been told in January by Dr. W that she didn't think she could help Joshie anymore, but when the chips were down in April, she couldn't give up on him, so she took him back to the OR once more.? We knew she was back to thinking there probably wasn't anything else she could do, but our suspicion hadn't been confirmed until yesterday.? And even though I *knew* in my gut that there'd be no more surgeries for Joshua, it was still painful to hear the words because it represented a finality that I have been trying to prepare for, but am still not completely able to accept.? Jenny was so kind & gentle while talking to me, though, and I know it was brutal for her & Dr. W to admit they have nothing left to offer because they love Joshua, too, and no one wants to believe that there's no more hope from a medical perspective.? This past week was filled with many emotional reminders of how fragile Joshua is.? Our pediatrician arranged for the director of a local pediatric hospice program to contact me ~ not to put Joshua on their service yet, but to give me information about how the program works & how things will work once Joshua is transferred from palliative care to their care.? I ordered the urn that will hold Joshua's ashes, and I met with a staff member at the mortuary that will handle Joshua's cremation & signed paperwork (authorization for cremation & other forms that will be used for his death certificate & obituary).? As gut-wrenching as it has been to take these steps, I'd rather get it arranged ahead of time because I strongly suspect that when the day comes that Joshua dies, I am going to be utterly useless to everyone & engaging my brain in rational thought will be impossible.Don't get me wrong; I'm not at all saying that I think Joshua is going to die imminently. He might, but that would surprise me. Despite his slowing down & 'wearing out' faster, Joshua is mostly stable right now. No one knows how much longer he has (exempting God from that statement, of course), but as long as he's not having apnea or other potentially-life-threatening symptoms, I am able to continue believing that he could be here to see his 6th birthday next March. Hoping & praying for that, however, does not mean we aren't going to throw a big party on September 2nd to celebrate his half-birthday, just in case.? :)I have a meeting with our pediatrician on Tuesday afternoon to discuss hospice & at what point we will move Joshua to their service. I have some half-formed opinions about that, but I want to get Dr. S's input because I trust her judgment and I know from past experience that hearing her perspective will enable me to make a better decision than I otherwise would.For all of the Legacy Emanuel staff reading this, I want to let you know that I will be at the hospital August 16-18th (Bethany & Joshua have outpatient appointments, so we'll stay at the Ronald McDonald House, as usual).? I plan to come to the pediatric unit several times ~ hitting both day & night shifts ~ in the hopes of seeing as many of Joshua's primary nurses as possible while we're in town, so if you would pass the message along to everyone on his primary card, I would appreciate it very much.? Since we are not doing any more surgeries & Joshua's care is being managed locally now, I have doubts that he'll ever be inpatient at Emanuel again.? As such, I'm hoping many of our favorite people are around so that Joshua & I can give hugs & say goodbye. You all have watched him grow up & you've been so much more to my family than "just" nurses & chaplain & child life specialist & music therapists... you're our extended family & in all honesty, I am going to miss you tremendously when I don't get to see you on a regular basis anymore.? Written July 11, 2011 2:19am by Kate Parker Joshua with his splints to protect his broken feet.Yesterday was a rough day for Joshua, but today has been better.? His oxygen saturation level kept dropping to the low 80's, but would pop back up after a few seconds without any intervention.? This wouldn't concern me except that the same thing happened back in December & then eventually progressed to full-blown apnea episodes with Joshua getting dusky-colored & needing oxygen to recover once he began breathing again.? And that progressed to our needing to stimulate him to begin breathing again & ultimately that led to him going into acute respiratory failure & having his sixth brain surgery.? And that surgery was intended to be his last, as his neurosurgeon said she was done & couldn't do anything more.? Joshua hasn't had any desats or apnea since that surgery on April 25th & I am not ready to have them start up again.Dr. S did not put Joshua into full casts today; instead, she made splints that will be held on with elastic bandages.? Splints are safer for Joshua since he has no sensation of pain in his feet & could not say if there was something hurting or pinching inside the casts.? His feet/legs will be protected from skin breakdown, as well, by using splints over full casts, since we can remove them each day to check for pressure sores.? Also, the weight of full casts could put stress on his legs & potentially cause the fracture of bigger bones (like his femurs), which would obviously be a lot worse than the fractures in his feet.? As of this afternoon, we disconnected Joshua from his IV fluids & stopped his IV meds.? He's gotten a tube feed for 12 hours & all of his medications via g-tube without any vomiting, which is very encouraging.? In addition to his fentanyl patch being increased by 25%, his dose of lortab was upped by 25%, as well, and it's Dr. S and my hope that those increases will be sufficient for controlling Joshua's pain (his neurontin & dilaudid dosages remain the same).? I am anticipating going home tomorrow as long as there are no surprises tonight (and there shouldn't be any).? This 'maintenance' hospitalization went well ~ things got done quickly & efficiently, which is how I like it.? It's nice to have everyone sharing the same goal of getting Joshua stabilized & finding the new dosages of pain meds needed so that we can go home as quickly as possible.? Everyone involved with Joshua's care understands & supports our desire to give Joshua the best quality of life possible, which doesn't really happen when he's laying in a hospital bed.? It will be nice to get home tomorrow & let him get back to doing the things he enjoys once more.1 person this Sign My Guestbook | Read Tributes Written July 8, 2011 7:01pm by Kate Parker Joshua had a rough night, with horrible head pain that left him alternately crying and throwing up. This had started a few days ago, but last night was severe. His labs drawn yesterday showed that he was dehydrated, but our ped and I had thought we could try to manage things at home. That plan didn't work so well and this morning, Joshua was admitted to our local hospital. He had a head CT to make sure this isn't a shunt problem, which it does not appear to be. He also had a chest x-ray, which was normal, and multiple x-rays of his left foot, which revealed 2 breaks. One of the breaks is older and partially healed. Dr. S will cast both feet before Joshua gets discharged, but the priority right now is getting his head pain and vomiting under control. He has gotten a bolus of fluid and is now getting a second bolus since he still has not peed. His labs showed a low glucose level, so he is getting an extra bolus of that. We have added another 12.5 mcg patch of fentanyl to help with pain, and he is also getting IV fentanyl. We'll be here for a few days getting Joshua stabilized, so anyone local who wants to come by is welcome to. I'd love some company to help pass the time. 1 person this Sign My Guestbook | Read Tributes Written July 7, 2011 11:32pm by Kate Parker Joshua's MRI was this morning. When he was just waking up in recovery, our ped, Dr. S, called my cell phone (the first of 3 conversations we had). She had already talked with the oncologist & orthopedist in Portland, who had seen the images from the scan. What they told our ped was, "This does not look like cancer; however, it is very complex."Go ahead & take one second to shout YIPPEE that it does not look like cancer! I did, but was then told by a sober Dr. S that Joshua had multiple fractures in his foot~ a total of 6 breaks. The docs in Portland said his bones are very weak due to osteopenia & the neurogenic condition of his nerves & muscles was apparent (muscle & nerve wasting due to lack of functioning). The orthopedist said the outer layer of the bones were inflamed from an infection. A bone biopsy would be needed to determine what bug(s) were growing in the bones, but the orthopedist said he could not put a needle in any of the bones without making the problem worse. As such, he & the oncologist were referring Joshua over to infectious disease to get their advice about what antibiotics would be recommended to treat the infection (6-8 weeks of IV meds). Dr. S & I talked about the need to x-ray Joshua's left foot because the odds that he has breaks in that foot are very high. We'll also x-ray his pelvis to see if he has any fractures in his hips, pelvic bones or sacrum that are causing him to have pain when he's wearing clothes or has a diaper tightened normally and we'll x-ray his chest to determine if any of his ribs are broken since that could make him feel like he can't breathe & would explain why we can't tighten his car seat straps at all (they have to be floppy on him because any pressure at all causes him pain). Basically, we have to check for the possibility that Joshua has a lot of broken bones throughout his body. Horrifying thought, but at least fractures are treatable & won't hasten his death, so even though osteomyelitis (bone infection) is nothing to blow off, both Dr. S & I were feeling almost giddy with relief that the problem wasn't cancer. Before we hung up on the first conversation, I was told to take Joshua back to the infusion clinic so they could draw labs because infectious disease wanted to know what his inflammation markers looked like. They fully expected them to be super-high in response to the massive inflammation seen on the MRI. The ped said she'd call me after talking to infectious disease & getting the information on what IV meds we'd be putting Joshua on.We got the labs drawn, then took Joshua to the neurosurgeon's office to check his shunt setting because the magnet in the MRI machine can reprogram the kind of shunt that he has. I knew the setting had gotten messed up because Joshie couldn't lift his head without horrible pain & vomiting, so I wasn't surprised to hear it had gotten reset to 0.5 (meaning it was waaaaay overdraining). The doc tried to get the shunt set back to 2.0 & the sucker would not budge! He worked at it for about 10 minutes before going to get another neurosurgeon to help him. The two of them worked on trying to get the shunt set properly for another 20+ minutes before it finally was where it was supposed to be & we were able to leave. When we got to the parking lot, I called Dr. S & asked her if she wanted me to take Joshua across the street to the peds office to have Joshua's foot casted. She told me that since the breaks have been there for awhile, waiting another day or two wouldn't hurt... she wants to be the one to take care of him, and she felt that since we'll be doing more x-rays and may have to cast both feet if his left foot is broken, too, it would be better to wait & do both at the same time. Then she told me that she'd gotten some of Joshua's labs back and the labs for inflammation markers, which should have been crazy high if there was a bone infection, were completely normal.. I asked how it was possible for Joshua to have massive inflammation around the bones of his foot without having the correlating lab values to corroborate the diagnosis of osteomyelitis and was told She said, "Once again, you are asking questions before we have the data to answer them.... I don't know, Kate. That's why I need to call infectious disease right now. I will call you after I've talked to them & with the oncologist & orthopedist again. You take that boy home & deal with fluids & pain control, and I will contact you hopefully by early evening." She was referring to Joshua's creatinine result showing that he's getting dehydrated, so she wants me to give him pedialyte continuously for at least 24 hours (so please pray he doesn't puke it all up). Also, we haven't been able to get his headache under control in the past 24 hours, so we're going to increase his fentanyl patch by 12 mcg per hour.At a bit after 6pm, Dr. S called and asked me if I could handle hearing more GOOD news! I told her that yeah, I thought I could do that. (grin)She said that the rest of Joshua's labs looked perfect, so infectious disease said that they are now convinced he does NOT have osteomyelitis. After Dr. S called infectious disease with the lab results, they got the top orthopedic radiologist in the hospital ~ a guy who has had specialized training, I was told ~ to look at the x-rays & the MRI. He said that all he saw was a bunch of fractures in a foot full of brittle bones. He said there's a bunch of edema, but the covering of the bones are NOT inflamed like the orthopedist who first evaluated the MRI had thought. He said the cortex of the bones are NOT destroyed, which is fantastic news.So what does all of this mean? It means that Joshua has brittle bones most likely caused by a combination of steroids he's taken through the years & lack of weight bearing and those two factors, mixed with his increasing size (height/weight) & lack of sensation to give feedback for pain, creates what Dr. S called "a perfect storm" for multiple broken bones. And that is what he has. Multiple broken bones. That's it. No infection. No cancer. JUST BROKEN BONES!!!!? Broken bones that will heal with time. Dr. S told me that this was a really good reminder for all of the pediatricians & the radiologist to NOT tell a family there's a diagnosis before they've done definitive tests.Oh. My. Word. To go from the emotional HELL of believing Joshua has cancer to hearing that he's got a bunch of fractures & will need casts & his walking days should probably be over (yes, Dr. S said it's probably best that we transition Joshie to being a full-time wheelchair user) elicits such relief that I feel almost dizzy. I have never been so terrified or sad as I was these past 4 days... and now, even though we know he's still terminally ill and declining, it's still a HUGE relief to know that cancer isn't what is going to take his life. We still have hope for months with Joshua instead of weeks, & having been given that time back is precious.The plan now is for Joshua to be admitted to our local hospital on Sunday at 10am so that he can be hooked up to an IV (his port is still accessed) to get a bolus of fluid because of his dehydrated status. He'll get x-rays of his chest, pelvis & left foot and then Dr. S will come over at 11:30am to put casts on his feet/legs (we're assuming his left foot is also broken). If he has fractures in his pelvis and/or ribs, those would not have any treatment other than to lay around & let them heal, which is what he's going to be doing anyway? We're planning to do this stuff on Sunday since Dr.S will be on-call & she'd like to have plenty of time to check Joshua over without any rush.Right now, Joshua is sleeping. He has only been awake for about 30 minutes total since his MRI. Dr. S told me to call her tomorrow & let her know how Joshie's status is with regards to fluid intake (he's getting 2 ounces per hour of pedialyte via g-tube) & consciousness. If he's still not waking up much and/or is waking only to vomit (which is what he's done today), then he'll probably get admitted tomorrow and stay in the hospital for a few days so we can get him stabilized again, but we're hopeful that he'll be able to keep the pedialyte down & wait for the IV fluid bolus on Sunday morning.Thank you all SO MUCH for the support & prayers you have given these past 4 days.? I hope that just as you grieved with me when we believed Joshua to have osteosarcoma, you will rejoice with me now that we have learned the problem is so much more-benign.? P.S. I have a copy of today's MRI & I will try to figure out how to extract individual pictures from the scans so that I can show you the fractures in Joshua's foot. Tomorrow, I will ask our ped's nurse if she can email me a copy of the x-ray so that I can show you all the area that was thought to be a tumor. If she can't, then I'll ask her to call the hospital & request they make a CD for me & then I'll pick it up next week. I want you all to be able to see what we were worried about.Written July 6, 2011 9:50am by Kate Parker At the beginning of May, while we were in Portland, Joshua began grasping his big toe (right foot) & saying that his toe was bugging him.? Since he has neuropathic (nerve) pain in his feet, his doctors & I thought the complaint was probably due to that.? His neurontin dose was adjusted from 5mls given 3 times per day to 4mls given 4 times per day to cover what we assumed was breakthrough discomfort.? It did seem to help for awhile.Also during that hospitalization, Joshua had a few nights of waking up with severe knee pain (right knee).? He would cry & squirm around in bed, saying his knee really, really hurt.? I would massage it & the nurse would ultimately give him a dose of fentanyl to control the pain.? That worked each time & Joshua would go back to sleep.? It happened only a few nights, but no one had any explanation for it & since it stopped, I didn't think anything of it.At the beginning of June, two days after his second occipital nerve block, Joshua began experiencing shortness of breath & the feeling that he was having trouble breathing (I know I posted about it here).? Since his oxygen saturation stayed normal, no one knew why Joshua was feeling like he couldn't breathe.? A chest x-ray was taken & that was normal.? Ultimately, it was assumed that the symptom was a side effect of the steroids that had been injected into Joshua's head and, while bothersome, was not worrisome & would eventually taper off completely (it hasn't).About a week ago, Joshua began complaining that his shorts & diaper were bugging him & that they were too tight.? I loosened them as much as possible and he would still insist they were bothering him as he tried to push them down to rest below his hipbones.? I took his shorts off & told him he didn't have to wear them at home.? As for his diaper, I hooked the tabs at the outermost edges of the velcro & that solved the issue.? I felt his belly and it seemed to be okay.? I didn't know why he was having this issue, but also didn't think it was anything serious (it still might not be... we don't know yet).Also about 10 days ago, I put Joshua's shoes on & he immediately began crying, saying his foot hurt.? I felt for his toes, thinking he might have outgrown his shoes, but he still had plenty of room.? So then I removed his brace & shoes & inspected his foot, but I didn't see or feel anything unusual.? Joshua held onto his big toe and insisted his foot hurt.? This concerned me a bit because Joshua doesn't have sensation of pain in his foot anymore, so how could he say his foot hurt?? I wondered if it was neuropathic pain, but he didn't say his foot was burning, which is his usual description for that; instead, he said that his toe was bugging him.? For the record, "bugging me" is NOT a real helpful phrase!? I asked if it hurt & he thought for a minute before answering, "Not anymore. Now it just bugs me."? I didn't really know what to think, so I made a mental note to watch his foot over the next few days & if things didn't improve, I'd take him to the pediatrician's.? In the meantime, Joshua wouldn't wear shoes.? No big deal.On Saturday night, Joshua was in the game room & I called to him to come to the living room so I could change his diaper & give him his meds.? He hollered back that he couldn't walk.? I went to him & asked why he couldn't walk and he answered, "Because my foot hurts when I walk."? That was a red flag moment for me.? I looked at his foot & was surprised to see that it was swollen.? His toes were not puffy, but his midfoot had a swollen area on both the top & underside of his foot.? At that moment, I wondered if Joshua had somehow broken his foot.? I picked him up and carried him to the living room, took care of his diaper & meds, then cuddled with him on my lap in the recliner.? In that position, with his foot relaxed, his big toe was flexed upward, which I thought was odd.? I wondered if maybe he'd hurt a tendon & it was pulling his toe backward.? I decided I'd call the pediatrician's office the following day to see if they could get Joshua an x-ray & see him in clinic so we could be spared an hours-long ER visit.On Sunday morning, I called the ped's office & explained the situation to the woman taking messages for the answering service.? She told me the nurse would be in at 9am and would call me.? The nurse called & we arranged a time for Joshua to come in at 12:10pm (clinic opened at noon) and also to get an x-ray prior to his appointment.? Since it was Charley & my 20th anniversary and we'd planned to take the kids to the river as part of our 4th of July celebration (we had to break up our activities into two days since Joshua doesn't have enough energy to do a full day of stuff and we wanted to ensure he had a good time), it was my goal to get the x-ray & appointment completed as soon as possible so that we could enjoy the afternoon.At the hospital, when the x-ray was taken, I was standing beside the tech to avoid radiation (Joshua had asked for Adam to stand beside him while the pictures were being taken), so I saw the images as they were shot.? After the first film popped up on the screen, I pointed at a white blob that was between the first & second bones of Joshua's foot and asked, "What is that?"? The tech was vague & said something about how occasionally you can see small bones in a child's foot & then went on to motion to other bones in Joshua's midfoot & say, "You see how these aren't connected yet?? That's because children's bones aren't fully developed."? Yeah, I knew that.? But that didn't answer my question about what was between the bones of my child's foot that I knew did not belong there.? I also knew the tech could not answer my question, so I didn't press the issue.? I just stood quietly & watched the other films as they showed up on the screen, giving different views of that thing... whatever it was... that wasn't supposed to be there.? Just before we left, the tech asked, "How long has his toe been pulled up that way?? I told her we'd noticed it the night before.? "Okay," she replied, then asked, "You're going over to see the doctor right now, correct?"? I confirmed that we were & then another tech offered to walk us out so the main tech could call radiology.? At that point, I wasn't worried because I didn't know what I'd been looking at. At the ped's office, the nurse practitioner came in & announced that there were no obvious fractures in Joshua's foot, but there was something more worrisome.? Before she could go on, a nurse popped her head in the door & quietly said, "The radiologist is on the phone."? The NP sighed, said, "okay, good," and then told us she'd be right back.? When she returned, she said she did not want to scare me, but she had concerning news.? I interrupted her by standing up as I was very quietly saying, "Okay, then we need to go talk elsewhere."? I then raised my voice to normal level & said, "Joshie, I'll be right back, okay?? You just hang with Adam for a minute."? Then the NP & I stepped out of the room.? I apologized for interrupting her, explaining that we no longer discuss scary things in front of Joshua because he is starting to pick up on the conversations & I don't want him to be worried.? There was something about her demeanor that had me feeling sick inside as I wondered what horrible news she was going to deliver.? When she gently suggested we go to a different room rather than stand in the hallway to talk, I knew this wasn't going to be good.I sat in a chair and the NP leaned against an exam table while she explained that there was a growth in Joshua's foot.? I told her I'd seen it but hadn't known what it was.? She nodded & went on, saying that the radiologist had said it was a couple of months old and that he believed it to be an osteosarcoma.? All the air got sucked out of my lungs & I choked out, "Bone cancer?"? When she nodded, I shook my head & exclaimed, "You have GOT to be kidding me!? He's already considered terminal!? What?? Was the brain stem stuff not going to kill him fast enough?"? Then I sat back heavily in the chair & was silent for a bit.? The NP explained what the radiologist had told her and then said we needed to get an MRI sooner than later.? She asked me if there were any other symptoms that I could think of... things that maybe didn't seem important but were odd... and I remembered Joshua complaining of his toe bugging him when we were in Portland... and his knee pain... and his diaper/shorts thing... and his "I'm having trouble breathing," complaints.... I shared all of it with the NP and she solemnly told me she had called the ped on-call (Dr. C) and he was on his way in to talk to me.? Then she told me how very sorry she was and asked if there was anything she could do for me while we waited for Dr. C to arrive.? I asked if she would please show Adam the tumor because he has Asperger's & would need to see a visual.? She agreed & went to get her computer while I went back to the exam room where my boys were.? As soon as I walked in, Adam came to me (Joshua was playing on Adam's iTouch & was oblivious, thankfully) and half-stated, half-asked, "It's bad, isn't it?"? I nodded, unable to find the words that I knew would shatter my oldest son.? He asked, "What is it, Mom?"? "A tumor," I quietly choked out.? "What?!"? Adam was stunned.? He pulled me into a hug & asked, "Does he have cancer?"? I nodded and answered, "That's what the radiologist said."? Then I began crying. The NP walked in, saw Adam & me hugging & weeping, and hugged us both.? After a few minutes had passed, we composed ourselves and the NP showed Adam the films, pointing out the concerning area of growth without saying anything that would be scary for Joshua to hear if he had been listening.? For Adam, seeing the tumor was helpful because it stopped him from imagining a reality that was much worse than it was (which is why I asked the NP to show him the x-rays).? Right after we finished up, Dr. C came in and, after greeting Adam & Joshua, invited me to join him in another room to talk.We settled ourselves in chairs in the ped's private office and he discussed with me the radiologist's findings, what it meant & where do we go from here.? We rapidly agreed that pursuing aggressive chemotherapy was not what we wanted to do.? From the doctor's perspective, Joshua might not survive chemo due to his weakened state, and from both of our perspectives, we saw no benefit in putting Joshua through chemo.? I told him that if this were one of my healthy kids, like Isaac or Adam, I would want to do everything possible & I'd want to do it immediately.? He agreed.? We both agreed that since this was Joshua we were talking about, and he already had a condition that was expected to shorten his life, and he was already on palliative care, and the goal was to give him quality of life, chemo just did not fit in to that goal, nor would it be beneficial in the long-term.? Even if he managed to tolerate the drugs & the cancer was put into remission, he would still have the brain stem dysfunction & he would still have scar tissue overgrowing in his brain & he would still experience the consequences of increased pressure eventually causing respiratory failure.? So... why put him through chemo and wreck the good days that he still had?? We also talked about amputation, as Dr. C explained that if the cancer had not metastasized, it was probably going to be suggested as the primary treatment option.? He said that if this were a different child, he would admit the kid & transfer him to Portland to get an MRI immediately, but with it being Joshua, he thought we could take a few days to get things done.? I told him I was not putting Joshua in the hospital over the 4th of July.? This will be his last one, he loves fireworks, and we had plans for a fun two days.? I didn't think waiting an extra two days would make or break anything for Joshua's ultimate outcome and Dr. C agreed.? He told me to go, have a wonderful two days with Joshua, and we'd get the MRI & PET scans done later in the week.? Then he hugged me, told me how sorry he was (for about the 10th time) and walked me out to the front of the office so he could get the secretary to schedule Joshua with our regular pediatrician on Tuesday.? After getting the appointment secured, Dr. C turned to me and said, "If you have any questions or think of anything you need to talk about, call the office & have the answering service direct-page me."? I said okay, then hesitated and told him, "But they won't page you.? They'll tell me I need to talk to the triage nurse and if she thinks a doctor needs to be involved, she'll page the ped who is on-call."? He looked me in the eye & said, "Tell them your son has cancer & that I told them to direct-page me.? They'll do it."? Okey dokey then!? We hugged one more time and then he turned to go.? I did the same, going back to the exam room to get my boys so we could go home.When we got in the van, Adam quietly asked, "What's the fastest route to Toys R Us?"? I told him & he drove there, his jaw solidly set & his eyes refusing to spill the tears that filled them.? At the toy store, he took Joshua in his arms & walked straight to the Lego aisle to buy his baby brother, his best friend, a new Lego set.? No, it didn't make things all better, but Adam wanted to do it & I wasn't about to tell him no.? Joshua, who had no idea what was going on, was happy to have new Legos, and that was all that mattered to Adam at that moment.Once we got home, I had the horrific task of telling my husband that our son has cancer.? Charley then told Megan and together, he & I told Emily.? We agreed that we weren't going to say anything to David, Sarah & Isaac until after all the testing is done & we've spoken with the oncologist and know what the plan is.? We all sobbed and prayed and cried some more, and then we dried our tears & loaded the car to go to the river.? None of us wanted to go, but we'd promised the little kids and they were very excited about the trip, so we went, and while it was more sedate than usual due to our sadness, the kids had fun & Joshua enjoyed himself... and seeing him happy reminded all of us that he's still here, and while this is completely, heart-breakingly devastating to us all, we need to live & make memories & enjoy every day that we have with Joshua to the fullest extent possible.? I read a quote by someone that said something to the effect that on your worst day, at the worst moment of your life, remember what you know about God & hold on to it.? On Sunday, I remembered that God is good & He is working out a plan according to His purpose, and that plan is for good.? Even when I don't FEEL it.? Even when I don't SEE it.? Even when I don't understand one iota of what is going on and I cannot fathom WHY He who loves Joshua even more than I do would allow this horrible thing to happen, that doesn't change the truth that there IS a plan being enacted here.? I can't see the whole picture.? Only God can.? What I see is 1 piece in a 100,000,000,000-piece puzzle... I can't possibly see how my life or my child's life or my friend's life fits into that puzzle, but one day, when I stand beside Jesus in heaven, I will.? The day WILL come when I look at that ginormous puzzle and am able to say, "Ohhhh.... I understand now!"? It doesn't make the pain of what we're experiencing any less intense, but having the hope that comes from knowing the Lord & His promises brings me comfort in a way that nothing else can.? That said, I still don't want to have to go through this.? I don't want Joshua to have to go through it.? I have cried buckets of tears in the past two days.? I have pleaded with God & begged Him to heal my child completely.? I have yelled at Joshua's foot, telling that tumor it has no right to be there and to dissolve away & get the hell out of my son's foot in Jesus' name.? I am appalled at the idea of cells growing out of control in my child's body and I am angry that it is happening.? I feel helpless & my heart is torn to pieces as I watch all of my children suffer.? I HATE this!? I HATE seeing them hurt and not being able to protect them from the pain.? All I can do is hold my kids and pray with them and assure them that we will get through this.? It's all I can do, and it's not nearly enough.Joshua will have an MRI tomorrow & then the hematologist-oncologist (hem-onc) and orthopedist in Portland will evaluate the results.? They've got the x-rays & have been in contact with our pediatrician.? The plan as of today is to do the MRI & then we'll head north to Emanuel next week for more scans, a biopsy & discussions with the doctors there to determine what we're going to do.As always, thank you for praying for Joshua & my family.? I will continue to update as we learn new information. 1 person this Sign My Guestbook | Read Tributes Written July 3, 2011 10:58pm by Kate Parker Today, on Charley & my 20th anniversary, we found out that Joshua has bone cancer.? I took him to the ped's with what I thought might be a broken foot & the x-rays showed a tumor that I was told is osteosarcoma.? He will be having an MRI & a PET scan in a few days & we may have to go to Portland depending on whether or not the cancer has metastasized.? Tumors are associated with the chromosome 2 duplication that Joshua has.? We will not pursue aggressive treatment (chemotherapy/amputation) because even if we could get him into remission from cancer, we still can't treat or cure his brain stem dysfunction.? We decided in April that we were going for quality of life over quantity & that hasn't changed. As of right now, we plan to keep him comfortable and as pain-free as possible (just like we've been doing). IF we learn different information from the oncologist, our plans may change.I know people will want more of the back-story about Joshua's foot & why I had thought it might be broken, and I will write about that in my next update.? Most of this post is a copy-&-paste from my facebook page & I just do not have it in me to write any more tonight. Please pray for Joshua.? Right now I don't know what else to say.1 person this Sign My Guestbook | Read Tributes Written July 2, 2011 2:06am by Kate Parker Joshua is now unable to sit up at the table for an entire meal.? He has taken to pushing two chairs together so that he can sit on one chair, take two bites of food, then lay down on his side, with his head & torso on the second chair, to rest for a few minutes before sitting up again to take a couple more bites, then again lay down to rest.? He's doing the same thing when playing the Wii ~ he'll be upright for a bit, then need to lay down to rest (he'll continue playing even while laying on his side, though, LOL).? I think this is why he doesn't want to go anywhere ~ being upright for very long is too hard on his body.? I'm not sure why that is, exactly, but it definitely seems to be what is happening.? He has more 'gasping for breath' episodes while upright, too, though his O2 has dipped below 90% only twice in the past month & it didn't stay low for more than 5 seconds.? Maybe he's experiencing more sagging of his cerebellum when he's upright & the effect of gravity pulls down on his brain, causing a partial blockage of CSF or pressure against his brain stem (or something... I'm totally shooting in the dark right now) & that's why he feels better when he's laying down.? <shrug>? I don't know.? I guess it doesn't really matter that much, either, since knowing what's going on isn't going to change a darn thing.... I just like having answers to my questions, that's all.I decided a few weeks ago that I was not going to try to keep up with all of our regular therapy appointments for the kids for the rest of the summer.? What our family wants to do is just spend time together, keep things low-key & as relaxed as possible, and enjoy the time we have with Joshua.? Since we have absolutely no idea how long God plans to let us keep him here with us, we don't want to be spending our days running from one appointment to another.? I don't want to be gone from Joshua for 5-7 hours a couple days each week while I take his siblings to occupational & physical & speech therapy.? Yes, it's important for the other kids to have regular therapy, but Charley & I feel it's more important for them to make lots of memories with their brother this summer, so that's our focus.? Considering how Joshua is slowing down as time goes on, I am convinced we're doing the right thing................... I just wish with all of my heart that he wasn't slowing down.? I wish he was rambunctious like healthy 5 year old boys are & I wish I had to sigh in exasperation when I saw him tracking dirt into the house after a busy afternoon of swimming & playing outside with his siblings.? I wish I didn't have to feel my heart constrict when I'm reminded each day that things are moving in the wrong direction.? If only love could heal my son.... if only that were all it took.? I wish each of you reading these words could KNOW Joshua... I wish you could spend a day with him & share in his enthusiasm for SpongeBob & Mario Kart & Lego Indiana Jones and Lego Rock Band.? I wish you could hear him laugh & sing.? I wish you could feel his arms hugging you tightly around your neck.? I wish you could know Joshua the way I do, because then you would understand just how heart-crushing it is to watch him slowly fading into a shell of the child he was.? Oh yes, I'm thankful he's still here & if he could stabilize where he's currently at for the next year or 5 or 30, I'd be fine with lots of naps & laying down to rest. No complaints whatsoever! However, it's still sad to look back at pictures & video from not that long ago & to see just how much things have changed.? That is what is hard for me to face, because I don't want to let my little boy go.? I don't care that God loves him more than I do.? I don't care that he'll be whole & healthy & won't feel any pain anymore. I don't care that, from his point of view, it will be just a blink of the eye before we're together again ~ that he won't be aware that we've been separated by death.? Well.... okay, I DO care about all of those things.... but what I mean is that while it's wonderful (seriously) that God loves Joshua so tremendously & that in heaven he won't hurt or feel sad & that he'll never be scared because he won't know that we're apart, I WILL know & it tears me to pieces to think about having to live the rest of my life without my Joshua physically a part of it.? I don't want him to die & I definitely don't want it to be anytime soon.? Having new developments such as his needing to lay down multiple times to get through a meal reminds me that this is utterly out of my control & it scares me because I wonder if time is growing short & I desperately don't want that to be true.? I still trust that God is good & everything that is happening with Joshua is being allowed by Him for a purpose, but I'd be lying if I said I was okay with any of it.?Written June 25, 2011 3:43pm by Kate Parker Anyone who has read this caringbridge page for awhile probably has realized there are times that I write some tidbits that may not interest anyone else, but I jot them down because this page is a historical record for me about Joshua's medical journey.? As such, when something new happens, I tend to make mention of it so that I can go back & say, "Okay, that's when xyz started."? Basically, by writing it down, I don't have to consciously remember dates, and when I have a doctor ask me, "How long has xyz been occurring," I can look back through the pages here & find the answer.? Anyhow...Joshua's stamina has definitely decreased.? His tolerance for activity is much lower.? If he plays with the Wii for a long time, he wears himself out & will fall asleep in one of the gaming chairs in the room.? When I took him out yesterday, we were gone for 6 hours (doctor appointment, bank, Burger King for lunch, grocery shopping, picking up prescriptions at two pharmacies, bread outlet store, plus a 45-minute drive each way).? The doctor appointment was our first stop & he was tired afterward & asked if we could go home.? At the bank, he stayed in the van (I had Adam with me to enable this), and we went through the drive-thru at BK.? He rode in his wheelchair in the grocery store & I pushed him the entire time.? He stayed in the van at the pharmacies & was carried by his big brother in the bread store.? So, basically, very little energy was required (his feet never hit the ground in those 6 hours), yet he was completely & utterly wiped out, exhausted, by the day's events.? That's become his norm.? A few days ago, the weather had cooled off from the low 90's to 72 degrees & it was perfect for going to the park.? Joshua was in a great mood, feeling really good, so I asked if he wanted to go to the park.? He hugged me & answered, "No.? It will make me too tired."? He has begun self-limiting activities that he knows will tire him excessively.? He prefers to stay home, where he can recline in a gaming chair while playing on his Wii or cuddle (he calls it "cuggle-wean" ~ cuddling) with a sibling or parent while watching a movie.? He's also sleeping more.? Today, for example, he did not get up until 11:10 am.? On average, he sleeps about 11 hours at night & often takes a nap (ranging from 1-3 hours) in the afternoon.? He's happy & still has great pain control, so he's enjoying his life.? We're just seeing him wear out faster & I needed to mention it here because I'm pretty sure the day will come when I will want to remember when we first realized that even though Joshua was not having a bunch of negative symptoms, he was still showing obvious signs that he was declining.? 1 person this Sign My Guestbook | Read Tributes Written June 18, 2011 12:00am by Kate Parker Ahhhh.... that's me breathing a sigh of relief at being home again after a week up in Portland for outpatient appointments & procedures with Bethany & Joshua.? Most of our trip was centered around Bethany, as Joshua had just one appointment ~ with his gastroenterologist ~ this morning.? The great news is that because he is eating well these days, he is off TPN for now!? It's thought that he'll probably need to be on it again in the future, but I am hoping & praying that day won't come for a very, very, very long time.?? For now, I'll be enjoying having a little boy who is eating by mouth rather than an IV, & we'll be spending a lot of time swimming, playing in the sprinkler & having water gun wars.? Now that he can get wet again without having to worry about keeping his port dry, we are going to take FULL advantage of it!? I do have to give him 480 ml of water each day through his g-tube, but that's totally doable ~ he gets hooked up for 5.5 hours at night & that's it.Praising God for the lovely respite from TPN for however long it lasts!!!!!Joshua is having daily headaches that require doses of Lortab & occasionally Dilaudid, as well, but he hasn't yet needed to use anything more than that, so I'm happy.? I am thankful for each day that is filled with more smiles & laughter than tears, and as of late, we're having many of those with Joshie, which is a gift no one in my family is taking for granted.? He still experiences shortness of breath, but the episodes are becoming more & more infrequent, which has convinced me that it was a side effect from the steroid used in the nerve block.? I don't know if we'll do more nerve blocks in the future or not, but I'm canceling the one that is scheduled for next week (the 23rd) since it's not necessary at this time (thank you, God!). Overall, Joshua is good.? Yes, he's lost a lot of function, his walking is slow & his gait is awkward, and his speech is difficult to understand, but honestly, I think this is as good as he can possibly get at this stage of things, and I truly am happy that he's doing as well as he is. ? :) 1 person this Sign My Guestbook | Read Tributes Written June 11, 2011 7:38pm by Kate Parker Today was a very special day ~ Make A Wish granted Joshua's wish by giving him a game room!? The original plan had been to send our family to Give Kids The World in Florida, but when Joshua was admitted to the hospital just 8 days after being discharged from Portland, his doctors deemed him not stable enough to fly across the country.? It was just as well, since the trip was supposed to take place June 1st - 7th & Joshua was in the hospital until June 5th.? Once we knew Joshua couldn't go to Florida, we thought about what he could still do & what he really enjoyed and came up with an alternate wish for him.At noon today, I took Adam, David, Sarah, Isaac & Joshua out for two hours so that the Wish Granters (Amanda & Michael) could come in & set up a 42" flat screen television, DVD player, Wii with 4 controllers, drums & guitar (for the Lego Rock Band game) & 4 gaming chairs in what is now our game room (was the kids' computer/play room).? When we came home at 2pm, there were bunches of "Make A Wish" helium balloons at the end of our driveway & on our porch, welcoming Joshua and everyone who came to his party to celebrate his wish.? He was happy to see his Grandma & Grandpa, our pastor & his wife, his beloved physical therapist & occupational therapist, one of his honorary Aunts & her son, the fabulous Wish Granters & our family, but his attention was primarily focused on the large pile of gifts sitting in the corner of our living room (we kept him from the game room until he'd opened the presents).? :)? He had a blast tearing into the gifts, opening each one & periodically asking, "Why am I getting all of this Wii stuff?? We don't have a Wii!"? After he'd opened the last gift, the Wish Granters led Joshua into the game room, where he saw the huge tv & the Wii and immediately hustled out of the room to go retrieve all of the Wii games & other paraphernalia he'd just opened.? Once he returned, he couldn't contain his excitement & was basically bouncing around, laughing & saying, "Ya hoo!? We have a Wii!"? He's been in there ever since, taking only a short break to blow out the candles on his SpongeBob cake (we sang, "Happy Make A Wish Day to you," instead of "Happy Birthday) & eat a little of the dessert (with ice cream, of course).? It was a magical day for our family.? To see Joshua SO happy & having SO much fun as he was surrounded by people who love him & have been an important part of his life... well... I don't have words to tell you how good it felt, but it really was special.? No, it wasn't a week-long trip to Florida, but in the end, I think this wish is even better, because playing games & watching movies are two activities that Joshua does every day & both make him happy.? He will be able to spend time interacting with his siblings & memories will be made for so much longer than just one week, which completely warms my heart.Written June 5, 2011 11:46pm by Kate Parker The past two days have been interesting.? Once the steroid portion of the nerve block began working effectively, Joshua started complaining that he was having trouble breathing.? It was the oddest thing ~ he'd gasp for breath, yet his oxygen saturation would remain in a normal range.? He also had itching & yesterday afternoon he had an hour-long steroid meltdown.? Ultimately, after some research revealed that itching, shortness of breath & mood swings were all potential side effects of the steroid used, we decided that was probably the culprit & since it should wear off eventually & there's really nothing we can do to reverse the effect, I was able to convince the doctor to discharge Joshua today so that we could go home & surprise my daughter on her birthday.So... we are home, we are happy, & we are praying that Joshua stays outpatient for a really long time!? 1 person this Sign My Guestbook | Read Tributes Written June 2, 2011 5:52pm by Kate Parker Joshua had another occipital nerve block done this morning & he is feeling really good right now ~ the absence of pain is a wonderful thing!He is adjusted to his increased dose of fentanyl, which began helping yesterday.? He also got one dose of Imitrex yesterday, which completely snowed him for 5 hours, so his next dose will be smaller.? It did work to help stop the headache & nausea he was having, so we know it's worthwhile to continue trying to find the appropriate amount he needs.? The other medication we're using is fentanyl on a stick.? It looks & tastes like a lollipop, but it's 100 mcg of fentanyl that gets quickly absorbed through the mucosal tissue in the mouth, bringing fast relief of pain.It is everyone's goal to keep Joshua comfortable & have a game plan upon discharge that will enable us to control Joshua's pain better when the nerve block wears off so that we can (hopefully) avoid another week like last week.? I'm on-board with that goal & am happy that everyone on Joshua's team is on the same page & working together.? While I wish we hadn't needed to come up here again, things have moved forward quickly toward getting Joshua stable enough to get discharged & that's something I'm thankful for.1 person this Sign My Guestbook | Read Tributes Written May 31, 2011 9:34pm by Kate Parker I had a meeting with the ped, pain management doc, our nurse & followed up with the palliative care doc. In a nutshell, Joshua's fentanyl patch is being doubled again & he'll be weaned off the PCA pump, he'll have another nerve block procedure tomorrow or Thursday, & he'll start a new medication if it can be approved by pharmacy for sub-Q administration (shots) for a kid his age/size.? There will be a small care conference with the pain management doc & palliative care doc & pediatrician prior to Joshua being discharged in order to hammer out a plan B for us to take home with us so that our local pediatrician has an idea what to do the next time we need to increase his meds again.? The goal is to try and make sure the misery that Joshua endured this past week does not occur again ~ we need to get on top of his pain quickly rather than having to play "catch up".1 person this Written May 29, 2011 11:58am by Kate Parker Joshua had a good night compared to the past few.? He'd wake up & fuss that his head hurt, I'd remind him to push his button (for fentanyl) & then we'd both go back to sleep.? He didn't throw up at all, so I never had to fully wake up, which meant I woke up feeling much more human (something that was very needed, as I'd been feeling completely wiped out).What woke us this morning was an ultrasound tech, who had come in to scan the area around Joshua's shunt to make sure it's positioned properly & doesn't have anything obviously wrong with it. His head pain is much more controlled than it's been, but he still can't sit up without hurting and he throws up even the tiniest amounts of medication given through his g-tube, which is making it difficult to get some of his regular meds into him.? Overall, however, things are moving in the right direction, which is encouraging.? I don't know that much will happen today or tomorrow since it's a holiday, but if anything does come up, I'll update to let you know.1 person this Sign My Guestbook | Read Tributes Written May 28, 2011 8:25pm by Kate Parker Hello from Portland. We're safely here after a sometimes-bumpy flight and I am feeling greatly relieved to be back where the doctors & nurses know Joshua & are good at taking care of him.? The flight team that came from Emanuel to get Joshua was not happy to see him suffering with so much pain, so they were very liberal with doses of fentanyl all the way up to Portland (he got 100 mcg in an hour).? They told me, "He deserves to not hurt."? I could have hugged the guys.? Seriously.? And the result of all that fentanyl?? Joshua is now laying comfortably in bed, has eaten some Scooby Doo graham crackers & drank some Coke (without any vomiting), and while he says his head still hurts, it's nowhere near the level of pain he's been experiencing the past 36 hours.? For that, I am so thankful.? It's amazing what good pain control can do.The ped here is putting Joshua on a fentanyl PCA pump for pain control.? We'll see Joshua's doctors as the days go by... I don't know who we will actually get to see since it's a holiday weekend, but as long as he's not hurting, I don't mind waiting an extra day or two.1 person this Sign My Guestbook | Read Tributes Written May 28, 2011 3:10pm by Kate Parker Joshua is going to be flown to Portland.? Neurosurgery will check the setting on his shunt & ensure it's where it needs to be & there's no issue with it, and palliative care will address pain.? I'm praying we're there for just a short time and that we come home with a happier Joshua who will be stable for a decent length of time (ie: more than 8 days).Written May 28, 2011 12:38am by Kate Parker Joshua is in the hospital again.? He was fine when he first woke up, but began complaining of a severe headache soon after getting out of bed.? I gave him lortab but it didn't help, so after a few hours, I gave him dilaudid.? An hour later, he was still crying with pain, so I called the pediatrician to ask her what to do.? Her nurse tried calling the pain management doc & found out he was gone for the holiday weekend, so then I called the palliative care doctor & got his voicemail.? I didn't want to have to wait to get Joshua help, so I called the child life specialist who has always been so wonderful to us (she gave me her card) and asked her if she could help because I knew she had the palliative care doc's direct number.? She was happy to help & she got ahold of Dr. T right away.? He then called the pediatrician and recommended giving Joshua 50% more dilaudid, which I did.? Within an hour of giving the extra dose of pain medication, Joshua fell asleep.? That was around 2pm.? He has been sleeping ever since, waking only to vomit or to cry that his head hurts "really, really bad."? As soon as we try to move him, he throws up.? The ped said to bring Joshua to the hospital for a CT scan to check for shunt failure, so that's what we did.? The scan looked the same as a scan done in April, so everyone breathed a sigh? of relief that it wasn't a critical, life-threatening emergency.? Joshua got admitted and right now, the plan is to keep him here tonight & then talk to doctors in Portland tomorrow to see if they want him flown up there or not.? We don't know yet if this is a pain issue or if there is something else going on, but hopefully it'll all get figured out soon.1 person this Sign My Guestbook | Read Tributes Written May 25, 2011 2:39pm by Kate Parker Joshua was discharged mid-morning and we are now home.? He still has headaches, but they're not excruciating like they were on Monday, so we're going to manage with the increased fentanyl patches along with neurontin, lortab & dilaudid.? If the ped hears from the pain management doctor, maybe something in the plan will change.? We'll see, but I'm not really worried about it either way.? We're home and that's what's important to me right now.Joshua wants me to take him to the Dollar Tree to buy something with his money, so that's where we're going (along with a few of his siblings).? I'm learning to do things when he feels good enough to do 'em (because an hour from now may be more convenient for me, but by then he may feel too punky to leave the house), so bye for now!1 person this Sign My Guestbook | Read Tributes Written May 25, 2011 1:15am by Kate Parker Pain management doctor never returned any of the pediatrician's pages, so we're just continuing on with the status quo down here.? His pain is controlled for the most part, so I don't know if anything is going to be changed or not.? It would be nice if the doctor who is in charge of running the show with regards to pain control would take the time to return another doctor's repeated calls, but I can't say I'm surprised since the staff at Emanuel had trouble getting ahold of Dr. R while we were up there, too.? It's frustrating, though, when I've got a little boy who's hurting and no one down here knows what to do.Sigh.? Hopefully we'll hear from Dr. R tomorrow.? I'm also hoping we'll get out of here tomorrow.? If nothing more is going to be changed with regards to Joshua's medications, then I don't want to be stuck in a hospital anymore.Written May 24, 2011 6:47pm by Kate Parker We're here for another day.? Joshua has tolerated the increase in fentanyl without a hitch (such a contrast to how snowed he was a couple weeks ago in the hospital, when he slept for 24 hours & wasn't responsive to noxious stimuli on the same dose... shows how his body has gotten used to the medication), but he's still having intermittent severe headaches & nausea/vomiting.? I'm waiting to hear from the pediatrician to learn what the pain management doctor recommended as the next step.? 1 person this Sign My Guestbook | Read Tributes Written May 23, 2011 9:54pm by Kate Parker Joshua is in the local hospital, hopefully for just one day.? Yesterday there was a mishap & his port needle got yanked out of his chest, resulting in a 4.5 hour ER visit where the nurses could access his port, but could not get blood from it, nor could they flush it with saline.? They finally gave up, took an x-ray to check the placement of the port & determined that it was "at an unusual angle".? They also thought the catheter had been clotted with TPN (which had been running when the needle got pulled out), so the final determination was that the nurses at the infusion clinic would be the people to deal with the situation & since Joshua had an appointment scheduled for today, they could figure it out.? As a result, Joshua did not get his TPN last night.? This morning, he woke with a horrific headache. I gave him his medications and then we had to head out to the doctors'.? When we arrived at the doctor's office, he threw up.? Violently & repeatedly.? This began the pattern for the bulk of the day.? His head would hurt, so I'd try to give him medication, but no matter how tiny the amount of fluid I used to get the meds into him, he would keep it down for less than 5 minutes before it came back up.? Throwing up made his head hurt worse, which perpetuated the cycle.? It was horrible & he was miserable.The nurse at the hospital infusion clinic was able to access Joshua's port & get it to both flush & draw blood without having to use anything to break up a (nonexistent) clot.? Since we moved Joshua's port back into the proper position under his skin, it has worked perfectly again.? I'm so thankful for that because I was seriously concerned that we might have to make an unplanned trip to Portland to get it fixed.? Having it work without any further issue after the difficulties last night was a definite answer to prayer.? After we got his port hooked up again, we headed across the street to the ped's office.The pediatrician called Dr. R, the pain management specialist in Portland, and he laid out a plan to get Joshua's pain under control again & (hopefully) stop the vomiting.? That's how we landed here this afternoon.? The plan was to bolus Joshua with saline until I went home & brought back his TPN, at which point we stopped the fluid & hooked him up to the TPN.? He's getting IV Dilaudid & his fentanyl patch was switched out for a new one with a stronger dose.? It takes 12 hours to get the full effect of the fentanyl, so Joshua will be kept inpatient for observation (while also getting rehydrated & fed) to ensure that he doesn't have any respiratory issues & that the new dose doesn't totally "snow" him (ie: keep him too sleepy to interact with people & enjoy life).? I'm anticipating that we'll be here just until tomorrow afternoon, which is, of course, assuming nothing unexpected pops up.For those friends who have asked how you can pray for us, my request is that you'd pray for endurance, strength, peace in the midst of the storms, and for the Lord to protect the hearts of Megan, Adam, Emily, David, Sarah, Isaac, Bethany & Hannah throughout the coming days.? This is all so difficult for them & it breaks my heart that I can't shield them from the hurt of seeing their baby brother suffer.1 person this Sign My Guestbook | Read Tributes Written May 21, 2011 6:46pm by Kate Parker It's been a busy week.? On Thursday morning, Joshua woke up with moisture under his port dressing.? I could see where a part of it had come up and I knew the condensation making droplets of water under the dressing meant the day would hold a dressing change.? I called the home health nurse & told her what I was seeing and her response blew me away:? "Oh, that's not a concern.? Don't worry about it."? WHAT?!?? She went on to explain that "once the port is accessed ~ once the needle has penetrated the skin ~ there's no need to worry about infection because there's really no risk of it.? Now, if it were a PICC line, that would be different."? I about dropped my jaw on the floor, but instead, I politely disagreed with Tamara, telling her that I didn't intend any disrespect, but when Joshua has been accessed in the hospital, the IV nurses come in every day to check the dressing because any breach in it substantially increases the risk of infection.? Her response?? "Oh, well, they're just overly cautious in the hospital, but it's really not necessary."? Um... yeah.? Okay then.? Realizing that there was no use trying to reason with the unreasonable (apparently she's never actually read about the rate of infection with ports), I hung up with her & called our pediatrician's nurse, who confirmed that yes, moisture under the port dressing was a problem that needed to be dealt with right away.? Since Joshua had an appointment scheduled for 11:45am, the nurse told me she would contact the infusion clinic at the local hospital to see if they would take care of Joshua's port for us.I was feeling quite stressed.? After all, this was the second incident we'd had with the port in just 5 days after getting out of the hospital and I don't want Joshua to get an infection in his central line! After the pediatrician's nurse made a few calls to make sure everyone knew what was going on, our gastroenterologist's nurse called me to let me know that Dr. F was so angry with Coram's inability to provide a competent nurse to properly take care of a medically-fragile child that she "fired" them & was transferring Joshua's infusion care to a different company (Options Care).? As a result, Joshua will no longer have a home health care nurse; instead, he will go to the infusion clinic at the hospital each week to get his port dressing & the needle changed.? I have to admit, I was relieved by the change.? After the conversation with Tamara, I felt unsure that she knew what she was doing, and when it comes to Joshua's central line, I want someone who is highly capable taking care of him.? I cannot believe she did not think that moisture under the dressing that came from a breach in the dressing, itself, was a reason for concern.? Bacteria thrive in warm, wet environments, and a central line goes directly into the bloodstream & to Joshua's heart.? Messing around with it isn't something I'm willing to do, thankyouverymuch.? The hospital infusion nurses have been doing monthly flushes of Joshua's port since he got it in July, 2008 and the nurses at Emanuel have taken care of it when he's accessed inpatient.? Between them, Joshua has never had a line infection and that's how I want to keep it, so I'm feeling relieved that we've got the same group of nurses taking care of his port again.? I know that's not a guarantee he'll never get a line infection, but I know I can trust them to do their best to prevent it & that's reassuring to me. In other news, we picked up Joshua's new tilt-in-space wheelchair and he likes it a lot.? We've also added 'wound care' to his list of daily treatments because his crawling everywhere while dragging his right leg caused rug burns to the outside of his ankle/foot and they ulcerated from the continued friction.? Our pediatrician was concerned about the possibility of infection, so she asked the wound care nurses at the hospital to help manage the treatment of the sores.? We're scrubbing his foot & ankle with antibacterial soap each day (this is where Joshua's lack of sensation is a benefit), then applying antibiotic cream covered by a mesh screen that prevents bandages from sticking to the wounds, and then his foot/ankle gets wrapped in thick gauze & the whole thing is covered by 2 socks.? None of it bothers Joshua, which is good, and hopefully it'll heal quickly & without incident.? He won't be able to go without shoes & socks again, at least until he stops crawling everywhere.? Written May 16, 2011 10:59pm by Kate Parker Having Joshua's port accessed 24/7 intimidates me a little bit.? The risk of infection is greater than 50% & when accidents occur, like what happened today, it scares me because sepsis can be fatal & Joshua has no reserves to fight anything at this point in time.What happened today?? Well, we met our home health care nurse, Tamara, this morning (she was really nice to Joshua & he was comfortable with her, so that made me like her pretty quickly), and she decided to do Joshua's dressing change today rather than on Friday because she has to drive 1.5 hours to see us & she wants to do lab draws & dressing changes on the same day (makes absolute sense to me).? So even though the IV nurse at the hospital did a dressing change on Friday right before Joshua was discharged (and they last a week), we did another one today to get Joshie on a better schedule.? The dressing change went fine, no problems, and Tamara changed the cap that screws into the tubing that goes into Joshua's port (which subsequently goes to his jugular vein).? All looked great & we both went about our daily business.? Then this evening, I had 5 of the kids out with me & Joshua was hooked up to his TPN.? When Adam went to put Joshua in his car seat while I put the wheelchair in the back of the van, I suddenly heard, "Mom!? It fell off!"? Immediately, I headed to the side of the car while asking, "WHAT fell off?"? Adam was holding up the TPN tubing with the cap attached to it, which meant the tubing of his port was hanging there, completely open.? We got his port tubing clamped off, paused the TPN so it would stop dripping out of the open cap & then I quickly checked my bag for an alcohol wipe, which I could not locate (note to self: carry lots of alcohol wipes just in case from now on).? I had hand sanitizer, so I cleaned my hands & then did a quick wipe of the end of the cap before screwing it back into the port tubing, praying the entire time that this was not going to lead to an infection.? Then I called Tamara to get her advice about what to do.? She told me to go home & change out the cap & to scrub the female end of the port tubing with an alcohol wipe before attaching the new cap, so that's what I did.? Now it's a matter of waiting to see if anything starts growing in his line, but I am praying fervently that it does not.? From now on, I will be checking the tightness of every cap & attachment on Joshua's tubing periodically throughout the day.? I'll carry spare supplies in case I would need to do an emergency dressing change or cap change.? I'll stock my diaper bag with a dozen extra alcohol wipes.? Those things will blend nicely with the spare g-tube buttons & supplies I carry with me in case I need to do changes of Bethany or Joshua's tubes while I'm not at home.Maybe I should have thought ahead & packed extra stuff as a "just in case" contingency, but I had no idea that the IV caps could unscrew & fall off.? That's never happened in the hospital!? I've also never had to contend with a child wanting to crawl around the house while hooked up to a central line & a heavy bag of TPN.? We're figuring it out, but the truth is it's all a little crazy right now as we get used to this new normal.? Knowing that a mistake on my part could result in a line infection developing (and that a line infection could be fatal) adds pressure to NOT screw up & that is what intimidates me.? I'm assuming I'll get used to it eventually, but right now, with it being a new situation, it's unnerving. ? Joshua is having increased headache pain now that we're home & he's up & moving around more.? The upside is that we're able to manage his pain pretty easily ~ if laying him down for 5-10 minutes doesn't help, he gets a dose of one of his pain meds? & that has been working to get him comfortable again. We're holding off with giving him Dilaudid since that's our "big gun" pain killer right now & we want to use it only when totally necessary.? He's also been throwing up A LOT, usually minutes after he eats, which has been discouraging to watch; however, I realized today that the prescription for Zofran that we got at the hospital was dosing him at half the amount of medication he'd been getting prior to this hospitalization.? No wonder it wasn't working!? I called our pediatrician to confirm that I wasn't imagining the previous dose Joshua had been on & she looked it up and agreed that yep, Joshua has been taking 4mg of Zofran each dose, not the 2mg that was prescribed in Portland.? Once I gave him 4mg instead of 2mg, he stopped vomiting.? I am not going to be cocky & say the problem is solved since Joshua is notorious for throwing up even while on Zofran, but I do anticipate the larger dose being more effective especially since he's been accustomed to the larger dose for over a year.? 1 person this Sign My Guestbook | Read Tributes Written May 13, 2011 8:25pm by Kate Parker Joshua was discharged from the hospital in the late afternoon & we are now at the Ronald McDonald House until tomorrow, when we will leave to drive home!? Yeaaaa!!!!!I was taught how to mix his TPN & inject medications into it before hooking him up to it.? I had a friend ask me what the difference was between TPN & g-tube feeds, so here's my 'layman's explanation':? formula that gets pumped through the g-tube goes into the stomach, where enzymes & gastric juices begin the digestion process, breaking food into smaller bits before it moves to the small intestine.? Once in the intestine, the partially-digested food gets further broken down into basic substances ~ protein, carbs, fats, vitamins, minerals ~ and those get absorbed into the bloodstream, where they can be used by the body for energy & growth.? TPN is a mixture of the basic substances that gets pumped through a central line into the veins to be used by the body for energy & growth.? TPN bypasses the first stage of digestion completely.? Joshua's TPN will infuse for 16 hours each day, running from 5pm to 9am (or thereabouts).? I'm happy that most of his waking hours will not be spent hooked up the pump. All things considered, Joshua is doing great!? If you compare him to a typical (ie: normal) 5 year old, then his being in a wheelchair, unable to walk right now (too weak after a month lying in bed), throwing up roughly 1/2 of what he ingests, being fed through a central line 16 hours a day, & needing a fentanyl patch & lortab after having a nerve block to control his pain probably doesn't sound so wonderful.? But when you consider that one month ago, he was admitted to the hospital in acute respiratory failure & right now, he's not needing to be on oxygen, not needing continuous monitoring via pulse ox, and he's not having episodes where he doesn't breathe as long as we do not let him lay on his stomach (and yep, we have doctor's orders saying he is not to lay on his stomach or hyperextend his head backward), that is pretty darn fantastic!? I learned years ago to not compare Joshua to his peers because it results in my feeling sad; as such, I can feel sincerely happy that he's doing so well compared to where he was a short time ago.? I have no idea what the future holds, aside from a trip to Give Kids The World through the generosity of the Make A Wish Foundation (yippee!), but as of tonight, Joshua is in the best shape possible to face whatever comes his way, which makes me one happy mama.? I am so thankful for the doctors & nurses at Legacy Emanuel who worked so hard to get Joshua to this stable place ~ they are incredible & I hope I was able to adequately convey to them how VERY much they are appreciated.? God has truly blessed us with a superb medical team to take care of my little guy & I feel so fortunate that they care so much about him.? As we hugged nurses & thanked doctors before leaving today, it was with a measure of sadness because even though we'd rather not be in the hospital, saying 'goodbye' means we won't see the people who have become like a second family to us for (hopefully) a long time.? Maybe it seems crazy to care so much about hospital personnel, but I don't know how a parent avoids it when these hard-working people make such a profound difference in a child's life.? I'll always have a soft spot for our medical team at Legacy Emanuel.? They're the best!1 person this Sign My Guestbook | Read Tributes Written May 12, 2011 12:18am by Kate Parker It was fantastic seeing my family when they came up for a quick visit on Friday/Saturday.? The hospital staff extended many kindnesses to all of us, too, such as bending the rule that says only 4 people can be in a patient's room at one time.? One of the wonderful Child Life specialists brought in two canvasses stretched on wooden frames & acrylic paint in a variety of colors so we could make the kids' hand prints (thanks so much, Lynn!).? She also gave us "touch stones," which are tiny square tiles that have a heart engraved on one side.? We put Joshua's fingerprints (or finger smears, as most looked like, LOL) on the back of the tiles.? Each of the older siblings got a stone ~ they can keep it in their pocket & when they're thinking of Joshua or missing him or praying for him, they can touch the stone or rub it or whatever and know that Joshua has touched it, too.? It's a tangible reminder for them that they carry their brother with them everywhere they go & hold him close to their hearts.? One of the hospital chaplains we've befriended (he's followed Joshua through several hospitalizations, has prayed with Adam & me numerous times & has 'been there' to listen & help me through some tough situations) arranged for a photographer from Now I Lay Me Down To Sleep to come take pictures when Charley & the kids were here.? It was a tender, bittersweet experience that I am thankful we were able to have.? The pictures will be precious treasures. (Thank you once again, Merv!)In the past few days, I've spent time reading my Bible more & reflecting on my faith & my reactions to the situations that have come my way this past month while in the hospital.? What I have been reminded of is the fact that God is good, all the time, in every circumstance.? Nothing comes to me (or my family) without first passing through God's hands, and since He is GOD, I can trust that He is working things out for His glory.? Period.? I think there are times in every believer's life when they really have the opportunity to demonstrate that the things they profess to believe are ACTUALLY what they believe.? I think maybe that is why hard times often bring on a 'crisis of faith' for Christians.? It's one thing to say you trust God.? It's quite another to be in a situation where you realize you have zero control over a situation & you are faced with the option to stress out uncontrollably or to choose to rest in the Truths that you have claimed to believe all along.I've come to realize that I could be totally depressed about Joshua's situation and while no one would fault me for it, it certainly would not bring any glory to God.? I think it's better for me to walk in the faith that I have claimed for years... to put my money where my mouth is, so to speak.? The truth is that in the past few days, I recognized that allowing my fear of losing my son to consume me resulted in my ignoring God's desire to comfort me, Himself, through my sadness.? When I turned to Him fully, He was right there, ready to renew my hope & calm my fears.? I think it's okay to not be happy about Joshua's prognosis (I'm not inhuman), but it's not okay to lose sight of the absolute fact that God is GOD & He loves Joshua even more than I do (which means it's a whole lot), so of course He is going to do things in Joshua's life that will benefit him.? Just because I can't see the good in something doesn't mean there is no good in it.? Bottom line is that I trust God and His Word over what my limited mind can understand.? I don't always LIKE His plan, but hey, what kid is always thrilled with what her parent decides to do?? I know that my kids aren't, but they still trust that I am not going to do things that will deliberately hurt them.? How much more, then, can I trust that my heavenly Father is not going to deliberately hurt me?? I will continue to pray that God will heal Joshua & that my son will have a long life here on earth despite what circumstances lead doctors to believe will occur.? But if God does not heal Joshua, that does not mean He is cruel or punishing my family or that He cannot be trusted.? It means we'll be heartbroken & devastated beyond anything I can describe with words, but I will know wholeheartedly that Jesus Christ shares our sorrow & will comfort us & bring us through it.? I will have hope because I know Joshua will be in heaven & I will get to see him again.? Still, my heartfelt prayer is that Joshua will be here for a very, very long time.? In the meantime, I will choose to trust God & enjoy each day that He gives me with not only Joshua, but all of my children.? No one is guaranteed tomorrow, and this past month with Joshua has brought that truth into startling clarity for me.? 1 person this Written May 11, 2011 3:25pm by Kate Parker Joshua has been pretty stable the past few days.? He's still throwing up more than anyone would like & it's a bit of a challenge in the mornings when he routinely vomits his medications, but after he puked his first med given this morning, his nurse decided to spread the meds out, giving him just one every 30 minutes (and re-dosing the one he'd lost), and he didn't throw up any of them. Victory!? We'll do it that way from now on.He's lost a little more weight despite starting TPN (going from 18.4 kg to 18.1 kg ~ he started out this hospitalization at 20.7 kg), so the dietician tweaked the "recipe" Joshua's getting.? I don't know if he's gaining yet ~ he hasn't been weighed since changing the formulation 2 days ago ~ but things are heading in the right direction there.? When we go home, he'll be hooked up to TPN for 16 hours each day, with most of those hours being overnight.? It will be nice to have him not hooked up for most of his awake hours.He may be having a greater & lower occipital nerve ablation tomorrow, but the team is investigating whether this is actually a good decision or not.? There is one significant side effect ~ the possibility that the phenol injected can cause skin erosion, which could leave Joshua with gaping open wounds in his head ~ and the anesthesiologist said the odds are about 1 in 10 that it could occur.? That's scary, so Joshua's team is going to do some research, talk with other anesthesiologists at other hospitals about their experience, then let me know sometime this evening what their recommendation is.? If we don't do the ablation, Joshua will have monthly nerve blocks done on an outpatient basis.? That would be a hassle to have to come to Portland once a month, but it's Plan B.? I'm praying for God's wisdom to enable Charley & me to make the right choice for Joshua. 1 person this Sign My Guestbook | Read Tributes Written May 7, 2011 8:49pm by Kate Parker We've had a few mixed up days as of late. In the "good news" column, Joshua had an occipital nerve block yesterday & we've seen a significant reduction in his pain since then.? He started TPN & seems to have more energy now that he's getting a decent number of calories.In the "not so great news" column, his vomiting has remained predictable ~ each time he eats, he throws up.? But he doesn't just throw up once or twice; no, he spends 30 minutes or more throwing up in spurts.? This, of course, gives him a headache.? Thankfully (going back to the 'good news' column briefly), after he is done vomiting & rests for a few minutes, his headache goes away.Another not-great development started today ~ Joshua had some significant apnea & bradycardia episodes that were triggered each time he tipped his head backward while laying on his belly.? Then, when he was sitting beside me with his head resting against my shoulder, his oxygen level was totally normal, but his heart rate began dropping quickly.? I laid Joshua down & jumped up to press the 'staff emergency' button.? At that point, his heart rate was down to 29.? The nurse came hustling in & we watched the monitor as Joshua's heart rate rose back into a more normal range.? He was pale & did not look well.? The nurse said I was pale, too.? Adrenaline does that to me, I guess.?? Watching Joshua stop breathing is not as scary to me as watching his heart rate drop? because if it's his breathing, we can DO something to try & stimulate his brain stem to kick back into gear, but when it's his heart rate going down, there's absolutely nothing that can be done until he either kicks into gear on his own or his heart stops (in which case he would be resuscitated by medical personnel).? Either way, though, today's events were scary.About a half-hour after Joshua's stats went back to normal, the pediatrician came by.? She invited me to step into the hall to talk & we discussed what would occur if Joshua coded today.? She wanted to verify that I would want him resuscitated if his heart stopped and asked whether I'd want him intubated if it became necessary.? We outlined what we'd do, what we wouldn't do, & at what point we would stop treatment.? I've had this sort of discussion before (during this hospitalization), but today was the first time anyone was concerned the plans might actually need to be implemented imminently.? To say it's unnerving is the biggest understatement possible.? Dr. G stated that Joshua is not allowed to lay on his stomach anymore since his heart rate begins dropping when he's in that position and because when he tips his head backward to look up at the television or to play a video game, he stops breathing.? He's not thrilled with not being able to assume one of his favorite positions, but I don't really care.? I'm not thrilled with his penchant for not breathing & having his heart rate fall when he's in one of his favorite positions.Charley arranged to get a day off from work & is going to bring the other kids up to see Joshua (and Adam & me).? It will be good for the kids to see their brothers & I am really looking forward to loving on my family, even if it's just for a short visit.? We don't normally bring the entire family all the way to Portland to visit Joshua when he's in the hospital, but after today, Charley & I agreed that in case something horrible happens, we don't want our children's last memory of Joshua to be when he was in respiratory failure at home, so they'll make the trip & spend a day visiting before going back home.? My prayer ~ and what I would ask others to pray for, as well ~ is that Joshua's brain stem would work properly so that his heart rate, blood pressure & breathing would be normal & stable.? While I am absolutely thrilled that he's not having unmanageable headaches right now for the first time in a very long time, it doesn't do much good to be pain-free if he's not going to be able to breathe or have his heart beat the way it should. 1 person this Sign My Guestbook | Read Tributes Written May 4, 2011 5:55pm by Kate Parker Since Joshua is vomiting pretty much anything he eats or drinks, it was decided today to start him on TPN.? His GI doctor will be coming by to chat after clinic ends this evening; we'll see if she has anything to suggest that might help get his gut functioning more smoothly again.He is able to pee on his own again, so that is a relief.? I praised the heck out of him when he wet that first diaper & he gave me a look like he thought I was crazy.? I guess maybe it seemed that way, but honestly, I was so happy to see him able to go on his own again!? Cathing him isn't difficult, but it's obviously easier if he can take care of that bodily function on his own, as it's one less thing for me to have to do.The nerve block procedure got bumped to Friday afternoon after something came up with peds sedation.? I'm not thrilled with the delay, but I am thankful that at least it will get done before the weekend.A case manager came by & we discussed a possible timeline for getting Joshua discharged.? We think that if the palliative care doctor & pain management doctor can get Joshua's "cocktail" of medications tweaked correctly & if the occipital nerve block works and then gets re-done to make the effects permanent, it's realistic to think we could have the final care conference with all of the specialists & then Joshua could be ready for discharge by the end of next week.? If his gut is not working by then, he would be discharged on TPN.? Ideally, he'll be able to eat & digest food again before then, but I was relieved to be told that once pain control is achieved, we can get out of here even if his GI tract isn't yet cooperating. Tuesday, May 3, 2011 3:46 PM, PDTJoshua started throwing up yesterday & has continued today. Anything he eats or drinks comes back up. We tried giving him 3 ounces pumped in over an hour and itstayed down for 1.5 hours before coming back up. We're going to try again after adding erythromycin to the mix. That's the medication we use to speed up Joshua'sgut motility and since narcotics can slow things down, we're hoping that by giving erythromycin prior to feeds, Joshua will be able to keep down some calories ratherthan vomiting up everything.He has been unable to pee since his last diaper change at midnight yesterday. That could be another side effect of the fentanyl patch and is one we're hoping willpass quickly. I cathed Joshie this morning & got almost 12 ounces out. If he doesn't start going on his own, we'll either have to start cathing him regularly again orthe pain management doctor will have to re-think using the fentanyl patch.It feels like we're going backward, but I still have faith that everything is going to get sorted out eventually. It's just tough waiting things out.Sign My Guestbook Read TributesMonday, May 2, 2011 8:37 PM, PDTIt took waiting until after 6pm, but the pain management doctor was worth the wait. He came in when Joshua was crying & squirming around the bed in pain, so he gotto see firsthand what is going on. Thankfully, he had a plan.He's going to do an occipital nerve block, which is a procedure where anesthetic & steroids are mixed together & injected beside the greater & lower occipital nerves.This blocks the nerves' ability to transmit pain signals and, if it's successful, could relieve a lot of Joshua's head pain. The procedure will be done under sedationsince Joshie's a little guy, which I am thankful for since the idea of sticking needles in the back of his neck sounded pretty uncomfortable to me. If the nerve blockis successful, Dr. R will sedate Joshua a second time so he can inject phenol into the occipital nerves to permanently destroy them. These are sensory nerves only, sodestroying them won't harm Joshua's functional abilities in any way. I don't know yet when the first nerve block procedure will be. Dr. R sent a request to the pedssedation team, asking them to schedule Joshua as soon as possible, so this might happen in the next day or two.Joshua's medication will be changed from neurontin to pregabalin, but I am not sure when that switch will take place. I *think* it's going to happen after the nerveblock is done ~ the doctor doesn't want to change too many things at once or we won't know what, specifically, is helping.One aspect of Joshua's pain management that began immediately was the placement of a fentanyl patch on his back. These patches last for 3 days each, delivering 25mcg/hr of pain medication. They can be used long-term, in increasing doses, as needed. Dr. R said Dr. W (neurosurgeon) wouldn't like him putting Joshua on fentanylpatches (Dr. W doesn't like putting anyone on long-term narcotics), but Joshua was in his court now & he was going to treat him according to what he felt is best. Itotally support Dr. R's attitude regarding this. Don't get me wrong; I love & respect our neurosurgeon, but she's done all she can & now that we're at the point ofneeding to utilize pain management, I prefer to follow the advice of the expert in that field. I switched gears a few days ago (from wishing for more treatmentoptions to accepting that there don't appear to be any more), so I'm feeling okay with pursuing quality of life for Joshua now versus quantity of life. Ultimately, onlyGod knows how many days Joshua (or any human being) has in his life, anyway, so I'm not going to focus my time & energy on worrying about when he might die. Godstabilized Joshua for an entire year (November, 2009 to November, 2010) & if He wants to, He can do it again. No, I'm not in denial about the reality of the situationat all... I just realized that I could waste my time with Joshua being sad or I could put my trust in God & believe that He has it under control, no matter what, andenjoy the time with my son (and other children) for as many days as we're granted. As a Christ-following believer, I choose to believe the latter, that God holds us allin the palm of His hand & I don't need to fret. That doesn't mean I'll never get hit with a wave of sadness, but it does mean that I will endeavor to lift my eyes tothe maker of heaven & earth and rest in Him no matter what the circumstances of life look like.I'm happy that the pain management doctor has a plan & that he is just as determined to get Joshua's headaches under control as I hoped he'd be. I'm praying thatthe occipital nerve block will be successful & that it, combined with the fentanyl patches & medication, will keep Joshua pain-free & enable him to enjoy life to thefullest. :)Sign My Guestbook Read TributesMonday, May 2, 2011 12:50 PM, PDTJoshua is essentially recovered from surgery. The only changes I've seen are that he now has apnea episodes while lying down, which is not good, but he can pophimself out of them without intervention, which is good. He's having pretty intense headaches, too ~ severe enough to make him vomit. I don't think it helped thatthe neurosurgeon decided at 5:05pm on Friday that it was time to wean Joshua from his PCA pump (continuous fentanyl) but didn't bother to get any other form ofpain relief arranged. She did say she'd call pain management, but again, at just after 5pm on a Friday, it wasn't like anyone was going to come on the weekend. Andthey didn't. Which meant Joshua had some rough patches on Saturday & Sunday. Which resulted in my increasing frustration because I don't like seeing my child inpain & completely miserable. As of now, 1pm Monday afternoon, we're still waiting to see if anyone from pain management shows up.He was weighed last night & we were surprised to realize he's lost 2.3 kg (a little over 5 pounds) in the past 17 days. Yipes. I knew he wasn't eating or drinking muchof anything, but it didn't occur to me that he might be losing a significant amount of weight. We'll be starting tube feeds sometime today, but again, it's a matter ofhaving to wait for a doctor to order formula for Joshua & who knows how long that will take?I think it's time for him to be moved off the neurosurgeon's service & back to the pediatric service. When Joshua was first flown up here 2.5 weeks ago, he wasadmitted on the pediatric service, which meant he saw a pediatrician every day & they took care of whatever need came up. Last Monday, when he had surgery, he gotmoved to the neurosurgical service, which made sense. But now that he's a week out from surgery & there isn't really anything more that Dr. W can do, I am thinkingmaybe he should be switched back to peds so that things like phone calls to the pain management doctor & formula for tube feeds can be taken care of right awayversus at the end of the day when the neurosurgeon gets done with all of her surgical cases for the day.Joshua still can't sit up for more than a few seconds, but I'm not sure if that is related to surgery (low-pressure headache, perhaps) or the generalized headache painhe has. Truth is, I don't know why he's acting the way he is. All I really know is that his Make A Wish trip is coming up & I would like him to be able to enjoy himself,which isn't going to happen if he's hurting. As such, I want the pain management doctor to figure something out soon & get things underway so that Joshua can feelbetter & then we can get out of here.Sign My Guestbook Read TributesThursday, April 28, 2011 7:28 PM, PDTNot a lot to update. Joshua continues to recover. He is still sleeping a lot, though he's awake more today than he was yesterday. He's still on a fentanyl PCA pumpplus getting boluses of fentanyl as needed. He continues to have generalized headaches & we aren't sure whether those are the same kind he was having pre-surgeryor if they're a post-operative headache caused by CSF fluid changes.I've been having conversations with medical staff regarding Advance Care Planning for Joshua, which is the 'pretty' way of saying we're discussing end-of-life things& making some decisions regarding that eventuality. I feel it's better that we do it now while Charley & I are calm, cool & collected (relatively-speaking) versus in theheat of the moment, when our emotions will be running high & we may make decisions that we would later regret or wish we'd done differently.One thing we feel strongly about is organ donation. We are hoping that circumstances will enable us to donate Joshua's organs after he passes, but in order for thatto happen, there are criteria that must be met (he has to die in a hospital, his heart can't stop beating or must be restarted quickly if it does, etc). The palliativecare doctor here arranged for a coordinator from the organ transplant team to call me yesterday & she informed me of the requirements a potential donor mustmeet. If circumstances allow for organ donation after Joshua's death, we will give whatever can be used because we believe Joshua's spirit will be with God in heaven& there won't be any need for his organs to be cremated with the rest of his body. We are praying donation will be possible because we would like to feel thatsomething good came out of a horrible situation, and we would be comforted to know that other children were given a chance to live even though our son could not.The conversations are hard & they hurt, but I feel a peace in knowing we're getting this stuff hammered out ahead of time as much as possible. Once the basic 'plans'are made, it will be a relief to not have to think about it anymore and go back to focusing on LIVING with Joshua & doing all the things we love with him.Sign My Guestbook Read TributesTuesday, April 26, 2011 12:04 PM, PDTAbout an hour after my last update last night (ie: about 11:30pm), the nurse got Joshua's pain under control (his fentanyl IV is now running at 30mcg/hr, for all of mynursing friends reading this) & he had a restful night. He gets 20mcg bolus doses of fentanyl & morphine as needed, plus scheduled doses around the clock of valium,tylenol & neurontin. It's all working together to keep him pretty well-sedated & not hurting, which is (of course) a good thing.Dr. W came by & said Joshua looked good. He does have two small wounds above his ears where his head was immobilized by pins, but aside from some oozing of blood,they're not causing any problems.He'll be staying in PICU for another day. We anticipate being able to move him to the main peds floor tomorrow. He'll be on a PCA pump (continuous fentanyl), whichwill be helpful for keeping him comfortable. I look forward to getting to the regular floor if for no other reason than there's a window in the room (here in PICUthere are none) & a bathroom in the room (we have to leave the unit to access a public bathroom while in PICU) & I actually get some sleep at night (almost impossibleto get more than a couple of hours on the vinyl recliner in here). I know this hospitalization is not about me, but I am a better mom for Joshua when I'm notexhausted (just like any parent). Also, our favorite nurses are on the peds floor & I know many of them would like to take care of him while he's here & I enjoygetting to visit with them throughout the day, too, so that's another perk of not being in PICU. :)Joshie's stats have been good ~ his heart rate hung out in the 70s/80s last night and he's currently holding steady in the upper 80s/low 90s right now. His O2 sathas been in the upper 90s & he's just getting blow-by oxygen now to help with that. His respirations have only dropped super-low (to 4) once; other than that, they'reholding steady between 11-15 while he sleeps and are right around 20 when he's awake (which is where they should be). Overall, he's looking good & everyone is happywith how he's doing at this point in his recovery (phew & yea!).For today, we're just keeping things low-key, as quiet as possible, and letting Joshua sleep as much as he can. If anyone wants to visit, you're welcome to do so, but Iwould prefer that you wait until Joshua has been moved to the main pediatric unit since PICU is strict about visitors & Joshua isn't "up" for company right now. Adam& I are doing fine ~ we're well-stocked with provisions at the Ronald McDonald House & we're just going about our usual hospital routine. Everyone at home is doingwell, too. Charley & Megan have their routines that they go into when Adam, Joshua & I are up here in Portland and we've all done this enough times that things runpretty smoothly. Occasionally something unexpected comes up to throw us for a loop ~ like last night when Charley received a call from his sister telling him theiruncle had died ~ but in general, life continues on for the rest of my kids in my absence. Megan does a great job of taking care of everyone while her dad is at work andthat is something I am profoundly thankful for. I have incredible kids & my adult kids are phenomenal people ~ God truly blessed me with the addition of Megan &Adam in my life! :)More updates to come as things progress. I know there will eventually be another care conference where we'll discuss what comes next... I know that this surgery wasprobably the last treatment option we had for Joshua, so we (his specialists & myself) will have to talk about where we go from here, but I'm not sure when that willhappen. I doubt it will be in the immediate future; I assume it will be closer to the time of Joshua's discharge from the hospital. It's not something I'm spending alot of time thinking about right now since I've got my little boy's recovery from this surgery to occupy my thoughts (something I'm actually thankful for).As always, thank you for thinking of my family & saying prayers for Joshua. My family & I sincerely appreciate having others seeking God on our child's behalf.Sign My Guestbook Read TributesMonday, April 25, 2011 10:15 PM, PDTPain control has been a bit of a challenge, which isn't unusual for the immediate post-op period with Joshua. He's been getting oxygen to keep his O2 sat at 95 & hasan IV of fentanyl in addition to other pain medications, so I anticipate that we'll get him comfortable & be able to keep him that way soon.He came to PICU with a peripheral IV, which hasn't happened since he got his port almost 3 years ago. I asked about it & was told the anesthesiologist had wantedextra access while in the OR. Since it was bothering Joshua, the nurse removed it about an hour ago & that has helped calm him. I am thankful to have a very kindnurse tonight who is taking excellent care of my little guy. In one of those "it's a small world" type of coincidences, she & I realized while chatting that we hadattended the same high school (different graduating years) & her older brother was friends with my twin brother during high school. :)Overall, Joshua is doing well right now, which is a huge relief. The goal tonight is to keep him comfortable & to hopefully get him a decent amount of sleep. If we canget him out of pain completely for a decent length of time, I think it will be possible to get Joshie to drift off to sleep, but so far, it's not happening. I know thenurse is being careful about how much narcotics she gives Joshua since they depress the respiratory system & no one wants to have him stop breathing. If thathappened, they could reverse it by giving him narcan (a drug that binds to narcotics in the system & renders them ineffective), but then he'd have no pain control &that would be horrific. So... it's a fine line the PICU doc/nurse are walking, but I'm confident they'll eventually figure things out so that Joshua can get some sleep.Hopefully it'll be soon because I fully admit that I'm wiped out and I'd like to be able to try to get some rest, too.Sign My Guestbook Read TributesMonday, April 25, 2011 5:11 PM, PDTSurgery is over and went as well as it could. Dr. W said the inside of Joshua's head was a mess, with regrown bone and abunch of scar tissue everywhere. She cauterized his cerebellar tonsil way up and off his brain stem, which should help him.I am relieved surgery is over... now to get him recovered and out of here so we can get ready for his Make A Wish trip onJune!I will update more after I get to see my boy. Thanks for the prayers and well-wishes.Sign My Guestbook Read TributesMonday, April 25, 2011 1:45 PM, PDTJoshua went back on time. Dr. W has a second neurosurgeon assisting her today, which is a first for one of Joshua'ssurgeries. She told me that she thought an extra set of surgical hands plus another neurosurgical mind might be good tohave when they're in there today.Sign My Guestbook Read TributesMonday, April 25, 2011 10:57 AM, PDTSurgery is scheduled for 1pm. I will update as I can. Joshua will go to PICU afterward, but I'm unsure how long he'll have to stay there before getting to come backto the regular floor.He had a pretty good weekend, all things considered. We got to take him to the Ronald McDonald House on a pass for a few hours both Saturday and Sunday, whichwas nice. Saturday's outing was rocky at the start, with Joshua throwing up because of headache pain & our needing to take him back to the hospital for medication &a rest before venturing out again a few hours later (at which time he did great). Yesterday's outing to the RMH was fun for him ~ he sat on a couch & played RockBand on the Wii with Adam. :)He knows he's having surgery today & is thus far very calm about it, which is a testament to the power of prayer. I need to go take a shower & get things organizedfor Adam to take down to the RMH, though, in preparation of being moved to PICU, so I'll end this for now and update later today after surgery is over. Please prayfor the surgery, for Dr. W to be given wisdom from God to know *exactly* what she can do once she's inside Joshua's head to help him, & for all of the nurses & otherdoctors who will be involved in Joshua's care today. As always, I appreciate your support & prayers tremendously.Sign My Guestbook Read TributesThursday, April 21, 2011 7:25 PM, PDTJoshua will have a 5th chiari surgery either tomorrow or Monday (don't know which day yet). The neurosurgeon did not agree with the radiologist's assessment thatthe MRI was okay, so we discussed her doing this last surgery. No one really expects that it's going to help, but everyone involved in making these decisions agreesthat if we don't do the only thing that has a chance of maybe stabilizing Joshua for awhile (and thus giving him more time here with us), we will all regret it. No oneinvolved wants to look back & wonder, "Would that last chiari surgery have made a difference? Maybe it would have helped......" So yeah, it's pretty much a 'lastditch-so-we-all-know-we-did-everything-we-could-and-no-one-has-to-look-back-with-regret' surgery, but we're doing it.The care conference will be held after Joshua's surgery (not necessarily the same day, but sometime before he's ready to be discharged). I had a consult with thepain management doctor today & he had many ideas for getting Joshua's pain under control, which was a huge relief to hear. We'll be talking more after the surgery.I'll share more about what the plan for pain management is once I know specifics. Right now, I'm just relieved that someone is going to make sure Joshua doesn't hurtanymore.Sign My Guestbook Read TributesThursday, April 21, 2011 10:16 AM, PDTThus far, all of the tests done this week have been normal, which isn't great news when we were hoping to find something that could be fixed. We're waiting on theresults from the brain stem conduction tests that were done yesterday and consults from neurology & urology, which should all be completed today. After that,there's nothing new to check for (that I know of) and from my understanding, another meeting will be arranged between all of the specialists (and me) & we'll go fromthere. I was told we are probably going to have to make some "tough decisions soon," so that doesn't fill me with hope that this week of testing yielded anything thatis going to change the outcome we've been hoping to avoid. I can't string together any words that adequately describe/express my feelings about this, so I'm notgoing to try other than to say my heart literally hurts.Sign My Guestbook Read TributesTuesday, April 19, 2011 11:00 AM, PDTA synopsis of yesterday's care conference:The team as a group is not ready to admit there is nothing more that can be done for Joshua even though they all openly acknowledged that they each (individually) donot think there is anything more they can do for him. The bulk of the meeting was spent brainstorming ~ especially between the geneticist & neurosurgeon ~ everyonewas throwing out every possible (if only remotely probable) condition that *might* have some sort of treatment that would give Joshua a longer life. Things beingconsidered: occipitalatlantoaxial hypermobility, some cardiac problem, autonomic hyperreflexia, autonomic dysfunction, how well is his brain stem functioning, bladder& bowel function (to determine if his propensity to hold urine for 5-6 hours distends his bladder to the point it affects the vagus nerve or if the vagus nerve isnegatively affected by his neurogenic bowel ~ please don't ask me the relationship there because I still don't understand it). Also discussed was the possibility of aneurodegenerative disease or a metabolic disease (even though yes, those have already been evaluated & ruled out in the past).To evaluate for all of these things, the team ordered flexion/extension x-rays, an MRI, multiple conduction tests of the brainstem (SSEPs, BAER), telemetry to checkfor heart problems, cardiology consult, ophthalmology consult (to check for things in the eyes that help diagnose varied neurodegenerative diseases), neurologyconsult, potentially a urology consult (and possibly surgery if that's warranted), physiatrist consult, ultrasounds of bladder to check for post-void residuals, KUB x-ray,& possibly using a cervical collar to test theory of cranial settling.All of the tests will be done while Joshua is in the hospital. After the tests are complete, the team will reconvene for another care conference to discuss the results,what they mean, and where to go from that point. If everything looks okay on the tests being done & there is nothing more to be considered, then the decision tomove Joshua to hospice care will be made (that's my understanding, anyway). If something comes up on one or more of the tests, then that will be followed-up witheither more testing or treatment of some sort or whatever the doctors decide they want to do. Eventually, though, Joshua will be on hospice ~ the goal this week is tocome up with something they can do to help prolong Joshua's life, but they cannot cure him or fix him permanently because of the underlying chromosome disorder.So... we got a stay of execution. We'll still have the difficult care conference (the one where we hear that there's nothing more that can be done), but the teamdecided it wasn't going to be at yesterday's meeting. Depending on the test results, it may be at the end of the week, instead, but I am praying they come up withsomething that is going to work to give Joshua more time... a LOT more time.Joshua is currently on telemetry for his heart & he had the flexion/extension x-rays yesterday. He'll have the MRI, bladder ultrasounds & some consults today. He'llhave consults with neurology & ophthalmology tomorrow (probably some other things, too, but that's all I've heard about so far). I don't have a schedule for the otherthings yet.If nothing else, Charley & I will always have the reassurance of knowing without a shadow of a doubt that this medical team did EVERYTHING they could possiblythink of and they turned over every rock in search of something to help Joshuar rather than giving up when the going got tough. I'll admit that I was relieved that noone was ready to admit defeat because I was not ready to hear that they were giving up. I know the hard conversations are still to be had, but I'm relieved that itdidn't have to happen at yesterday's conference and that for now, at least, we still have a glimmer of hope.Sign My Guestbook Read TributesSunday, April 17, 2011 11:05 AM, PDTThe past two days have been calm ones, thankfully. Joshua hasn't had any apnea episodes & while his heart rate has bounced between being too high &too low, he hasn't had any significant problems in either direction. Again, something I'm grateful for. Stability right now is exactly what we (his parents& doctors & nurses) want.His prolonged oxygen deprivation on Thursday left its mark, unfortunately. Joshua's having difficult regulating the volume of his voice, he gets confusedeasily (saying, "What does that mean?" to basic statements/questions, such as "Is it raining outside?"), forgets things he was told an hour previously, andis having trouble realizing he's in a hospital (he says he's at home when asked where he is). We got him up to assess his walking this morning & foundhim to be off-balance, holding his body in an awkward posture & his right leg (always his weaker leg) buckled under him a few times. Whether or not anyof these new things will improve or not is unknown at this time. We'll just have to wait & see.We had a roommate on Friday, but they were moved out last night so we now have our own room. A nurse told me the charge nurse had written a notesaying Joshua isn't to be given a roommate because they recognize that this is a difficult time & everyone knows Monday is going to be a tough day andthey want us to have privacy. While I appreciate the kindness, the reason *for* the kindness is depressing.Joshua continues to have headaches of varying severity. They're being treated with vicodin & toradol, plus he continues to get neurontin three times perday. The doctors are avoiding using heavy-duty narcotics (like fentanyl) since they don't want to depress Joshua's respiratory function.He is awake, aware, and when he's not hurting, he's generally happy. His articulation is worse than it used to be and there are definite cognitive changes~ assumed to be a result of the prolonged oxygen deprivation experienced on Thursday ~ but other than that, he's basically like when we're at home.When he's stable, he's fine. When he's not stable, he's not fine. That sounds simplistic, but it's basically how things are right now.Tomorrow's meeting with the specialists is at 3pm. I don't know if I will update here tomorrow night or not, but if not tomorrow, there should be anupdate by Tuesday. Tomorrow will be a pivotal day in Joshua's life and one that will most-likely be very emotional for my family. If you feel led to prayfor the people who will be involved in the meeting ~ for God to grant us all wisdom & knowledge of what the best decisions are for Joshua ~ I would begrateful.Sign My Guestbook Read TributesFriday, April 15, 2011 10:00 AM, PDTJoshua is stable at this point. What happened yesterday is that he stopped breathing & despite getting 2L of oxygen/minute & having us strongly jarring/poking him &urging him to breathe, we couldn't get his oxygen saturation or his heart rate to come up & stay up. His heart rate was in the 30's and his O2 was equally as low. He'deventually start breathing, but was hypoventilating so his O2 stayed between 50 & 70%. As long as someone was sitting beside him, stimulating him & reminding him tobreathe, he was okay, but as soon as we stopped urging him to breathe & stopped poking him, he would stop again and his heart rate/breathing would again crash down.I made a bunch of calls, trying to make contact with one of Joshua's local doctors/nurses, and was completely unsuccessful (it was our ped & her nurse's day off),before finally giving in and taking him to ER. Adam sat beside him the entire way, continually talking to Joshua & touching him & telling him to breathe. When we gotthere, it was quickly decided that there was nothing the local ER could do for him, so Portland was called & the ICU intensivist made arrangements to get Joshuatransferred, suggesting that a tracheostomy could be done as a palliative measure to give us more time with Joshua if his other doctors determined there was nothingthey could do.Joshua has been pretty much stable since we got here. His oxygen saturation has been staying in the upper 80s/low 90s and his heartrate has bounced around a lot,but it hasn't dropped dangerously low. This doesn't mean he's fine, unfortunately. It is typical for Joshua to have apnea episodes or extreme bradycardia episodesthat, once he's stimulated & his O2 and heart rate are brought back within normal limits, he stays there for awhile. Sometimes he stays stable for hours. Sometimesfor days. But eventually he has another big episode (there are intermittent, smaller episodes tossed in between the big ones, but those he easily recovers from withoxygen & stimulation). Yesterday was the first time he went into acute respiratory failure, though, and now that he has, the belief is he will continue to do so as itshows progression of his downward decline. The question, then, becomes what are we going to do about it?As of right now, I don't have any answer. We're supposed to see the neurosurgical P.A. (our neurosurgeon is out of town until Sunday night), the geneticist, theneurologist & the palliative care physician today. We'll see what they say and go from there. I was asked about changing Joshua's POLST status from a fullresuscitation effort to DNR and I said I wouldn't consider it until I knew there was nothing left to try, medically-speaking, and I wouldn't make that decision withoutmy husband, who is coming up today. So, again, that's one other thing that we'll have to address.I'll update as I learn more and have the time. Thank you so much for your thoughts & prayers. I sincerely appreciate that so many are lifting Joshua to God.Sign My Guestbook Read TributesThursday, April 14, 2011 7:52 PM, PDTJoshua was admitted to our local hospital this afternoon in acute respiratory failure after spending an hour with low oxygensats & heart rate that would not go back to normal despite increased oxygen & us shaking him all the time. He had to beprompted to breathe. Portland is sending their flight team to pick us up & we're going to Legacy Emanuel. If theneurosurgeon can't do anything, the ICU doctor suggested putting in a trach as a palliative measure to give us more time.Please pray for a safe flight & for Joshua.Sign My Guestbook Read TributesTuesday, April 12, 2011 12:14 PM, PDTOn Monday (the 18th), I'll head back up to Portland for a conference to be held with Joshua's neurosurgeon, geneticist, palliative care physician, neurosurgicalphysician's assistant & (hopefully) our pediatrician listening in via phone. The neurologist was invited, but she'll be on vacation, so the meeting will go on without her.That's okay, since the neurosurgeon & geneticist are the two most-important attendees (they're the ones making the decisions).The meeting was organized at the neurosurgeon's request so that everyone could discuss Joshua's future and what, if anything, can be pursued for him medically orsurgically. Since I was anticipating a phone call telling me whether or not Dr. W was going to be able to do another brain surgery for Joshua and instead received aphone call telling me there was going to be another care conference and I needed to write down my questions & bring them with me since this will be the last time Ihave all of these doctors in the same room together, I am dreading going to that office on Monday.It feels like all we've gotten for the past few months is bad news when it comes to Joshua. All we've seen is decline. He is still generally happy ~ I don't want tomake it sound as though he's utterly miserable 100% of the time ~ but overall, he's trending downward rather than staying stable or moving toward improving. It'sdiscouraging & heartbreaking. Megan, Adam & Emily know what is happening. David, Sarah & Isaac have all asked if Joshua is dying (or going to die). We've had somevery difficult discussions with the kids, always making sure they understand that ultimately, God is the only One who knows how many days Joshua (or any of us) has inthis lifetime, but that we will continue to have hope and we will continue to pray for God to heal Joshua completely. If God's will is not for Joshua to be healed hereon earth, but rather in heaven, then we will be devastated, of course, but we will not grieve as those who have no hope (1 Thess. 4:13) because our faith rests in God &who He is. I'm not at all saying we'll be okay if Joshua dies. We won't. I can't put into words all I feel for this child... the depth of my love for him & the tearingpain that I experience when I think about having to live without him. I, who have never been a crier, find myself fighting back tears at the drop of a hat. Everymoment with Joshua has an extra measure of tenderness & bittersweet added to it. I have come to realize that no matter how many hours of video we have of him orhow many thousands of pictures we capture, it's all the intangible things that I love most about him that I won't be able to hang on to ~ the smell of his hair freshfrom a bath, the feel of his little arms wrapped around my neck & squeezing tight, the weight of him as he sleeps on my lap.... there's no way to capture those things onfilm or video, but they're the things I desperately wish I could hold on to forever.I am hoping that Monday's meeting will surprise me by offering some unexpected good news. At this point, what I think I'm going to hear is that the only thing thedoctors have left to offer Joshua is comfort measures. I am praying I'm wrong, though, because I am not ready to stop fighting for my son & it will be hard to acceptif the doctors are.Sign My Guestbook Read TributesWednesday, April 6, 2011 1:22 AM, PDTFive days ago, Joshua began having weird apnea episodes where he stares, unfocusing & unblinking, his chest not moving, and he doesn't respond to our calling his nameor a light touch. We have to jostle him and really move him around to get him breathing again, at which point he under-breathes ~ his oxygen saturation level stays inthe low 80's since his breaths are shallow ~ for several minutes while we continue to try and "wake him up" enough to breathe more normally. Once he's more awareagain (ie: brain getting enough oxygen again), he has an excruciating headache that leaves him writhing on the ground or in our arms because the brain doesn'tappreciate being deprived of oxygen for those few minutes. Today he was put on a liter/minute of oxygen. It won't prevent him from having apnea episodes, but thehope is that when he under-breathes, his brain will still get adequate oxygen & that will hopefully reduce the damage being done & maybe reduce the severity of hispost-apnea headaches. So far, he's not happy about wearing the cannula & having oxygen blown up his nose continuously, so if you want to pray that he'll get used to itquickly & be 'okay' with the cannula, I'd appreciate it.Sign My Guestbook Read TributesSunday, March 27, 2011 5:56 PM, PDTOkay, so I was totally wrong about the neurosurgery appointment on Thursday and then the appointment with the geneticist & subsequent follow-up visit toneurosurgery were worse.Joshua has two chromosome defects (believed to be spontaneous mutations), one of which is strongly suspected of being responsible for many of his medicalproblems. There really isn't anything that can be done to help him anymore; the geneticist gave the analogy of how a house built on a cracked foundation will havemultiple problems due to the faulty foundation & no matter how many times the house is repaired, it can't fix the underlying cracked foundation & ultimately, thehouse will have problems that cannot be overcome. The chromosomal defects are the cracks in Joshua's foundation & the chiari & spina bifida & pseudotumor cerebri& connective tissue disorder & brain stem dysfunction are the 'problems' that affect his body (the house). The geneticist said that the chromosome defect & chiaridon't play well together & he suspects this most-recent recurrence of chiari symptoms (the ones that started last November) was just too much for Joshua's body toovercome and that is why this cascade of symptoms began & we can't get control of them.The only treatment that could possibly offer some help ~ to slow the downward spiral that Joshua is currently on, not to make him better (nothing can do that excepta miracle healing by God) ~ is surgery, but since the 4 neurosurgeries he had in December/January did not make anything better, there is little hope that moresurgery would change Joshua's outcome for the better.Both genetics & neurosurgery agreed that it is time to get the palliative care physician more actively involved in Joshua's care so that his pain can be managed & hecan be kept comfortable and have a decent quality of life.Sign My Guestbook Read TributesWednesday, March 23, 2011 8:37 PM, PDTJoshua, Bethany, Adam & I are up in Portland again for three days of appointments for the two little ones. Bethany saw the rheumatologist today & she'll be havingher PEG tube changed over to a mic-key button tomorrow morning. Joshua will see the neurosurgeon tomorrow afternoon & then I have an appointment with thegeneticist to go over the results of Joshua's genetics testing that was done back in January ~ so far, all I know is there were two abnormalities found on two of hischromosomes (one duplication & one deletion), so the conversation with the geneticist on Friday should be interesting. He called me on Monday to say that he wantedto meet with me in person to discuss the results and he'd penciled me in to talk on Friday. It was a bit unnerving to hear his voicemail on my cell phone. It's hard tonot feel nervous when a doctor calls, especially when it's the geneticist. He had already talked with Joshua's pediatrician, but all she told me via email was that she &Dr. A felt I deserved to hear the results in person & this wasn't going to offer Joshua a cure, but maybe some answers. So... like I said, Friday morning's appointmentought to be interesting.I don't expect anything surprising to happen when Joshua sees neurosurgery. Even though he is technically having lots of chiari symptoms, there's not really anythingshe can do so soon after his last decompression surgery. This appointment will pretty much be a follow-up from January to confirm that nothing changed for thebetter, but with everyone involved understanding that nothing can be done to fix him.Sign My Guestbook Read TributesFriday, February 25, 2011 11:36 PM, PSTNeurologist approved increasing Joshua's Neurontin to the maximum dose for his weight. We'll titrate it up over the next 3 weeks & pray for improvement in hisheadache pain. If it works, fantastic. If it doesn't, there isn't anything else the neurologist can offer as a means to help.He saw his PT today & she said Joshua will again need a dorsiflexion-assist AFO since he's having a lot of trouble with his right foot being able to pull upward. Shealso said he's lost a lot of muscle tone on his right side, which is always disappointing.She & I discussed what to do about Joshua's wheelchair ~ since he desats most often when he's completely upright (& gets his worst headaches, too), he needs tohave a seat that either reclines the backrest portion or tilts back completely (the entire seat would tilt versus just the back part reclining). The medical supply guy iscoming to the office on March 11th and he'll be bringing a tilt-in-space wheelchair to try out, as well as a few adaptive items for Bethany & Hannah. I'm hopeful thatwe can get a new seating system or a new chair fairly quickly. I'm really hoping that we can just get a seat that reclines and will fit on his current chair base sincethat would be easier to obtain through insurance than an entirely new chair ~ insurance companies expect a wheelchair to last for 5 years (not unreasonable) andJoshua's only had his for 2, so there would have to be some good letters of justification to Blue Cross in order to get them to approve a new chair. In the meantime,we will use a suggestion that another friend (who used to be Joshua's PT) gave, which was to move the backseat portion of his chair as far back as possible & then usea triangular foam wedge to make it possible for Joshua to recline a bit.Sign My Guestbook Read TributesThursday, February 24, 2011 5:08 PM, PSTJoshua has had increasing headache pain that isn't controlled by the combination of Lortab on top of his Neurontin. I called our ped yesterday for advice & she askedme to contact the neurologist & neurosurgeon, so I put calls in to the nurses of both of those doctors. Dr. W (neurosurgeon) said there was nothing she could do atthis point since it hasn't been long enough since she last went into Joshua's head (which I knew... the first thing I told Dr. W's nurse was that I was not asking Dr. Wto *do* anything & I had zero expectation that she could help at this point, but I was advised to call & give her a 'head's up' about how Joshua was doing). I askedAndrea (Dr. W's nurse) if we could increase Joshua's dosage of Neurontin & she came back with the information that Dr. W wanted that order to come fromneurology rather than her since it was that specialty that put Joshua on the medication in the first place. Soooo... Andrea played phone tag with Lisa, Dr. H's nurse, &the end result was Andrea calling me at 6 o'clock last night to tell me that Dr. H had left without checking her messages & she (Andrea) didn't have a dosage increaseyet. Sigh. Andrea assured me she would call today to give me the new dosing information, though, and after I thanked her for calling & not leaving me hanging, wehung up.This morning, I headed out with Joshua, Bethany & Hannah for therapy appointments (B & H), a port flush (J) & labs (J). When I got home at 2pm, I asked Charley ifAndrea had called yet & was surprised when he answered that she hadn't. I called the neurosurgeon's office & got their answering service telling me the office wasclosed due to inclement weather. Apparently the storm that our weatherman had predicted would drop 6-10 inches of snow ended up in Seattle & Portland, instead.Bottom line? I'm still waiting to find out how much to increase Joshua's medication as we try to manage his pain in other ways.Two "Wish Granters" from the Make A Wish foundation came to our house this past weekend to talk to Joshua about his wish. We're waiting to hear if the corporateMAW agrees to grant the wish & once we know for sure, I'll share what Joshie wished for. The whole MAW experience is an emotional one. It's really fun & excitingto think about being able to do something for Joshua that we would not have been able to do without MAW, but it's painful to know that the reason he's receiving awish is that he has a life-threatening condition. Yes, we know there are LOTS of kids who have had a wish granted through MAW & then gone on to live intoadulthood, but even more children have not. Life-threatening means exactly that. Whether or not Joshua lives into adulthood remains to be seen; all we can see rightnow is the day-to-day stuff, which isn't very encouraging, and as such, MAW is a double-edged sword from an emotional point of view for my husband & me. That said,we do believe seeing Joshua's wish granted will be a wonderful experience for him & the rest of our family & we are looking forward to it.Sign My Guestbook Read TributesWednesday, February 16, 2011 7:55 PM, PSTWe got Joshua's pulse oximeter on Monday. This morning, he desatted 6 times, his oxygen level dropping as low as 66%. His heart rate has dipped to 48 beats perminute while he's awake & he stays in the mid-50's/low 60's when he's asleep. The respiratory therapist who brought us the machine set the parameters so that analarm would sound if Joshua's oxygen saturation dropped below 90% or if his heart rate went below 70 bpm or above 160 bpm. After spending a day with alarmspinging *a lot*, I reset the parameters to where the alarm doesn't go off unless Joshua's oxygen saturation drops below 80% or his heart rate drops below 50 bpm.Now, when an alarm sounds, we know Joshua needs a bit of a jostle &/or a verbal reminder to breathe in order to get his stats back into a normal range, but we're notdealing with the alarm sounding every few minutes. He *can* pop out of his apnea without help, but his oxygen level returns to normal faster if we give him a reminder& move him a bit, so that's what we generally do.Charley, Megan, Adam & I have decided (in just the short time we've had the pulse-ox) that we owe our pediatrician a huge 'thank you' for ordering it for Joshua. Itis allowing us to not have to be "on alert" because we know an alarm will tell us if he needs our help, and we really are grateful to have the ability to relax & not worry.We received a letter confirming Joshua's admittance to the Oregon POLST registry, which was sobering. POLST is an acronym for Physician-Ordered Life SustainingTreatment ~ it is a database that now contains Joshua's resuscitation orders & can be accessed by EMS or other medical personnel in the event Joshua stopsbreathing or his heart stops beating when he is not at "our" hospital in Portland. We have hot pink cards with his registry number that we are to keep with us any timeJoshua leaves the house in case it's needed. While I'm relieved that his orders can easily be accessed in the event they're needed, I am totally NOT relieved that Ihave a child who needs to have resuscitation orders in the first place. Like I said, it's sobering. We pray that those orders won't be needed for a very long time, ifever.Overall, Joshua is doing all right. He still throws up, has headaches & intermittant double vision & balance challenges in addition to his apnea & bradycardia, but he alsohas happy times every day & he is enjoying life to the fullest of his capability. Basically, nothing substantial has changed for the better, but neither has it changed forthe worse, and I'm working on being "okay" with that balance.Sign My Guestbook Read TributesSaturday, February 5, 2011 3:39 PM, PSTJoshua saw his pediatrician yesterday for a post-hospitalization follow-up. I'm still in the hospital with Bethany, so Charley brought Joshiebear to town & then weswitched places since I was the one in Portland with Joshua & could better answer the ped's questions.Just before coming to the hospital, Charley, Megan & Joshua had been at the grocery store and Joshua had a big apnea episode where he first got pale, then turnedgray-blue and slumped over. Charley got Joshua out of his wheelchair & he started breathing again, but they cut short the shopping trip & headed to the hospital,instead.At the ped's, Joshua was satting at 81% and at first, the nurse thought the machine wasn't working properly, but after putting the probe on her own finger & itimmediately registering 100%, she realized that Joshua truly was not satting well. On a good note, though, he's weighing 42 pounds and is 44.5 inches tall. :)Dr. S heard about the apnea episode at the store & the low sats in her office & announced that Joshua needs a continuous pulse oximeter with alarm, so she's orderingone for him. She told me that Dr. J, one of the peds up at Emanuel, had told her he didn't think a pulse ox was necessary at this time, but she disagreed with him &she would rather us know what is happening than be taken by complete surprise.Aside from that piece of unpleasantry, we both agreed that Joshua looks good & while the future is worrisome, he's okay right now & that's what we will focus on.Sign My Guestbook Read TributesFriday, January 28, 2011 10:24 PM, PSTBethie's got green pus coming out from her g-tube stoma ~ the GI doc told the ped that it would be "really rare to get an infection from this (the minortear of her skin)," but apparently Bethany didn't get that memo or maybe the GI doc (who is not the doc who placed the tube) doesn't realize she'simmunosuppressed. Rheumatologist is concerned about her labs & speculated that she may be converting from s-JIA to full-blown MAS. She's gettingantibiotics (which may have to be switched since they're not sure if she's got a MRSA infection or just a 'regular' one ~ she's had a rapid culture done todetermine that status, so we'll know in another hour) & IV steroids. The Portland docs are in close communication with the ped & they are going to TRY toget this under control here versus having to fly her to Portland.Sign My Guestbook Read TributesFriday, January 28, 2011 7:16 PM, PSTBethany is back in the hospital.She pulled at her g-tube yesterday & tore a bit of the skin, enlarging the hole, which then allowed formula to drain out the stoma around the tube. Problem is, thetract between her stomach & skin has only been healing for a week (since her g-tube was placed), so there may be openings along the tract for formula to drip into herperitoneum, too, which could cause an infection.She had labs drawn & went to the pediatrician's yesterday at the request of her GI doc & rheumatologist up in Portland and the results were "bad but not dangerous"according to her rheumatologist. She also lost 2 pounds since she was discharged, which is crazy since she has been getting the exact same amount of formula (32oz)each day that she was in the hospital. However, the Infectious Disease doctor said that Bethany's disease sucks up an incredible amount of energy (ie: calories), somaybe that's why she lost weight. Regardless of the reason, we were instructed to increase her to 5 cans per day rather than 4.This morning, she woke up writhing in pain & had a fever of 103.8 that went down to just 102.5 after getting tylenol. I put in a call to the GI doc & rheumatology & wastold to take Bethany back to the lab & the ped's. The results from today's labs were worse than yesterday's ~ her white blood cell count almost doubled & herinflammation markers were high & everything else was out of whack, too. That plus her pain & swelling in her hands & feet earned her a direct ticket to PICU, whereher condition is listed as "guarded".Many more labs have been drawn at the request of her specialists in Portland & we're waiting to get the results from those. No one is sure what is to blame right now~ her s-JIA, MAS or an infection from the g-tube incident, but I'll update again once they get it figured out.If you're the praying kind, please pray that this can be treated at our local hospital with the phone conferencing of the specialists in Portland. I am desperatelypraying that they let us stay here because while we're 45 minutes from home, at least we're close enough that Charley can come stay with Bethany and let me go hometo see our other kids.For my local friends reading this update, I unfortunately have to request no visitors since Bethany is getting chemo & steroids and therefore has a compromisedimmune system. As such, we have to minimize contact with people as much as possible.Sign My Guestbook Read TributesTuesday, January 25, 2011 8:51 AM, PSTI got a 'post-hospitalization' summary written & put on Bethany & Hannah's adoption blog, complete with pictures & a few videos for anyone who might be interested. you for all of the prayers & words of support & encouragement this past month. Knowing so many people were thinking about my kids & praying for them (andthe rest of my family) helped me to feel so much less alone during a very stressful time, which is something I am very thankful/grateful for.Sign My Guestbook Read TributesSunday, January 23, 2011 11:41 PM, PSTWe are home & beginning to settle into the routines of life again. Joshua is now using his wheelchair in the house for probably about 95% of his day. The deficitsfrom this most-recent cord detethering are making themselves known & while it's disappointing to see the losses, Charley & my philosophy is that "brain trumps legs" ~meaning that as long as his brain benefitted from the surgery (and it did), then it's worth the loss of function in his legs ~ so we will adjust to the new normal yetagain and keep moving forward. Really, what else CAN we do? Whine & cry & shake our fists at God for the path we're on? Okay, yeah, there's been some of that,but it only lasts a short while before we again sigh and say, "Okay Lord, we trust you. Even when this is hard." And yes, I will admit, this *is* hard. Even aftereverything I've already been through with my children in the past 8 years, these new diagnoses for Joshua & Bethany take the proverbial cake. It sucks and I amboth sad & angry that this is the new path we are being forced to walk, but I absolutely HAVE to believe that God is still in control & therefore He has a plan, andeven if I don't see what it is (I don't) and I don't understand what is going on (I don't), He does... but the truth is, even though I DO believe those things, thatdoesn't make it easy to accept & it doesn't make it hurt any less.Sign My Guestbook Read TributesFriday, January 21, 2011 3:10 PM, PSTBethany has been discharged & we are now at the Ronald McDonald House until tomorrow morning, when we will leave for home. Little Miss got her methotrexateinjection & one last tube feed before we headed downstairs to pick up her prescriptions & supplies and then we LEFT the hospital! Woo hoo!!!!Sign My Guestbook Read TributesThursday, January 20, 2011 4:05 PM, PSTBethie's got a PEG tube now & has gotten her vaccines for pneumococcal & influenza. While those are immunizations I would typically skip, the infectious diseasedoctor was adamant that Bethany receive them since, as she explained, if Bethie were to contract the flu or a pneumoccal infection in the near future, she would notsurvive due to her compromised immune status. So... she got the shots and was not happy about it.The GI doc showed me pictures from the upper GI and explained that even though Bethany's liver was overlapping her stomach a bit (her liver is still a bit enlarged),she was able to get the tube in. She also said the outside of Bethany's stomach had a cracked appearance, which could indicate inflammation, so she (GI doc) took lotsof biopsies of her stomach. I don't know what the significance of inflammation might be, but unless someone tells me to worry, I'm not going to spend time thinkingabout it. There's enough going on without having to borrow trouble. :)In a few minutes, she will start getting pedialyte through her new tube and after 6 hours, she'll start getting formula & we'll see how she does. Infectious Diseasehas signed off her case, as has Rheumatology, which means that as soon as Gastroenterology says she can be discharged, we can go home!!!Sign My Guestbook Read TributesThursday, January 20, 2011 7:54 AM, PSTIn about an hour, Bethany will be getting her g-tube & losing her NG tube. She'll also have an upper GI, with biopsies taken from her esophagas, stomach & intestineto evaluate for H. Pylori, reflux & any other abnormality.If there are no surprises, we will be going home on Saturday. I'll have been gone from home for 26 days, which is way too long for my comfort level. I hope to neverhave to be in the hospital with my kid(s) for almost a month again!Audiology finally got here yesterday to evaluate Bethany's hearing & found that her ears are so full of fluid she 'flat lined' on all of their tests. As a result, she'llhave to come back to get re-checked in 6-8 weeks. That will coincide nicely with Bethany's need to return to get her PEG tube changed over to a mic-key button (forher g-tube) & her follow-up with her rheumatologist and Joshua's follow-up with his neurosurgeon. I'll schedule the 4 appointments over 2 days, which will make it aquick trip up here.Not much else to report right now, but I'll update later, after Bethany's procedures.Sign My Guestbook Read TributesWednesday, January 19, 2011 2:26 PM, PSTFinally some good news: Bethie's labs are all trending in the right direction! That means the steroids are finally kicking in & chilling out her immune system. Yea! Also,there were no hemophagocytes in her bone marrow biopsy, so she does not need the big-gun chemo with hem-onc. She'll stay on "just" methotrexate & lower-dosesteroids (oral). YEAAAAA!!!!!!!!!Sign My Guestbook Read TributesTuesday, January 18, 2011 10:16 PM, PSTNo biopsy report today. Perhaps pathology has been slammed with a lot of work & that's why there has been no report from them yet. I don't know. Rheumatologydoc & I are hoping it'll come tomorrow. He's already treating her for MAS, but we'd like to know what the biopsy showed.She pulled out her NG tube again today and then, once we got it replaced, she would not stop grabbing at her face to try and rip the tape off and get the tube outagain. As a result, she got her right arm strapped to a board to prevent her from reaching her face. Let me tell you, that did NOTHING to endear the nurse or me toher for the rest of the day, but it did accomplish the goal of keeping her from yanking out her feeding tube again, so I consider it a win and totally worth her anger.More labs will be drawn tonight (2am... no joke) to see how Bethany's body is responding to the pulse steroids. She looked better today (though her attitude wasworse) and is moving more easily and without pain, but one of the odd things about MAS is that a kiddo can look like they're doing great ~ symptoms of their s-JIAdisappear & everything seems under control ~ and then they totally tank in a rapid decline that's very serious. So until we get lab confirmation that yes, her whiteblood cells & inflammation markers & triglycerides & LDH are moving in the right direction (whatever is proper for each factor), we aren't relaxing our guard.Assuming nothing surprising comes up, Bethany will have surgery on Thursday morning to get a g-tube placed. The original plan was to send her home with an NG tube &come back in a couple weeks to get the g-tube, but her risk for complications will be higher a few weeks out when she's even more immune-compromised than she isright now, so it was decided (between infectious disease & gastroenterology) to do the tube now versus later.In Joshua news, he's looking good, but it's an artificial "good" ~ meaning, as long as he gets his pain meds on time & we keep him hydrated enough, he can smile and situp at the computer to play games and push himself around the room in his wheelchair, but if we miss a medication dose by 30 minutes, he begins complaining of headpain, will retch (or actually vomit if there's anything in his stomach) and needs to lay down for awhile to feel better. I'm happy that we can keep him comfortable andfeeling good enough to play computer games or legos, but I'm not fooled into thinking he's fine now because I know better.His walking took another hit with the latest detethering. He's not doing much of it at all, and when he does walk, his gait is obviously different than it was presurgery.I don't really care; protecting his brain is more important than preserving the function in his feet or legs. It's just something we've noticed, so I'mmentioning it. He also has lost all sensation in his booty. He can't tell when he's had a bowel movement anymore, so we're often surprised when we go to change him.Before surgery, he had no control over when he'd go, but he was aware that he was & would let us know so we could change him immediately. Now it's a matter of usnoticing via smell or when we open his diaper. Again, not a big deal in the grand scheme of things, but it's another "new normal" to recognize and adapt to.The one HUGE thing that has changed for the better is that I have not noticed him turning blue ~ having apnea episodes ~ while in his wheelchair. I know those willreturn again once his cerebellum is again pressed against his brain stem, but it sure is nice to not be seeing them NOW and I am happy that he can be in his wheelchairfor more than 20 minutes without being completely miserable. That's a huge gift right now in light of everything else that has been going on with both him & hissister.Sign My Guestbook Read TributesMonday, January 17, 2011 10:08 PM, PSTToday started way too early, at 4:15am when the nurse came in to draw labs off of one of Bethany's IVs, only to realize after 15 minutes offlushing first one & then the other with saline that neither was going to allow the drawing of blood. By the time she came to this conclusion,Bethany was wailing (even though the nurse hadn't touched her skin at all and hadn't done anything to cause her pain), which woke me.I had to hold her down while two nurses worked to find a usable vein (not at all easy in an extremely-anemic child) and obtained the 8ml of bloodnecessary for the labs that had been ordered. I know that doesn't sound like a lot of blood, but since Bethany's hemoglobin is so low, any amounttaken worsens her anemia. Anyhow, after they got the blood, one of the nurses casually announced that we were getting a roommate this morning& she was going to send housekeeping to clean the side of the room that Joshua had been occupying. Okay, no big deal, I figured... I mean, I dislike having to have aroommate since sharing a tiny hospital room with strangers who also have a sick kid is not my idea of fun, but when there is no other choice, I suck it up. I made surethere was nothing of ours on the side of the room that would belong to the roommate and then I laid back down on my cot to attempt to get some more sleep.Fifteen minutes later, housekeeping showed up. For those who aren't familiar with hospitals, let me tell ya, housekeeping isn't super quiet, even when it's 6am andthere is a child in a crib & a mother on a cot trying to sleep. So, needless to say, I didn't get back to sleep. And THEN, as soon as housekeeping was finished, thefamily from next door was moved over into the room. Why? I have no idea. Yes, their kid also has colonized MRSA, so he wasn't infectious to Bethany nor her to him,but I couldn't understand why they were moving him over since HIS roommate obviously had MRSA, too.Anyhow, it was just before 7am when they arrived and it was obvious they were up for the day. They were loud & the child was unhappy & the end result was that Igave up trying to sleep altogether. Definitely NOT an auspicious beginning to my day, though Bethany finally did get back to sleep and I was thankful for that! At9am, the roommate got discharged to go home and once again, I was left trying to figure out why on earth they'd transferred him into our room when they knew he'dbe leaving in 2 hours. Regardless, it was blissful to have the room to ourselves again and I am praying no one else gets moved in for the duration of our stay.The rheumatologist came in & said Bethany's labs were not doing what he expected them to. All of the lab values from the morning's blood draw hadn't come in yet,but her white blood cell count had dropped substantially & other values were "funky," as he put it. As such, he decided to wait on moving Bethany to oral steroids andinstead said he would begin giving her "pulse steroids," or high-dose steroids at 8 hour increments throughout the day/night. Then he said he'd be back to talk to memore after clinic was done.Bethany slept until 11:30am, saw PT for a short session that she did not enjoy but which was important for assessing the mobility of her joints now & helping to keepthem from losing range of motion (for the record, her wrists & shoulders are still limited in range & sore, but her hips & knees are not painful anymore).At the end of the working day, Dr. K came back and said that the bone marrow biopsy results were not in yet, but based on the lab trends he's been watching for thepast week, Bethany does have Macrophage Activation Syndrome as a complication of her s-JIA. She will continue to get pulse steroids (methylprednisolone, aka solumedrol)at high doses, as well as methyltrexate (the chemo drug). When the biopsy results are available, it can be determined the course of action ~ if there ispresence of hemophagocytes, then hematology-oncology (hem-onc) will take over her case. If not, then rheumatology will continue their course of treatment. Thedifference between the two protocols is the use of etoposide, a bigger-gun chemo drug. Hem-onc uses it and rheumatology does not. Don't ask me why; I don't know.I kept holding off posting an update today because I was hoping the bone marrow results would come in and I'd be able to give a more-concrete explanation ofeverything, but what I've shared is all I know tonight. As always, I'll update when I know more, and thank you for the continued prayers for both Bethany & Joshua.Also, I must take a minute to thank all of the girls from BGGB for the incredible cookie bouquet they had delivered (picture at the top of this post)! It is SO cute &omigosh, the cookies are phenomenal (soooo yummy)! I was so touched by your gift, ladies... thank you very, very much for caring & praying & for sending something sosweet (literally) to brighten our day here. You made Adam, Joshua & me smile (I think Joshua was imagining biting the head off a nurse or his neurosurgeon, LOL) andall of the nurses & doctors who came in thought the bouquet was totally cute. Thank you thank you thank you!!!!!Sign My Guestbook Read TributesSunday, January 16, 2011 2:34 PM, PSTBethany is a total grouch today. She's grinding her teeth incessantly & just griping a lot. I understand it's the steroids, but listening to a cranky kid who doesn'twant to be messed with & therefore gets even more ticked off when someone tries to play with her or hold her or otherwise comfort her gets old after hours &hours. Yeah, that's probably not very PC to admit, but oh well; it's the truth.Joshua has started throwing up again ~ he eats & then throws up. That didn't take long to start up once more, huh? We'll go back to having him on a slow continuousfeed so he doesn't lose weight & adding in zofran for nausea in addition to the erythromycin he regularly gets, but it's really disappointing to me that 26 days out ofthe last 41 spent in the hospital & 4 surgeries during that time failed to give him more than a few days' reprieve from puking. Historically, vomiting has always beenJoshua's first sign that his cerebellum is pressing against his brainstem; it's depressing to me to see it's happening again so soon after Dr. W decompressed his chiari.A friend shared a verse on facebook that I have always liked and found comfort in: Isaiah 41:10 "Don't be afraid, for I am with you. Don't be afraid, for I am yourGod. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness." It helps me to know that regardless of what I seehappening or what man might say is or is not going to happen, God is the One who is in control.Sign My Guestbook Read TributesSaturday, January 15, 2011 7:53 PM, PSTBethany has had 48 hours of steroids & early this evening, she got her first shot of Methotrexate. Aside from being more irritable than usual, she seems to feel alittle better. She's sat up a few times on her own, even, which is definitely a step in the right direction.I had thought that doing Methotrexate wouldn't be a big deal ~ after all, it's just a little injection once a week, right? Imagine my surprise when the oncology nursecame in with a box of "chemo gloves" & very seriously explained what I had to do to give Bethany her shots each week: double gloves (2 pair) & ensure that not evenone drop gets anywhere other than inside her thigh, syringe disposed of in a 'sharps' container & the 'sharps' container gets emptied at the hospital. Then, for 48hours after giving the injection, I'll have to wear double gloves for all diaper changes & her diapers will be put in a special "chemotherapy waste" bag that will have tobe disposed of at our local hospital & her clothes will have to be washed separately, too. It is really crazy to me to think that this drug is SO toxic that it requiressuch extensive precautions, yet we're injecting it into my tiny daughter's body. If it helps to modulate her immune system like it is supposed to, though, then it will beworth it. Methotrexate has a less than 50% efficacy rate for systemic JIA, but it's the foundation of treatment for s-JIA, so it's the drug we're starting with (inaddition to the Prednisolone ~ steroid).Joshua is feeling better today. Adam & I finally got on top of his pain last night (I gave him an extra half-dose of his meds) and we've kept him on them ever since, sohe's functioning with a manageable headache & was pretty darn happy most of the day. I think the new shunt setting helped, too, because he is able to sit up for acouple of hours without complaint. He's still having the other symptoms that first brought him to the hospital, but he's definitely recovered from the surgeries thathe had & is back to being "okay" again.A friend (used to be Joshua's PT) gave me the brilliant suggestion of "growing" Joshie's wheelchair so that the back of his seat gets moved as far back as it can goand then buying a triangular piece of foam that can be used as a wedge so that Joshua can recline to 75-80 degrees in his chair & thus avoid desatting while sittingthere. It is practical advice like this that I SO greatly appreciate. I love that I have friends who want to help make Joshua's life more comfortable & give me ideasthat will work to achieve that goal.Bethany has another day of IV steroids and then she'll get changed over to oral steroids on Monday. We'll get the results of her bone marrow biopsy on Monday, too,and she'll have a consult with a GI doctor regarding the g-tube. The infectious disease doctor informed me that if Bethany's labs don't look good enough, she won'tbe able to get the g-tube during this hospitalization (because she wouldn't heal well & would wind up with an oozing mess at the g-tube site). If placing the g-tubeisn't possible, then she'll go home with the NG tube as a temporary way to feed her while we wait for her labs to improve, at which point I'll bring her back to thehospital to get the g-tube in an outpatient procedure. That would work out with doing follow-up with her rheumatologist, too. So... however it works out will be fine.I'm just relieved that we'll have a way to feed her that isn't going to be stressful.Sign My Guestbook Read TributesFriday, January 14, 2011 6:26 PM, PST*Joshua saying "hi" to his baby sister.*Bethany is being started on 72 hours of high-dose steroids (which will then be converted over to oral steroids that she will take until she goesinto remission) and tomorrow she will start on methotrexate, which will be administered as a weekly injection that I will be taught how to giveher. The ID doc told me she would be irritable & hungry on the high-dose steroids... I'm praying she does not have the same rages that Joshuadoes when he is on steroids. If she does, that will make for a very loooooong 72 hours!The rheumatologist, who I really like thus far, discussed with me Bethany's treatment and his agreement that once she's stablized with medication, she needs to get ag-tube. He put a note in her chart stating his support of the procedure being done prior to her discharge, which I greatly appreciated him doing. It would make thingseasier for my family if we could get Bethany's g-tube done during this hospitalization versus going home & having to turn around and come back up for an outpatientprocedure. The infectious disease doctor is the leader of Bethany's team, so she'll have to order the GI consult, but I don't anticipate it being a problem since she(ID doc) is the one who put the NG tube in so that she could pour calories into my tiny girl. s-JIA puts a kiddo into hypermetabolism & Bethany is burning up a ton ofcalories each day, so the need for a tube is obvious when you consider she will barely drink from a bottle & she is unable to eat any solid food yet.As for her labs, everything came back showing the highs & lows where they were expected for a child with s-JIA. Also as expected, there is no news about the biopsyyet.Sign My Guestbook Read TributesFriday, January 14, 2011 3:02 PM, PSTThe palliative care doctor came in to talk to me. What was decided by the doctors up here was Joshua does not need a pulse ox yet. They said that since his big desatsoccur when he's upright, there will be someone watching him & we can stimulate him to breathe if he needs help (I guess they assume that since I have a lot of kids,someone will always be watching Joshua when he's awake. <roll eyes>). When he starts requiring more effort to stim him to breathe, we'll know things are progressing.When he gets to a point where he's having big desat episodes while laying down/sleeping, then a pulse ox will be appropriate. Of course, I don't know how are we toknow he's desatting when laying down/sleeping if he has no pulse ox & we aren't sitting there watching to see if he turns blue, but perhaps that's too logical. I am notgoing to worry about it ~ when we get home, I'll ask our pediatrician to prescribe a pulse ox. I know she'll get it for him if she can (ie: if insurance will cover it). If shecan't get it, we'll just buy one.Jenny (neurosurgery) came in & reset his shunt to 2.5 (to slow the flow more). This is an attempt to lessen his headache when he's upright AND to lessen thedownward traction of his cerebellum, which is theorized to be the cause of the headaches. If the adjustment doesn't seem to help, then I'm to bring him to theoffice to have it put back to 2.0 ~ since we'll be here with Bethany, it won't be a hassle (in theory) to pop over to Dr. W's office to get that done. She also said thatif his symptoms get worse, to give her a call & Dr. W will try decompressing him again, albeit more aggressively. So at least we have that option for trying to helpJoshie in the future.The IV team is coming to de-access his port and then he will be discharged. He'll sleep at the RMH with Adam while I sleep up here with Bethany and then both boyswill come up during the day to hang out, so there won't be a logistics issue at all.As for his pain, well.... I brought his Lortab up here with me and that & Neurontin are what we've got to try and manage it with. He is laying in bed right now, moaningthat his head hurts (he's had Lortab & ibuprofen), but there isn't anything else we can give him right now.Okay, I have to go help the IV nurse deaccess him. I'll update again when I have information about Bethany's latest lab results (should be sometime today since shehad labs pulled when she was under sedation for her bone marrow biopsy.Sign My Guestbook Read TributesFriday, January 14, 2011 11:52 AM, PSTBethany is having her bone marrow aspiration & biopsy right now. They'll be drawing more labs while she's asleep, too, and I'm grateful they're doing that while she'sout so she doesn't have to feel anything.Last night, she began desatting, with her oxygen level dipping as low as 76%. She'd get back up to 95%, but drop back down again. I don't know why that is happening& so far no one has come in to talk to me about it, so maybe it's not a big deal. It WAS interesting, however, to note the difference in the nurse's reaction toBethany's desats versus Joshua's. With Joshua, the alarm gets silenced & that's it. With Bethany, the nurse comes rushing in, moves her to stimulate her to breathe& gives her oxygen (when needed). I guess the difference in approach is due to "fixability". They can't fix Joshua's apnea episodes, but they can deal with Bethany's,so they try. Joshua turns blue when he stops breathing & desats, but Bethany keeps breathing ~ her sats just drop ~ so maybe that plays into it, too. I "get that" onan intellectual level, but emotionally, it's like a knife being turned in my heart.I am really struggling with the idea of leaving with a child whose symptoms haven't improved the entire time we've been here. I'm especially stressed about leavingwithout any kind of "game plan" for how we're supposed to handle things from here on out. I know that if the doctors up here don't help, our pediatrician at home willcare enough to want to do something, but it still sucks that we had that family care conference and everyone agreed that we absolutely needed an outline, someparameters, for what symptoms needed to be dealt with (and how they should be dealt with) and what things couldn't be fixed so we'd need to treat supportively, butwe couldn't expect them to go away. What good does it do to have everyone agree and then have no one DO anything to help us figure out how to live with this newnormal? Again, I intellectually understand that no one knows with certainty what is going to happen or when it will happen, but emotionally, it hurts to realize thatthese doctors I have respected for years are ready to walk away from the situation by saying (essentially), "Well, we don't have a diagnosis for what's happening toJoshua, so you take him home & deal with it the best you can.... we aren't going to give you any advice for what you can do to help him have a good quality of life. Sorry'bout that. Bye!"Sign My Guestbook Read TributesThursday, January 13, 2011 3:22 PM, PSTBeen a bit of a frustrating day.Bethany got transported to Day Surgery for her biopsy, only to have the anesthesiologist tell Charley & me that he couldn't be the doctor for her case because sheneeds an anesthesiologist who is trained for cardiac patients. Don't even ask me what the difference is... I didn't realize there were different levels of qualificationsfor anesthesiologist. Anyhow, the guy didn't seem to realize ahead of time that Bethany had a heart condition even though it's in her chart notes & is prominentlydisplayed as part of her diagnoses. End result was that Bethany got taken back to her room & we were told that she'd have the biopsy sometime later in the day.Three hours later, Bethany's ID doctor was frustrated with the anesthesiologists and told them they had to commit to a time that they were going to do the biopsybecause her patient was a tiny girl who could not go all day without food & they cannot start treatment for her until after the biopsy is done. The decision was madeto do the biopsy tomorrow & start Bethany's feeds again so that she gets some calories today. She also was given some pain medication to make her morecomfortable.The kids are now in the same room, which makes all of this a fraction easier to deal with.They're moving toward getting Joshua ready for discharge and I find myself protesting (in my mind), thinking, "Wait! He is still desatting when he's sitting up andhe's got double vision and his head hurts and his balance isn't great! How can you discharge him when he's so obviously NOT okay?" And then I remember that theycan't fix any of those things... it's our new normal... and then I feel really, REALLY sad.We're trying to determine whether or not Joshua will come home with monitors & oxygen. Half of his doctors think it's a good idea, as they want us to keep track ofhow often he desats during the day & at what percent he begins breathing again & they feel oxygen would be a good thing to have in case it's needed to get his O2levels back to normal after a big desat episode. The other half think it doesn't matter if we have monitors for Joshua because there isn't anything we can do when hedesats & they say there's no reason for us to be hooking him up to monitors that will only cause us to worry. For me personally, I think I'll worry MORE if I don'thave a clue what is happening with him other than noticing, "Oh hey, he's turning blue.... c'mon, Joshua, breathe!" I'd like at least a pulse ox so we know how low hisdesats take him. It'd be nice to know ahead of time that gee, his desats have him going to 70% or 60%... it would give us a clue that things are progressing. I don'twant to take him to the doctor's, have him desat while there & find out that oh wow, he's now desatting to 60% when we've been thinking the lowest he goes is 80% -85%. So... it'd be nice if they could all get on the same page. This is one drawback of having a lot of doctors involved in one child's care ~ they're bound to disagreeat times & then I'm left wondering who's going to 'win' the discussion & what that will mean for my child.Sign My Guestbook Read TributesWednesday, January 12, 2011 9:26 PM, PSTI'm sorry about not explaining anything in my last update. Charley came up with Emily & Sarah (2 of our daughters) and things were a bit busy, but I wanted to put upa quick mention of what was going on, so I tossed out what we'd been told by the rheumatologist, hematologist/oncologist & infectious disease doctor without thinkingthat most people wouldn't know what I was talking about.Now that Adam has taken the girls down to the Ronald McDonald House to play for a bit before going to sleep (Charley is in with Bethany, who is asleep, and Joshua isin bed beside me playing with legos), I can take more time to explain what's going on. :)As I understand it (and please keep in mind that what I'm going to share is newly-acquired knowledge, so I may get a detail or two incorrect and have to clarify in thenext few days), Systemic Juvenile Rheumatoid Arthritis is an autoimmune condition where the body's infection-fighting cells go a little crazy and begin attacking thejoints and (sometimes) organs and bone marrow of their owner's body. Systemic JRA is the most uncommon and 33% of children with this form of JRA never achieveremission & can be very difficult to treat. We are hoping, of course, that Bethany will be one of the 67% who DO achieve remission & are not significantly impacted bytheir JRA on a day-to-day basis. This condition can be treated, but not cured. It is lifelong (chronic).MAS is Macrophage Activation Syndrome. It is, essentially, where the macrophages (large white blood cells) that usually eat up/destroy the bad stuff in our bodies gototally crazy & begin eating pretty much everything. That's not a 100% perfect explanation, but it's the easiest one. It is a potentially life-threatening complicationof Systemic JRA (which, incidentally, is also known as Systemic Juvenile Idiopathic Arthritis).Bethany has every marker for MAS. The only one we don't know about yet is the presence of hemophagocytes (cells that destroy red & white blood cells & platelets) inher bone marrow, which is why she is having a bone marrow aspiration & biopsy tomorrow. If the test shows she has hemophagocytes, then it is my understanding thatshe will receive a diagnosis of MAS.The treatment for MAS is high-dose corticosteroids & cyclosporine (immunosuppressants). If that does not work to chill out the macrophages, then the treatmentwould involve chemotherapy & a bone marrow transplant.So... for obvious reasons, we are praying that Bethany does not have MAS. Her having SJRA (in addition to Down syndrome & Autism & a heart defect) is more thanenough.As for Joshua, we got him into his wheelchair and within 15 minutes, his coloring had paled & he was asking to get back in bed. We forced the issue & made him stay inhis chair sitting at 90 degrees and within another 20 minutes, he had a desat to 85%. He was growing increasingly uncomfortable & the nurses & I were confident wewould get an even bigger desat if we kept him in his chair, but then his head pain was so severe he began sobbing & the nurses cut short the trial, put him back in hisbed & gave him some fentanyl & lortab. Tomorrow we will try again. The reason we are trying to get him to desat "big" is to see how long his brain will allow him tostop breathing before it kicks in again. So far, the lowest he's gone is 74%. I think everyone here knows that the desats are occurring, but no one has decided yetwhat the parameters are going to be regarding at what point we would administer oxygen. During a desat episode, oxygen is useless because Joshua isn't breathing, sohe wouldn't be inhaling the oxygen. However, after he begins breathing again, if he is really low in O2 saturation, oxygen would be necessary to get him back up towhere he needs to be (95% or greater) in order to avoid brain damage.Joshua received his last dose of vancomycin tonight and the plan is to see if he begins spiking fevers again 24+ hours from now. If he doesn't, then he should be inthe clear as far as infection goes. Thus far, nothing has grown in ANY of his cultures, which has the infectious disease doctor very confused. With his white bloodcell count as high as it was, he SHOULD have grown something in at least one of those cultures (blood, urine, CSF), but we all agree that we're not going to question itif he doesn't have any more fevers. However, if he does start having high fevers again tomorrow night or the next day, then the infectious disease doc said we'll haveto start all over again in trying to locate the source of the infection. Soooooo...... we're praying for NO FEVERS!!!The recap, then, is to pray for no MAS for Bethany and no fevers for Joshua. Bethany's bone marrow aspiration/biopsy is at 10am tomorrow and it will take about 24hours to get the results. There is a tiny chance we MIGHT have some information by tomorrow night, but it's more likely we'll hear the results on Friday.Oh... one more thing... Bethany's abdominal ultrasound today showed enlarged liver & spleen, inflamed blood vessels leading to & from her liver and something with herkidneys but I can't remember exactly what it is (I'll ask tomorrow). Her CT was normal, as was her echo, which showed no signs of endocarditis.I'm off to bed now because The Joshua has requested I come lay down with him. There's something about being in the hospital that renders my son unable to fallasleep without a Mommy by his side. LOLSign My Guestbook Read TributesWednesday, January 12, 2011 4:26 PM, PSTRheumatology & hem-onc have been here. They are 90% sure Bethany has systemic juvenile rheumatoid arthritis. They are still suspicious for HLH, as well, or thepossibility that the JRA is moving into MAS (a form of HLH), so tomorrow she will have a bone marrow aspiration & biopsy to get a better idea of what the cells in hermarrow are doing.Sign My Guestbook Read TributesWednesday, January 12, 2011 12:45 PM, PSTBethany will have an abdominal ultrasound this afternoon to check for possible tumors & consults with other specialists throughout the day. Joshua will have anophthalmology consult to determine what, if anything, we can do to help with his intermittent double vision & "fuzziness" & we will get him in his wheelchair to see if wecan cause him to desat & if so, will he start himself breathing again without help.Sign My Guestbook Read TributesWednesday, January 12, 2011 9:54 AM, PSTThank you for praying ~ when we took Bethany to the treatment room, the nurse began searching for a vein & I asked if she would please try to pull the blood fromher IV. She told me that it wasn't going to work because she'd tried to get a backflow when she was in her crib and it didn't happen. I implored her, "Please try?"She then agreed to try and was absolutely shocked when the blood flowed easily into the syringe. She quickly pulled off 12ml of blood for the rest of the labs anddidn't need to stick Bethie at all! She said, "I can't believe we got blood out of that line!" and I replied, "Prayer works." She was quiet for a moment and thenresponded, "I can't argue with that." :)So thanks for praying! It worked and Bethany was spared an extra stick.Sign My Guestbook Read TributesWednesday, January 12, 2011 5:10 AM, PSTIt's been a rough morning already and it's barely 5am. Joshua has another fever, as does Bethany (hers is worse). Bethany keeps dropping her oxygen saturation leveland is getting blow-by oxygen (which she hates). Her IV won't draw for labs so after she receives a fluid bolus & her fever is down, she has to go to the treatmentroom to get another 6 tubes of blood drawn. I came here to ask people to pray for a 1-stick procedure since she has been REALLY hard to get a vein and with herbeing so anemic it's going to be even harder.Joshua had blood drawn off his port to culture for labs, which of course he slept right through (once again I have to say how much I love having that central line forhim). He had a huge vomiting episode last night that led to uncontrollable retching & needed zofran to break him out of.I am totally exhausted after less than 3 hours of broken-up sleep and I am praying today smooths out. Please pray that it does.Sign My Guestbook Read TributesTuesday, January 11, 2011 7:21 PM, PSTI'm sorry about no update for so long. It's been a VERY busy 5 hours since Bethany got here. She had a CT scan, an echo(showed no endocarditis), got 6 vials of blood drawn, got an NG tube placed, had her nose & booty swabbed & is now in hercrib settling down to sleep.Dr. Mato, the infectious disease (ID) doc, said Bethany's inflammatory markers on her labs are off the charts high. Therewas one test that the normal value is between 100 & 300 and Bethany's level is 3,000. She is having "third spacing," whichis when the blood vessels leak and allow fluids out of the vessels into the surrounding tissue. As a result, Bethany is puffy,especially in her hands and feet. Dr. Mato said whatever is wrong with Bethany is potentially very, very serious. Theconditions she is most concerned about (that are possible Bethany has) are a hematologic disorder abbreviated HLH ~Hemophagocytic lymphohistiocytosis ~ which basically has the body destroying its own cells... or lymphoma/leukemia/someother malignancy... or a rheumatological condition (she didn't specify a name). She also said it is possible it's anautoimmune condition that is untreatable, but she didn't think we needed to get into that today.Bethany will have a bunch more labs drawn tomorrow and will be seen by hematology-oncology, rheumatology, and by Dr.Mato again. She said that right now, we have a very sick little princess on our hands and we are going to take things onehour at a time, adjusting treatment and plans as new information is obtained (from lab reports and other testing).Her hematocrit dropped 8 points overnight and she is very anemic, a condition not being helped by how much blood is beingdrawn. After all of her labs are done, she will get a blood transfusion. As soon as the labs show she does not have abacterial infection of any kind, she will get a PICC line. There is a strong possibility she will need a bone marrow biopsy.She has low oxygen saturations (hanging out at 89-90%) but that is attributable to her heart condition, I think. I'll have toask to be sure.So... that's where we are at tonight.Thankfully, Joshua remains stable. Today is the only day in the past 15 that he has not had a desat episode all day. GodKNEW Joshua would need to be stable & He made it happen. I have no doubt and I'm thankful for that. Bethany absolutelyneeded me to be able to focus on her and since Joshua was stable and Adam is taking care of him, I was able to do that.I'm exhausted but I've been okay despite everything going on. I'm thankful for the prayers that have been said for Bethany& Joshua and for the peace that surpasses human understanding, which has surrounded Adam & me all day. We know Godis in control & He's going to work everything out according to His purpose. Adam & I have been asked repeatedly todayHOW we are getting through this & each time, we answer, "God. He is giving us the strength & peace of mind & ability tohandle anything that is set before us." It may sound trite, but it's the truth. Without Him, I'd be a crumpled mess of tears &fear, but with Him, I can face each hour & whatever comes with it. I'm so grateful to know Him & to be able to trust that Heis holding me through this difficult time.Sign My Guestbook Read TributesTuesday, January 11, 2011 11:53 AM, PSTBethany is en route to Portland. She should be here sometime around 1pm (PST). I am praying she sleeps during the trip so that she doesn't realize she is alone withstrangers. I am praying, too, that the paramedics are kind to her & take good care of her. It breaks my heart to know my baby girl is alone without me or her daddyfor even a couple of hours at this time. She was left alone at the hospital when she had her two heart surgeries in Ukraine and she spent every day of her life in theorphanage in a crib, alone & not interacted with. I don't want her to be scared... I am consoling myself with knowing that THIS time, she has a family that loves herand will take care of her. I am extremely anxious to hold her again (it's been 15 days) and to get a diagnosis of what is making her so sick.Joshua is still stable (thanking God & modern medicine for this). He is getting regular doses of tylenol & motrin to keep his fever at bay, rocephin once a day &vancomycin 4 times per day to address the infection, erythromycin to keep his continuous feeds digesting, neurontin for the neuropathic pain in his legs (which iscompletely controlled by the med), and lortab every 4 hours for pain plus intermittant doses of fentanyl and/or morphine, as needed, for headaches that aren'tcontrolled by the lortab alone. He's stable, but still medically fragile and being treated as such. Still, it's encouraging to see him starting to feel better and everyonetaking care of him here is hopeful that he's turning a corner toward getting well enough to go home. My understanding is that he will get discharged with an apneamonitor & pulse ox to be used daily and oxygen that we will use only if it's needed.Sign My Guestbook Read TributesTuesday, January 11, 2011 7:46 AM, PSTJoshua's fever is down, his heartrate is back to normal & he is sleeping peacefully right now.Charley called to tell me Bethany has tested positive for MRSA, which means she will not be able to room with Joshua once she's transferred here. The plan is to puther in a room next door to Joshua, but that will take some moving around of kids, so please pray the nurses here (who are trying to help in any way they can) are ableto make this possible. Being in adjoining rooms will be easier than if Bethany is halfway across the peds unit.Charley also told me that once they gave Bethie some ibuprofen, her fever went away & her rash, which had exploded all over her body once they stopped treating herfever (they wanted to see how high it would go, which makes zero sense to me, but I'm not there, so I figure I must not be getting the entire picture) is about 75%better. She is also sleeping at this time, according to my husband.I'll update as regularly as I can. The updates may be short if I'm lacking time, but I will do my best to not leave people hanging because I know I hate it whensomeone does that to me. Thank you for all of the prayers and support and encouragement.... maybe it's cheesy to admit it, but it does help. At the very least, I don'tfeel like we're completely alone in all of this and it helps to know others care. So thanks for your comments and prayers.Sign My Guestbook Read TributesMonday, January 10, 2011 9:30 PM, PSTSorry for the delay in updating. My computer tried to die and Adam had to fix it. I had a big update but lost it. I will try torewrite it later tonight, but in the meantime, here's the gist:Joshua's got a high fever (104.6) even with meds. His heartrate is 178 and we need it to slow down NOW. He had thelumbar puncture, his pseudomeningocele was drained (the accumulated CSF from his dural leak), had a nasal wash (to get aculture from there) and had his port de-accessed & re-accessed all while he was under sedation. He came out and spent anhour in recovery with his vitals all over the place. Now his heart rate is crazy because of his high fever, but everything elseis stable.Bethany was admitted to the hospital 45 minutes from our house and she will be flown to Portland tomorrow. The infectiousdisease doctor here is concerned about a possible malignancy (leukemia or something else) or a rheumatoid problem. She'llcome up here and see cardiology, rheumatology, infectious disease, pediatrics, hematology & possibly oncology (this listcame from a nurse up here who is helping to coordinate things on this hospital's end ~ to make sure Joshua & Bethany canbe in the same room or next door to each other if Bethany is deemed contagious).Charley will not fly up with Bethany; instead, he'll go home & spend one day getting the kids at home situated and then he'lldrive up to Portland, spend a day or two here (hopefully we'll find out Bethany's diagnosis while he's here) and then go backhome so he can return to work. I will meet Bethany at the ER entrance when she arrives at the hospital. I'm praying mylittle girl sleeps on the plane and isn't terrified at being without anyone she knows.I will update as I can. If my computer continues to be problematic, then Charley will bring his laptop for me to use.We still don't know what is causing Joshua's infection. He's now on 2 powerful broad-spectrum antibiotics while we wait tohear from the lab about what bug (if any) needs to be eradicated. Once we know, they'll tailor the antibiotics accordingly.Yes, I'm overwhelmed. I'm beyond stressed and worried about my children ~ all nine of them. I know God has a plan andHe is in control, but that doesn't take away my concern for my kids. Please, if you pray, pray that Bethany won't need to gointo PICU because this will be a lot easier to manage if both kids are in the same room versus on different units.Sign My Guestbook Read TributesMonday, January 10, 2011 2:46 PM, PSTCharley called ~ Bethany's white cell count has gone up again despite the antibiotics she's been on. She's currently at the radiology clinic to get a chest x-ray to seeif her latent tuberculosis is now active or if she has some form of pneumonia. The 'substitute ped' (not our regular doc) is doing the tests that hematology will wantand the tests that infectious disease up here at Emanuel want done. I don't know any more than that yet.Sign My Guestbook Read TributesMonday, January 10, 2011 12:26 PM, PSTJoshua's LP got pushed back to 3:30pm because they're running behind in sedation. His fever is back up to 105.2 and more blood cultures are being drawn. His headwas hurting so badly it caused him to throw up. The neurologist came by, as did the palliative care doctor & pediatrician. Neurosurgery will do the LP. While he'sknocked out, a member of the IV team will de-access & then re-access his port (they do it every 7 days) and a nurse will do a nasal swab test where she'll put saline uphis nose & then suctioin it out to see if anything is growing in there (she said it's like a washing machine through the nose, so it's lucky we can do it while he's asleep).We should know by tonight (hopefully at latest) what is causing this infection.I still haven't heard anything from Charley about Bethany. I did call his cell phone, but he didn't answer, so he's obviously not in a place where he can talk yet.Sign My Guestbook Read TributesMonday, January 10, 2011 9:45 AM, PSTOnce again, tylenol + motrin broke Joshua's fever & he was able to sleep more deeply, and once again his temperature is climbing. He will have a lumbar puncture in 1hour to collect a sample of CSF for testing. After the LP, he'll get started on broad-spectrum antibiotics and then, after the doctors determine what is growing ineither his blood, urine or CSF, they'll tailor the antibiotics to be specific to the bug that is causing this infection.Bethany's appointment is in an hour and I'll update again later today with information about both kids. Thank you to everyone who is praying.Sign My Guestbook Read TributesMonday, January 10, 2011 5:35 AM, PSTAt 1am, Joshua's fever was down to 100.1 as a result of medication and we were able to go to sleep. At 4am, his temperature was back up to 103.2 and he got a doseof motrin. At 5am, his temp was up to 105.2 and he got tylenol and blood drawn for more labs. Now, at 5:30am, he's getting more blood taken from his port (I'm sothankful he has this right now so that he doesn't have to get poked repeatedly so early in the morning).Neurosurgery has been called to get him in for a spinal tap to get a sample of CSF. He is sleeping fitfully beside me in a cold room that has had the heat turnedcompletely down in an effort to help cool him. His heart rate is in the 160's, his respirations are up to the mid-30's and he is obviously one very sick little boy. I wastold his white blood cell count is elevated, so this is not a brain stem issue (which actually is a relief, though I'm not happy that he's sick). The question is what kindof infection he has and I am praying and asking for prayer for an answer for that question.I'll update when I know something.Sign My Guestbook Read TributesSunday, January 9, 2011 9:24 PM, PSTFever is up to 102.9. Blood & urine cultures were sent down to the lab a couple hours ago & now we'll wait to hear if anything grows out.He's getting fentanyl & morphine to control his headaches, tylenol & motrin (alternating) every 2 hours, plus his usual meds. His CSF leak gets bigger & smallerdepending on his position.The ped on-call just came in and did an exam & told me that she is pretty confident this is not a viral infection, but something bacterial. She wants neurosurgery toobtain a sample of CSF to see if this is a meningitis versus a line infection. They'll need to do a lumbar puncture (spinal tap) and she admitted she doesn't know howthey'll get it in light of Joshua's recent surgery & CSF leak, but she's still going to push for it before starting IV antibiotics. It's important to know where theinfection is coming from because they're treated differently depending on what it is. If it's his central line that's infected, he'd need it removed, then IVantibiotics to clear the infection, then back to the OR to put a line put back in. Sooooo.... we'll see which way this goes.Oh, and in case it's not obvious, Joshua won't be discharged in the next few days.As for Bethany, my oldest daughter, Megan, took some pictures to show me just how miserable my baby looks and dang... it's sad. It's obvious that she does not feelgood at all. I am hoping that tomorrow will reveal her to need just IV antibiotics or something simple like that. The alternative ~ leukemia or something similarlyserious ~ scares me in a way I can't really articulate tonight.I'll update on both kids tomorrow.Sign My Guestbook Read TributesSunday, January 9, 2011 4:51 PM, PSTJoshua has been spiking fevers today & feeling progressively lousy. He's had chills, headaches, & no appetite and he is now sleeping (has been for the past 2 hours).Could this be a line infection? Hopefully not, but the nurse said if Joshua doesn't start feeling better soon, she's going to call the neurosurgeon to ask if blood can bepulled off the port & sent to be cultured. It's also possible that Joshua's picked up some bug while here in the hospital & we're seeing the manifestation of that.Either way, today has been a wash when it comes to the goals we had of getting him in his chair & spending more time upright.I think I'll stop trying to guess when Joshua will get discharged. It'll happen when it happens. I was really hoping it would be in the next couple of days because afriend from Australia is in town (at home) and we were supposed to get together on Tuesday before she leaves to go home at the end of the week. She was Joshua'sphysical therapist before moving back home and I haven't seen her in 1.5 years... to say I was looking forward to visiting in-person is an understatement and I amdisappointed that I'm most likely going to miss her.Meanwhile, back at home, Bethany (my 3 year old) has been growing increasingly ill over the past 2 weeks. Repeat visits to the pediatrician & multiple blood draws, ashot of Rocephin & a script for antibiotics have not improved her condition one iota, so she will go back to the doctor's tomorrow & we're anticipating her beingadmitted to the local hospital (not the one Joshua is at). The doctor wanted to admit her this past Friday, but with Charley coming up here yesterday (a necessity), wejust couldn't manage it. Assuming that Bethany does get admitted tomorrow, Charley will take a leave of absence from work (thank God for FMLA) to be with Bethanywhile I stay with Joshua. Prayerfully, it won't be too long before our entire family is at home together again.Sign My Guestbook Read TributesSunday, January 9, 2011 8:33 AM, PSTSorry for the lack of updates. The past few days had a lot of emotional aspects to them that I didn't feel like broadcasting to the world. Suffice to say that therewas a 'family care conference' where Joshua's doctors, a palliative care doctor & nurse and I sat down to discuss where we go from here. A lot of it was confirmationof what we already knew, and a lot of it was hard to hear.Charley came up yesterday to spend some time with Joshua, Adam & me. He & I were able to talk and we came to the agreement that while we understand thesituation Joshua is in now with his apneas, bradycardias, heart arrhythmia & other problems, we are not going to live in fear or apprehension of what could happen.We're going to be aware of the 'new normal,' but live as normally as possible. Fact is that only God knows how Joshua's life will play out, and our neurosurgeon's P.A.reiterated that fact yesterday when we talked, telling me how they've had patients that everyone was sure were going to die, but the kiddos didn't & no one couldexplain how it was possible. We're all looking at Joshua with the belief that he could be one of those kids, so we'll treat him as such... understanding that while hisprognosis may not be great, only God knows the final outcome, so we're going to continue to treat him as though he's expected to have a long life. If nothing else, thisattitude might keep us sane so that we're not constantly worrying about Joshua & the future.We started pushing Joshua a bit more yesterday, getting him to sit up at greater inclines & keeping him upright for longer periods of time. Today we'll do the same.Our goal is to get him sitting in his wheelchair while on telemetry & a portable pulse ox so that we can instigate some bigger desatting episodes. Our neurosurgeonwants us to get Joshua to desat and NOT stimulate him to breathe (normally we rub his chest & shake him a bit to remind him to breathe again) ~ she wants to see atwhat point Joshua kicks in and starts breathing on his own... or if he will. Since it's a controlled environment & they can deal with things if Joshua does stop breathingentirely, I agreed to doing the test.The man of the hour is awake, so I need to wrap this up.... if things go according to plan, we should get out of here on Tuesday or Wednesday.Sign My Guestbook Read TributesThursday, January 6, 2011 11:11 AM, PSTYesterday, Joshua had a cardiology consult & echocardiogram because telemetry confirmed arrhythmias and bradycardias. I haven't gotten the official results of theecho yet.His neurosurgeon reset his shunt last night & this morning, Joshua woke up without a headache ~ a first since the beginning of November, so that's encouraging. Hisback is still puffy from the CSF leak, but we'll put him in a corset again to apply pressure to the leak & encourage the dura to seal/heal over. If that doesn't work,then Dr. W will have to take Joshua back to the OR to surgically re-seal the dura, but we're all hopeful that external compression will do the trick.Neurology upped the amount of Neurontin Joshua is getting and that seems to be starting to help (it takes about a week to get blood levels of the medication built upto a therapeutic dose), as Joshua is not complaining that his foot or legs are burning anymore.The nurses and I are hoping the doctors will all get their schedules coordinated so we can do the care conference meeting soon, & I anticipate Joshua will be able to gohome not long after that meeting occurs.Sign My Guestbook Read TributesTuesday, January 4, 2011 8:14 PM, PSTJoshua did get moved to the pediatric floor this afternoon and it's nice to finally be out of PICU. Only an hour after transferring, a large CSF leak was discovered atthe incision site on his back. It was a total shock to everyone since his back had been completely flat when the neurosurgeon's P.A. examined Joshua less than an hourbefore he transferred to the floor. Whether he'll have to go back to the OR to get the leak surgically re-closed is up in the air for now & will be assessed tomorrow.He's on telemetry, which is where the cardiac unit upstairs gets all of his information coming from the chest leads for heart rate, respiration, blood pressure &oxygen saturation. The cardiac guys will be evaluating the irregularities Joshua has been having this past week to determine if what we're seeing is due to brain stemdysfunction or some other, possibly treatable, condition.A family care conference is being held soon where the doctors & I will sit down together to discuss where we are now & where we're going from here.Neurology & genetics are still providing care and are not ready to send Joshua home, and now, with the CSF leak occurring, neurosurgery is not ready to discharge him,either. I have no idea how much longer we'll be here, but I'm still hopeful that we could be sleeping in our own beds by the weekend.Sign My Guestbook Read TributesMonday, January 3, 2011 3:28 PM, PSTJoshua had his shunt internalized and is back in PICU resting comfortably. He will go to the regular peds floor tomorrow & a discharge home shouldn't betoo far behind. I'm more than ready to go home & get back to living life, so today finds me feeling encouraged to have this third surgery in a weekbehind us.We've noticed signs that Joshua's lost more sensation & function in his legs and feet. It wouldn't be a surprise if that happened since Dr. W had to bevery aggressive this time in detethering the nerve roots along the base of Joshua's spinal cord. I'm looking forward to tomorrow, when we will get Joshuaout of bed & see how he does with standing & taking steps. For today, the plan is to rest & recuperate.Sign My Guestbook Read TributesSunday, January 2, 2011 7:45 PM, PSTToday brings some good news ~ the knot that was below Joshua's g-tube & causing him so much discomfort has disappeared. The theory is that it was caused by amuscle cramp, but whatever the cause, it's now gone, which is a big relief.He does not have an infection, which is also good news, but that happiness is dampened by the realization that his temperature fluctuations are another sign ofbrainstem dysfunction.Tomorrow, Joshua will have his shunt reimplanted. He'll have visits by neurology, pediatrics & genetics, as well. I'm not sure whether he'll come back to PICU or go tothe main floor, nor do I know how much longer we'll be here, but I am hopeful that we will be heading home soon.Sign My Guestbook Read TributesSaturday, January 1, 2011 4:13 PM, PSTToday has been a long one & it's only 4pm. Joshua has been uncomfortable with a persistent burning sensation in his left foot and he's been complaining that the areabelow his mickey button (g-tube) is sore. Upon palpation, a small "knot" can be felt, but no one knows what it is or if there's any significance to its presence and sinceit's the weekend, no one wants to call in the GI doc for what might be a completely benign situation. Soooooo... we're just watching it. When the neurosurgeon's P.A.came by, she said, "Let's watch and see when it declares itself." Meaning that it will either become something or it won't, and we'll deal with it when we know whichdirection to go.Joshua also has a fever & while no one is stressing about it at this point in time, it's definitely something they're keeping an eye on since Joshua's had his back opened& has his shunt externalized & has his central line accessed ~ all 3 could be a site for infection. He's never had a post-op infection & I'm hoping he won't break hisstreak now.Sign My Guestbook Read TributesFriday, December 31, 2010 2:16 PM, PSTJoshua has had a lot of neuropathic pain in his legs & feet since early this morning. He says it feels like it's burning. :( We know the pain is a result of Dr. W being soaggressive with cleaning out the scar tissue around all of the nerve roots ~ messing around with the nerves doesn't make 'em happy & they begin screaming & sendingout pain messages, which makes for a very unhappy little boy.It took over 4 hours to get his pain under control this morning, but now that he's on a fentanyl pump plus hourly boluses of morphine or fentanyl (alternating eachhour) plus decadron plus valium plus neurontin (which is being aggressively increased), he's finally not in abject pain anymore and that is a huge relief.He's not fully asleep, but is dozing while sort of watching SpongeBob on tv. As long as no one grazes, bumps or otherwise touches the skin on either of his legs or feetor tries to move him, he's doing all right.Dr. W anticipates taking Joshua back to the OR to reimplant his shunt on Monday. She still hasn't decided for sure if she'll keep it in his back or put it in his head,but she's got a few more days to figure it out & I fully trust her judgment about that, so it's not something I'm worrying about.The geneticist will be coming to assess Joshie & add his 2 cents to the party. The other specialists are hoping he may have an idea of something to test for ~everyone agrees that the brain stem is dysfunctional, but they also are in agreement that it would be really nice to know WHY, so they're hoping there's a geneticcondition that can be tested for (one that hasn't already been checked & ruled out) that might give them an answer.His heartrate keeps doing weird things ~ dipping low, going high, missing beats, beating irregularly ~ but there's nothing that can be done about it since it's a brainstem issue, so the nurse just comes in & silences the alarm when it goes off. That's a tangible reminder that things won't ever be the same again, but I'm trying toact like it doesn't bother me. I had a big, ugly cry when I was alone and now I'm trying to get accustomed to a hospitalization that is similar in many ways to the onesJoshua has had before, but is strikingly different in others.Sign My Guestbook Read TributesThursday, December 30, 2010 8:45 PM, PSTHe's done. Surgery took 3 hours. Dr. W said she got him the most detethered she ever has & she is optimistic that this is going to help. First time she's beenoptimistic about anything this hospitalization, so praise God! He'll go back to PICU & we'll deal with the shunt in another few days (it's still externalized). Theanesthesiologist came out to say that Joshua tolerated anesthesia well and handled everything better than expected. He got extubated without a problem, too. Hesaid Joshua's blood pressure & heartrate are pretty high, but they're watching it in recovery.Breathing a BIG sigh of relief now & hoping for a comfortable night for my sweet little guy.Sign My Guestbook Read TributesThursday, December 30, 2010 5:30 PM, PSTJoshua is now in surgery. He was taken in an hour ago. Since he was coming down from PICU, he didn't go to the presurgeryarea, but instead was taken directly to the operating room. Adam & I were allowed to enter the 'authorizedpersonnel only' area and stay with Joshua while the anesthesiologist put him out with propofol. I'm very aware that this wasa gift because we've never been allowed to go into that restricted area before. Joshua was scared & he cried a little bit as hebegan to feel the effect of the propofol, but it puts him out in about 10 seconds, so the crying was short-lived. Once he wasout, he was wheeled into the OR and Adam & I were escorted out.We're sitting now in the surgical waiting area, where we'll remain until surgery is over.Prayer requests for this surgery:1. That Joshua would not go back to PICU on a ventilator. The anesthesiologist warned us that it was a possibility this timesince Joshua has been having apnea episodes. He's never gone to the floor on a vent & I really don't want today to be theday that he does.2. For Joshua to not have any loss of function in his legs.3. For a complete detethering to be possible. It would be wonderful if Dr. W could get all of the scar tissue & regrownlipoma out so that he doesn't have to have this done again for at least another year (his last detethering surgery was 13months ago).4. For Charley, who had to go back to work & is currently at his job while knowing his son is in the operating room. Pray forhim to have strength & to be shown compassion & understanding by those who he encounters tonight.I'll update once more after surgery. Thank you to everyone who has left such uplifting & encouraging notes in theguestbook. It has brought me a lot of comfort knowing so many care about Joshua & are thinking about him & praying forhim.Sign My Guestbook Read TributesThursday, December 30, 2010 11:30 AM, PSTJoshua will be heading back to the OR today to have his spinal cord detethered. A tethered cord can put downward traction on the brain, so our neurosurgeon wantsto get his cord released & see if that helps at all.Joshua did have a restful night & we were both able to sleep for a bit over 5 hours, which was exactly what we needed. He has been having headaches today, butthey're controlled with fentanyl & morphine, so it's manageable. A CT scan done this morning showed his ventricles were the same size (super tiny). No one reallybelieved Joshua suddenly developed hydrocephalus overnight, but they did the CT just to make sure.His EEG was essentially normal. The right side of his cerebellum is slower than his left, but that was it. There were no signs of seizure activity, which of course is agood thing.I don't know what time he'll be taken downstairs for surgery, but I will update again when I can.Sign My Guestbook Read TributesWednesday, December 29, 2010 6:33 PM, PSTIt's been a wild afternoon.The pain in Joshua's head increased dramatically as the hours went by due to his shunt being clamped shut (the pressure against his brain & spinal cord keptincreasing). By the time the tech came in to do his EEG, he had been crying non-stop for several hours despite regular doses of fentanyl & morphine. His head wassensitive to a gentle touch, so the tech needing to scrub (even as gently as she could) his scalp in the areas where she needed to attach the 28 electrodes wasexcruciating to Joshua & he screamed in pain through it all. His nurse gave 2 more doses of pain meds during the application of the electrodes & when the test wasbeing run.Just as the EEG was complete, our neurosurgeon's P.A. showed up. She came in asking, "What's going on?" and I begged her to please open his shunt. She looked atJoshua & reached over to flip the switch, opening the tubing and allowing CSF to drain. Within seconds, a full ounce had come out and within another minute anotherhalf-ounce was out. Joshua stopped screaming. In another ten minutes, another half-ounce was out and he was almost done crying. I almost cried with relief, myself.One of the side effects of narcotics is depression of respiration ~ the medications slow a person's breathing. Joshua had been so incredibly loaded up with painmedication while his head had been hurting that once the pain was taken away by opening his shunt, he relaxed... and stopped breathing. Twice. And even though Iknew what was happening and why it was happening and I knew there was no way the nurses & doctors in PICU would let him stay not breathing, I still had a hugeadrenaline rush both times when the alarms started blaring & I saw his respiration rate was a flashing red zero. The first time, Adam & I immediately started shakingJoshua and telling him to breathe. The nurse was in there right away & she made sure Joshua was stimulated enough to keep breathing. A few minutes later, hestopped breathing again & he didn't immediately respond to my rubbing his chest & talking to him, so his nurse took over and after 24 seconds of apnea, there wassuddenly a big flurry of activity as two more nurses and the PICU doctor rushed in to help. I was relegated to the hall just outside the sliding glass door, so I couldwatch, but not do anything. It only took a few more seconds for Joshua to start breathing again, but I swear, it felt like minutes. The PICU doc didn't want to giveNarcan because while it reverses the effects of too much narcotic, it would have resulted in Joshua having zero pain coverage and that would not have been good. Soshe decided (very quickly, as this all took place within a space of about 2 minutes) to have a nurse draw up Narcan & dilute it by 10 so that if he stopped breathing athird time, she could give a small amount ~ just enough to wake Joshua but not enough to remove all of the narcotic in his system. Fortunately, he didn't need it, as hedid not stop breathing again. His respiration rate did drop repeatedly to scary levels (2 & 3 breaths per minute), but with some rubbing on his chest & talking loudly tohim, he would rouse and begin breathing better once more.About an hour later, the neurosurgeon & her P.A. came by again to check how Joshua was doing & they were thrilled to see him sitting at 60 degrees and interacting alittle bit. He was seeing double, but his head wasn't hurting at all and that was a huge relief. Discussion began about the pros & cons of putting in a VP shunt versusthe pros & cons of leaving in the LP shunt. IF the decision is made to put in the VP shunt, I will list all of the pros/cons of each, but I'm too tired to get into it rightnow. At this point, the only decision made was to re-adjust Joshua's shunt so that the flow was slower in an attempt to find a middle ground that might help. Thethought is that if a balance can be found between draining enough CSF (and thus preventing headaches/pseudotumor symptoms) but keeping the pressure as high aspossible (thus potentially reducing the amount of tension placed on the cerebellum in a downward manner by the shunt), maybe that will help Joshua to feel better fora lot longer. Dr. W said we'll take this day by day & see how things work & adjust the plan as we go.He's currently playing with legos with Adam. His eyes are very swollen from hours of crying & while he doesn't feel great, he obviously feels immensely better nowthat his shunt is open again and I'm grateful for that.Sign My Guestbook Read TributesWednesday, December 29, 2010 11:52 AM, PSTWhat we now know for sure: It's his brainstem. It's dysfunctional. They cannot fix it. The remainder of our time here willbe spent tweaking meds & the shunt so that we can give Joshua the best quality of life possible. There is no timeline for howlong he could live ~ could be years or could be short. No one knows, but they know human beings cannot fix this.The neurologist is putting Joshua on Neurontin for neuropathic pain & to attempt to lessen the severity of his headaches oncewe're home so that he needs less narcotic pain medication. There is nothing that can be done for his dysarthria (speechproblem) or his double vision, as those are both linked with the brain stem dysfunction. They just pulled a ton of blood fromhis port to run lab tests to see if there are any irregularities that need to be addressed. Dr. G questions if Joshua's thyroidand/or iron levels are off ~ something about the whole "midline defect" that could cause a thyroid problem & Joshua's hadissues with anemia in the past. That won't matter to his overall diagnosis, but appropriate medication could help him to feelbetter and that's what we're trying to do. He'll have an EEG to make sure he's not having seizures & to check brain wavefunction.The neurologist trained at the Mayo clinic and is a recent graduate ~ she had a TON of information and was very helpful.She was kind, but matter-of-fact about what can and cannot be fixed.I'm waiting to see neurosurgery and discuss what kind of plan she wants to enact regarding the shunt. The neurologistsuggested opening the shunt again but putting it at a lower setting & then adding in Diamox at a tiny dose to see if thatcombination would work well, but ultimately, anything shunt-related is the neurosurgeon's territory.Sign My Guestbook Read TributesWednesday, December 29, 2010 6:53 AM, PSTJoshua has had a very bad night. While his stats were more stable, he was waking up with screaming head pain & retching 6-8 times before the nurse got morefentanyl into him, at which point he would fall back to sleep for awhile longer before the cycle started again. All. Night. Long.This is so reminiscent of life prior to getting the shunt, when Joshua would puke and thrash around in pain every day. As such, I personally feel it was a bad idea toturn off his shunt and I am hoping the neurosurgeon agrees when she comes in and hears what is going on. I'm guessing she'll want to stay the course, though, becausehe's not bradying down continuously or desatting frequently. If it's up to me, though, I'd choose the bradycardia + oxygen desats over screaming head pain &continuous vomiting. One makes him tired. The other makes him miserable. Neither is good, neither is what we want for him, but right now I am totally frustratedwith what has been going on all night long.I hate that there isn't going to be "a fix" with this. I hate seeing my baby hurting and abjectly miserable and not having a way to help him in a tangible way other thanto call the nurse for more drugs. I also really dislike that we're in PICU where the nurses don't KNOW Joshua the way the nurses on the regular floor do. The guywe've had tonight hypothesized that it's the erythromycin he's giving Joshua that's making him throw up. That same med he's been on for years in order to get hisGI tract contracting... the one that has never caused a problem for him in any way, shape or form. But this nurse doesn't know Joshua from a hole in the ground, sohe's thinking, "Hey, antibiotics can make a person nauseous.... bet that's the problem here!" And then I have to try to get him to understand that noooo, that probablyisn't the case this time, but since he doesn't know me, either, he disregards what I'm saying. Like I said, it's just a frustrating situation and I wish Joshua could beon the regular floor. If nothing else, it's possible to get SOME sleep on the regular floor and here in PICU, that's almost just a dream (I did get a little sleep, brokenup, throughout the night).Ugh... okay, enough venting... on to information again....The neurologist came by last night and said she thinks this is brainstem-related dysfunction. She wants a speech therapist to evaluate Joshua for aspiration (makesno sense to me since he never has & shows no signs that he currently is) & to try and figure out what may be going on with his speech, and she (neurologist) will be intoday to discuss some testing she may want to conduct.The geneticist has been called to consult, too. Dr. A has already done a full work-up on Joshua, including skin & muscle biopsies, but with what's going on now, the teamwould like him to be included again to see if maybe he has some thoughts to contribute.We'll see Joshua's neurosurgeon again today, of course, and I'm praying she will have a few minutes to listen to my concerns about her clamping the shunt. I wish shehad put in an ICP monitor yesterday so that we could know whether the pain & vomiting are being caused by high intracranial pressure, but since she didn't, we are leftto guess. Maybe she'd do that today... I don't know... but I plan to mention it to her.That's all for now. Joshua is beginning to stir again, so I need to get towels ready.Sign My Guestbook Read TributesTuesday, December 28, 2010 4:40 PM, PSTJoshua just got out of a 1-hour surgery to externalize his shunt ~ the tube that rests inside his abdominal cavity was broughtoutside his abdomen and clamped off. We're going to see if this helps his symptoms in any way. He'll be in PICU for thenext few days, at least.No one really believes this is going to do anything, but it was all the neurosurgeon had left to try and she wasn't ready towave the white flag & give up without doing something. His MRIs showed that he is adequately decompressed from his lastsurgery, there's no obvious brainstem compression happening, and nothing structural that could easily be fixed. This has ledthe neurosurgeon to believe Joshua has a degenerative brainstem and the reason for his symptoms is unfixable.The clamping of the shunt is an effort to bring increased fluid pressure to his spinal area and maybe alleviate somesymptoms for awhile. If Joshua improves at all in the next few days, he'll go back to the OR to have his shunt completelyremoved. If he doesn't improve, there is no plan yet for what will be done. We are all taking one step at a time with thisand plans change frequently as Joshua declines.Charley & Adam are here now ~ they got here just before Joshua was taken to surgery, which was a blessing because Ididn't want to sit through it alone. We all prayed over Joshua before he was put out and we are continuing to believe God isgoing to make a way where there seems to be no way.Sign My Guestbook Read TributesTuesday, December 28, 2010 8:52 AM, PSTThere was a change of plans yesterday and Joshua ended up being flown to Portland last night. About 20 minutes before theplane landed, he began having bradycardia episodes. His heartrate would drop and then pop back up, but by the time welanded, his overall heartrate had decreased from 105-108 (normal) to the low 80's. The lowest reading I saw while with theparamedics was 49. His blood pressures also began tanking, with the lowest reading at 76/35.Through the night, he has continued to exhibits signs of increasing brainstem compression. He will be having MRIs done andneurosurgery/neurology consults. We have been told this is a life-threatening situation and that if testing shows brainstemdysfunction, that is unfixable & Joshua will not live much longer.I cannot wrap my mind around this. I don't know HOW things went from being "typical/normal for Joshua" to "lifethreatening." Yesterday, I kept thinking that someone was exaggerating and freaking out for nothing and when we got toPortland, they were going to look at him and tell me that he was fine. That didn't happen. Instead, everyone who comes inreaffirms the seriousness of the situation and there is much concern.His respiration rate has dropped as low as 8 breaths per minute (20 is normal during sleep for a child Joshua's age). Hisperfusion flucutates. Ironically, the oxygen desats that led to this hospitalization are nowhere to be seen & Joshua's O2 satsare stable at 97-99%. His heartrate momentarily goes up to 100+ when he moves, then drops quickly back into the 70's.At this point, the only thing our neurosurgeon has said is that she could try moving Joshua's shunt from his back to his head,a move that she has insisted for the past 2 years would kill him. That really drives home for me just how hopeless everyoneis feeling.... and it's a scary place to be.Now is when we need God to effect a miracle. I am coming to realize that the healing Joshua receives may occur when hegoes Home to be with Jesus & not before, but my heart cannot accept that just yet. It is REALLY difficult to reconcile thelittle boy laying calmly in bed beside me, watching cartoons, with the gravity of the situation I keep getting told he's in. Thisis, by far, the hardest thing I've ever gone through. If you pray, please ask God for wisdom for the doctors & for me so thatwe can make good decisions for Joshua and ask Him to heal Joshua according to His will. Thanks.Sign My Guestbook Read TributesMonday, December 27, 2010 1:50 PM, PSTJoshua is being admitted to our local hospital for observation while the pediatrician waits to hear from the neurosurgeon.I dropped the pulse ox off at the ped's office this morning & talked briefly with the nurse about the readings we'd gotten over the past 3 days, then left to go tophysical therapy with my 3 youngest. While at therapy, the PT (who was not working with Joshua since he's too fragile right now for therapy) watched Joshua as hehad difficulty with initiating movement & pretty much froze in position for about 20 seconds. During the time he was stuck, his eyes were vacant & while we could tellhe was listening to us talk to him, he obviously was not comprehending what we said. The PT was concerned by that episode, then moreso after seeing Joshua desat.After we left, she called the pediatrican to share her concerns and by the time I got home an hour later, my phone was ringing with the pediatrician's nurse on the linetelling me that in light of the pulse ox readings & reports from herself & the physical therapist, Dr. S (ped) had called Dr. W (neurosurgeon) & left a message to haveDr. W call back, and in the interim, Dr. S is going to admit Joshua for observation.At the end of my conversation with Dr. S's nurse, the nurse from Dr. W's office buzzed in on my double line. She said Dr. W was in surgery but wanted details aboutwhat is going on with Joshua. I filled her in the specifics and she assured me that Dr. W was going to be talking with Jenny (her P.A.) and one of them would be incontact with me later today to tell me what, if anything, they think we should do. She said that Joshua has had so much trauma to his brain already that he reallycan't tolerate being oxygen-deprived for even a minute & putting him in the hospital is the best option right now.So... we're to be at the ped's office at 5pm & then we'll head across the street to the hospital, where Joshua can be given oxygen when his O2 level drops & everyonecan feel "safer" knowing he's being monitored. I have no idea what the plan is... how long we'll be there or if Joshua will be transferred up to Portland or what. I'llupdate again when I know something.Sign My Guestbook Read TributesMonday, December 27, 2010 12:06 AM, PSTThings haven't gotten better. In fact, they've gotten worse.Joshua is having episodes of low oxygen levels evidenced by his lips turning purplish-blue in color, the skin around his mouth and over the bridge of his nose turning adusky blue-grey and formation of dark purple circles under his eyes during "episodes". He also gets extremely tired & develops a headache. After I told ourpediatrician about what we were seeing at home, she loaned us a pulse oximeter to use over the holiday weekend. I picked it up on Friday and began actively payingattention to see when Joshua's color was "off" so I could hook him up to the pulse ox and measure his O2 saturation level. He had readings down to 82-86% and manyepisodes where his O2 was 92-94% (normal is 95-100%). What does this mean, exactly, and what will we do about it? I don't know yet. I emailed the results to thepediatrician tonight and will wait to hear from her tomorrow or Tuesday (she's out of the office on Mondays).I never heard back from Dr. W's assistant, which is a first since they typically call back within a day of my leaving a message on the P.A.'s voicemail. I don't know ifthat means there's nothing they can do (which is what I expected) or what. Either way, their silence is not terribly reassuring to me.I was informed by our ped's nurse that the ped would be happy to fill out the paperwork to apply/nominate/refer (whatever the appropriate word is) Joshua forMake-A-Wish. I asked if he actually qualified for that program since the primary eligibility requirement is the child must have a life-threatening illness/condition, andI admit I was shocked when the nurse quietly nodded her head. I still am struggling to wrap my brain around the idea that he doesn't have a prognosis for a normallife expectancy. This is one more "new normal" that I never saw coming & it's the hardest one for me to accept, by far.Joshua has a new prescription for pain medication ~ Lortab ~ and that is working better for him than tylenol with codeine was. He's still not tolerating bolus feeds, sohe's back on a continuous feed of 2 ounces per hour for 18 hours a day & he's doing well with that, which is something I'm thankful for. His weight was down to 37.5pounds last Thursday, so we're hoping to get a few pounds back on him & having him NOT puking is a good start to achieving that goal. He dropped from the 75thpercentile in weight to the 25th percentile in about 6 weeks, which is concerning since he's above the 75th percentile for height (44 inches). He'll see his physicaltherapist tomorrow to assess his foot positioning & gait and perhaps determine whether he needs to be braced again (I don't know if she'll make that decisiontomorrow or not), and I'll be calling the ophthalmologist to make an appointment so the double vision/fuzziness that Joshua is experiencing can be evaluated. Whileit's suspected to be "central," we're hoping maybe we're wrong and the ophthal can do something to help.It is heartbreaking for me to realize that I subjected my son to a surgery that did nothing to help him and that we're now at a place where no one really knows whatto do. "Fixing" him seems to be the impossible dream and that's a hard reality to accept.Sign My Guestbook Read TributesThursday, December 16, 2010 10:12 PM, PSTSorry for the lack of updates.Joshua ended up developing chicken pox. Turns out 4 other kids at home did, too, including the two who were vaccinated against it. Fun times.We came home on Monday since Joshua was tolerating a continuous feed of 2 ounces per hour around the clock.I don't think the surgery was very successful. Joshua is still having headaches, is throwing up if we try to bolus feed him or if he eats solid food & is seeing double.He gets dizzy & off-balance, which makes ensuring he doesn't fall & hit his head a challenge.I'm very sad that things didn't improve since they always have in the past. I knew there were no guarantees with this surgery, but it's still a disappointment thatJoshua isn't getting the relief that he has in the past. I'm not sure where we can go from here. I called Dr. W to let her know what's up, but I don't expect that shecan do anything.Sign My Guestbook Read TributesFriday, December 10, 2010 8:41 PM, PSTJoshua's balance is still wonky & his fine motor stuff hasn't improved, but after talking with the neurosurgeon's P.A. at lunchtime, I decided that I could managethings at home & watch how things progressed & she agreed with me, so she wrote up his discharge orders. We were almost out the door this afternoon when thedischarge got rescinded due to Joshua developing a high fever & continuing to vomit everything he tried to drink (he wasn't interested in eating). Talk aboutdisappointing!He's back on IV fluids & fentanyl for the headaches he's having (T3 isn't helping), which feels like a huge setback, but I know he's in the best place possible to takecare of him, so that brings a measure of comfort. I've been told he'll be here for a few more days at least, but hopefully not more than another week. We'll see howthings go. I guess I was silly to think we were actually going to get out of here with just a 5 day stay. Sigh.Sign My Guestbook Read TributesThursday, December 9, 2010 7:02 PM, PSTJoshua is doing all right. He's throwing up pretty much anything he eats & drinks, but that is normal for him post-operatively. I still have hope that he'll stop soon.His balance is wonky, so when he sits, he shifts his weight to his left side & bends his upper body to the right for balance. When he stands, he throws his bellyforward while arching his back in an exaggerated manner. He is having some difficulty using his right leg & he staggers like a little drunk when he tries to walk.He's struggling a bit with fine motor tasks like picking up a small item with a pincer grasp & his arms/hands shake. Why? Not a clue.The consensus with the doctors is that some of what we're seeing could be post-op stuff and that will improve in time. They're hoping to see some improvement bytomorrow. If there is none, then they will consider whether there's some other neurological "thing" brewing. It's a bit worrisome, but the physician's assistantreassured me when she said that if there's something else going on, Joshua's here & they're here (the specialists), so it'll get figured out.Other than that, he's doing well. He isn't needing anything other than tylenol with codeine for pain & he's generally in a decent mood for being a 4 year old stuck inthe hospital recovering from brain surgery. If things look better with his balance & other symptoms tomorrow, I think there's a chance Joshua could get discharged& we could get out of here. That would be a relief. I'm more than ready to go home and I know my little guy is, too.Sign My Guestbook Read TributesMonday, December 6, 2010 4:46 PM, PSTSurgery went as well as could be expected & Joshua is now in PICU. It's been a bit of a battle to get his pain under control, but he's resting more comfortably now, soI thought I'd get a quick update written here.Shoot ~ spoke too soon. He's crying again, so I have to go. I'll update again when he's out of PICU. There's just not time to write a lot right now.Sign My Guestbook Read TributesThursday, December 2, 2010 4:28 PM, PSTA friend suggested that if I share what's going on with Joshua in more detail, it would help others to know how better to pray for him. Part of me agrees with that,but another part thinks it shouldn't matter if everyone knows the nitty-gritty details ~ God does, and if you pray, the Spirit will intercede & that's enough. I justdon't want to get a million questions because right now, I don't have a lot of answers, even to the questions I have, myself.That said, here's the gist of the situation...I emailed the director of pediatric neurosurgery at UCLA to ask if he would evaluate Joshua's MRIs for cerebellar ptosis (slumping ~ where the bottom part of thebrain sags way down). He wrote back & said he'd be glad to do that & I should mail him Joshua's MRIs. So I did. Our neurosurgeon in Portland knows I contacted Dr.L & was fine with it. In fact, she welcomed having another opinion weighing in since Joshua is a complicated kid.The short version of a long story is that we are in a catch-22 position. The LP shunt that Joshua has is causing his chiari to reform (pulling his brain out of his skull).The solution to this problem is to move the LP shunt from Joshua's back to a VP shunt that would be in his head. Unfortunately, Joshua's anatomy & propensity foroverproducing scar tissue (result of connective tissue disorder) makes it impossible for a shunt to be placed in his head & his neurosurgeon said she can't/won't do it.It would be too dangerous. We can't remove his shunt completely ~ he definitely needs it ~ so we have no choice but to leave it in his back, where it will continue tocreate a vacuum of sorts (due to lower pressure in his spine than his head) & his cerebellum will continue to be pulled downward & out of his skull. This, obviously,carries great risk as the cerebellum compresses Joshua's brainstem.At this point, the only treatment option offered is to go in & do brain surgery any time Joshua becomes severely symptomatic. Unfortunately, we were told at thetime of Joshua's 3rd brain surgery that there were only so many times the doctor could open his head without it eventually leading to a bad outcome.See why my heart is heavy?The neurosurgeon at UCLA has conferred with our neurosurgeon in Portland and Charley & I are hopeful that when I see her this next week, she will have a Plan C thathas a better long-term prognosis for our son than the other things that have been suggested. At this point, it doesn't look very good & that is heartbreaking for ourfamily.Ultimately, I know that God is in control & that He will not take Joshua home until he has fulfilled his purpose here on earth, same as everyone else. My hope & prayeras his mom, though, is that my little boy has many, many, MANY more years that he's going to be here. I truly cannot fathom a life without him in it.Sign My Guestbook Read TributesThursday, December 2, 2010 11:53 AM, PSTJoshua's surgery will be this upcoming Monday, so we'll head up to Portland on Sunday & stay at the Ronald McDonald House, as usual.I don't really know what else to say at this point. My heart is heavy with Joshua-related 'stuff' that I am not ready to share publicly, which leaves me searching forwords to write. If you're the praying type, please send up a few on Joshua's behalf & for his doctors to be granted wisdom & insight.I'll update again on Monday after his surgery.Sign My Guestbook Read TributesMonday, November 22, 2010 6:37 PM, PSTJoshua had his MRIs today. They were rescheduled after my van's power steering sprang a leak & needed to be repaired before I could drive up toPortland. We came here yesterday & today had his scans, which showed his chiari has reformed, bone has regrown (again!) and he's got a lot of scartissue in the back of his head. The end result is that cerebrospinal fluid is being blocked from flowing freely & his brainstem is being compressed.He'll have his 4th brain surgery sometime after Thanksgiving. Dr. W told her scheduler to get Joshua in the week after Thanksgiving, but that may not bepossible. The scheduler said she'd call me tonight, but that hasn't happened, so I'll call her in the morning before we leave town to head for home to seeif she has a day & time for me yet.Once again, I am torn by emotions. I want Joshua to have surgery if that is what it's going to take to make him happy & able to get back to having a'normal' (for him) life. But I so do NOT want him to need to have surgery again. I don't want him to have to go through the pain of being cut open yetagain. I don't want to have to go through the whole 'hospital thing' again. My heart hurts for my child, for all he endures. I understand this is his life...his reality... but almost 5 years into it, I still do not understand WHY. Once again, I pray for him to be healed. To not need intervention. Which seemspretty futile when we have new MRIs showing a definite problem that needs to be addressed.Once again, I am surprised that I haven't gotten used to this. The sorrow sweeps over me and I am reminded... oh yes.... this is what it feels like to behelpless to change something that I wish didn't have to be this way.Sign My Guestbook Read TributesThursday, November 4, 2010 2:18 PM, PDTUnfortunately, in typical Joshua fashion, things have gotten worse for my little guy. At the beginning of the week, I was talking to our pediatrician's nurse about oneof my kids & she asked how Joshua was holding up. I told her we'd weighed him that morning since his pants were getting loose on him & according to our scale, he'dlost 3 pounds in the past 2.5 weeks. She talked to the pediatrician, who authorized a new prescription of Zofran and said she'd like to have Joshua come in to getweighed so she could document the weight loss. We saw her today and Joshua is actually down 4 pounds now. For a little boy who only weighed 42.5 pounds prior to hisdownhill slide, dropping 4 pounds is significant.We'll be taking Joshua in to get labs pulled off his port tomorrow ~ just a complete blood count & metabolic panel ~ as a precaution to ensure he's not at-risk forcrashing as a result of being dehydrated. If his labs don't come back all right, we can always admit him for 24 hours to get IV fluids & get things back in balance;however, I'm hoping that can be avoided.The Zofran isn't helping to stop Joshua's vomiting, but the ped wasn't surprised because, as she put it, "Medication isn't going to help with this problem; it'sneurological." If anything, the Zofran confirms that this is something originating in Joshua's brain. The question the ped & I both have is whether the problem ischiari-related or tethered cord-related. We are guessing that it's either scar tissue built up in his head that is blocking the flow of CSF or it's a tethered cord thatis pulling his brain downward (via traction) and causing the symptoms we are seeing that mimic chiari. Dr. S confidently told me she thinks the MRIs will show Dr. W(neurosurgeon) what is going on. I pray she's right!It does seem at this point that Joshua will need another surgery, but I can't say that it's definite until Dr. W evaluates the MRIs. If he does, my prayer is that we'llget it done soon so that Joshua can be feeling good again by Christmas. I'd really like for him to be able to eat without vomiting & sit up without pain so that he canenjoy all of our family's Christmas traditions!Sign My Guestbook Read TributesThursday, October 28, 2010 6:51 PM, PDTJoshua's been having headaches, back pain, increasing vomiting & decreasing ability to digest food, intolerance to beingupright for very long at any given time, and his articulation is going downhill, as well, so I took him to a local neurosurgeonto get his shunt setting checked. It was still where it's supposed to be, so the pediatrician called our neurosurgeon inPortland to ask where she wants new MRIs to be done. They need to be done in Portland, of course, since CINE MRIs can'tbe done locally, so Joshua's appointment is November 10th. We'll see what's going on & whether this is a tethered cordissue or a chiari problem. Since Joshua doesn't want to bend a whole lot, I'm guessing it's his back, but the scans will showfor sure.Better news to announce is that Joshua is a big brother now! Our family adopted two girls who both have Down syndromefrom a Ukrainian orphanage. Charley & I were gone for 5 weeks to get them and we got home 2 weeks ago. Bethany &Hannah are super sweet and Joshua loves having baby sisters. He's been a great big brother & had no problems adjusting tonot being the "baby" anymore.Sign My Guestbook Read TributesSaturday, August 14, 2010 11:26 PM, PDTWe had a quick trip to Portland this past Thursday for Joshua's bi-annual bladder ultrasound + urologist appointment. We left the house at 7:30am andgot home just after 8pm, which made it a very long day.The ultrasound was easy. Joshua did great laying still & cooperating. The results of the u/s were equally good ~ his kidneys look great. He's still notemptying his bladder completely when he pees & Dr. L said he doesn't think Joshua's bladder squeezes very well & that's why he's not emptying fully.The conversation then turned to how we are going to obtain social continence for my little boy. Since he has permanent nerve damage to his bladder &bowel, he'll never be able to be "potty trained" in the conventional manner. We've known that for years, but now that Joshua is 4.5 years old, Dr. L & Iwere discussing how we're going to achieve the goal of getting Joshua out of diapers someday. Bottom line is that it isn't going to be easy.We'll have to cath him 5-6 times per day & use Ditropan to prevent his bladder from spasming (which causes him to leak). The problem there is thatJoshua has abnormal sensation now (ever since his last detethering surgery on November 30, 2009), so cathing is extremely painful for him. Prior to hismost-recent detethering, he didn't feel it when we cathed him (in hindsight, this was a huge blessing & I wish it were that way again). Now, though, hescreams & cries & tightens up, which means it is nearly impossible to get a catheter through his bladder sphincter. Dr. L said that it wasn't a matter ofJoshua having normal sensation, because if that were the case, he could get used to cathing in time & it wouldn't be an issue. He said that Joshua hasabnormal sensation ~ almost like neuropathy ~ and because of that, cathing would most likely continue to be excruciating. I believe him because that iswhat we've found to be true & that is the reason we were given permission to stop cathing Joshua in March ~ he was peeing on his own & emptyingenough of his bladder that he wasn't getting infections, plus his kidneys weren't being damaged by reflux, so Dr. L let us give Joshua a break. Anyhow,because of the abnormal sensation Joshua now has, combined with the need to be cathed every 3 hours to prevent leaks, Dr. L suggested doing aumbilical continent vesicostomy, which is a procedure also called a Mitrofanoff (the only difference in what it's called is the tissue used to make the tubethat the catheter goes through). For those who are saying, "And I'm supposed to know what THAT is?" let me explain.Dr. L would take a piece of tissue (I can't remember what kind of tissue he said he'd use ~ part of the intestine, I think), roll it into a tube, stitch one endto the bladder & then attach the other end to the underside of Joshua's belly button, thus creating a tract for us to cath him through his belly button. Thiswould eliminate the pain of cathing & would also make it easy for Joshua to cath himself if he ends up using his wheelchair fulltime (he wouldn't have toopen his pants to cath). The question I did not ask, but definitely wonder about, is if Joshua would still potentially have accidents since Dr. L doesn'tclamp the urethra (so pee could still technically come out the normal way). I think that isn't supposed to happen if we're cathing every 3 hours & usingmedication, though. Still, it's something I need to find out about eventually.As for bowel continence, we had been told back in March that Joshua would require a MACE to achieve continence and that hasn't changed. MACE =Malone Antegrade Continence Enema. The appendix brought to the surface of the skin, where a small hole with a 'trap door' is surgically created to allowa catheter to be slid into the intestine & then saline drains from an IV bag into the large intestine. As the fluid moves through the colon, it pusheseverything out & then the rectum stays empty of stool for about 24 hours. It's a process that will require Joshua to sit on the toilet for 30-45 minutesevery night, but would prevent him from having poop accidents throughout the day.Though the MACE typically involves a stoma (hole) being made, Dr. L said that Joshua would get a mic-key button (identical to his g-tube button) toconnect his skin to his appendix because his connective tissue disorder would make him highly prone to stoma stenosis ~ where the hole would get toonarrow for a catheter to fit through and would then require surgery to open the stoma again. That made sense, but of course I had questions after I leftthe office (WHY can't I think of these while I'm sitting there? Argh!). I need to ask if there will be a risk of twisting Joshua's intestine if the mic-keybutton would get turned (since I know that's a risk if a child has a GJ or J-tube and this would be essentially the same thing, only the tube would be goingstraight into his large intestine versus his small intestine like a J-tube). I would need to find out the risk of bowel leakage into the gut should the mic-keybutton's balloon burst & the tube falls out. I need to find out the risks associated with the tube being pulled out fully inflated (this happened withJoshua's g-tube this week, which was a huge shock since it's the balloon that holds the tube in the stomach and I didn't know it could be pulled out fullyinflated!). I also need to ask Dr. L why he would do a stoma for cathing but not a stoma for bowel continence. If he's worried about stenosis of a bowelstoma, why would we not be concerned about stenosis of a stoma being used for bladder continence? Yeah... lots of questions. I'll get them all answeredbefore moving forward with these two surgeries (which will be done at the same time; the general surgeon does the MACE & the urologist does theMitrofanoff/umbilical vesicostomy).I asked Dr. L what he was thinking of as far as a timeline for doing these 2 procedures & he said that normally, he shoots for having a child out of diapersby the time they start school, but since Joshua is cognitively delayed & doesn't care that he's in diapers and I am in no rush whatsoever to do thesesurgeries, he is comfortable waiting up to a year to schedule them. He said that if things change ~ such as Joshua having trouble peeing on his own or ifhe starts being embarrassed because of his incontinence ~ I should give him (Dr. L) a call and we'll get things moving toward helping Joshua to get out ofdiapers sooner than next August.Adam asked how long recovery is and Dr. L said that most kids are in the hospital for a week after surgery. Joshua would have in-dwelling catheters inboth sites ~ bladder stoma for 2 weeks & bowel stoma for 6 weeks, at which point the catheter would be changed out for a mic-key button. I don't knowhow long it would be after surgery before we would start using the new stomas, but again, I'm sure I'll be much more-informed once the decision to goforward with these procedures is made.For now, I'm in no rush. Joshua doesn't care that he's in diapers and neither do I. I'm not eager to put him through two major surgical procedures at thesame time, so I'll wait until Dr. L tells me we need to do it, and even then, it's not something I want to do. I know we eventually need to get Joshuacontinent for bowel & bladder function, but I admit that this is one issue related to spina bifida that I really dislike. Cathing 6 times a day & sitting on atoilet for 45 minutes every night sounds like a hassle & I can't say I'm looking forward to having to implement the new routines into our lives. No wonderother parents with SB kids have a television or DVD player in their bathroom for their child to watch during bowel routine time! After talking with Dr. L, Iunderstand other SB parents' behavior a lot better.I wish Joshua would lose sensation in his groin again. I know that probably sounds terrible, but honestly, it would be so much easier if he didn't feelanything when we cathed him. Then he would not need to have the Mitrofanoff because we could cath him the "regular" way! Funny the things that aperson wishes for sometimes, huh? Charley and I were talking & we agreed that it's amazing to us how we were told when Joshua was a newborn that hewould have no issues other than needing to be detethered when he was about 5 or 6 years old, yet here we are, 20 surgeries + a port in his chest + ashunt in his back + a mic-key button in his stomach + facing a mic-key button in his bowel + facing a stoma in his belly button + using a wheelchairwhen we go out.... global developmental delays, cognitive impairment.... we decided it was a blessing we did not know what the road ahead would holdfor Joshua when he was a baby. It's probably a blessing that we still don't know. We've definitely learned to appreciate the good days Joshie has and tonever take anything he does for granted.Sign My Guestbook Read TributesTuesday, August 3, 2010 10:55 PM, PDTJoshua saw his pediatrician today for a surgery follow-up. We always do our follow-ups with Dr. S rather than drive all the way back to Portland just to have thedoctor look at the healing/healed site, smile & say, "Looks good!" So we saw Dr. S, she looked at the healed inguinal incisions, smiled & told me everything looks great.:) Then she sent an email to the urologist to let him know.Unfortunately, Joshua's weight was down (1/2 pound), so we talked about his eating habits. As I've shared before, Joshua is a social eater (eats when he sees otherseating) since he doesn't get hungry like a typical person. Lately, he hasn't been eating much, but I didn't really think about it until today. He typically skips dinner(though he sits with the family for the social interaction) and the ped surmised that's where the lost calories are affecting my boy.I know half a pound is not a significant amount of weight to lose and neither the pediatrician nor I are concerned; however, we agree that we don't want to let it go &see Joshua start trending downward.Soooooooo..... we're back to tube feeding him for meals he skips. He got one tonight (probably should have gotten one this afternoon, too, since I don't think half adonut actually counts as lunch, lol). It feels like a setback when he starts needing tube feeds again, but as always, I am thankful that we have the option of feedinghim via g-tube rather than having to stress about him not eating & trying to force him to consume food. It could be a lot worse, but it's not, & I'm exceedinglythankful for that.Sign My Guestbook Read TributesSunday, July 25, 2010 4:32 PM, PDTJoshua is feeling better today. I'm not really sure why he's so sensitive to fluid changes, but that definitely seems to be the culprit yet again.We've kept him inside today (it's over 100 degrees outside) & have been encouraging him to drink all day long. He's perked up & is playing legos in the family roomwith his brothers. :)His incisions look good, with no sign of infection or redness, and he hasn't needed any pain medication since last night. I'm relieved that he's healing well & that therewasn't anything wrong with him that some extra fluid couldn't cure. I like easy fixes like that!Sign My Guestbook Read TributesSaturday, July 24, 2010 11:51 PM, PDTIt was good to get home & Joshua slept well last night, but he has spent today being miserable with a headache that I assume is from low-pressure due to the location& severity. He threw up once & wanted to throw up many, many more times. He kept wanting his g-tube vented, but nothing would come out unless he had recentlydrank something, in which case the liquid would pour out. He wasn't interested in eating solid food today at all, though Adam did coax him into eating a gummy bear.We pushed fluids all day long and now I'm hoping that when he wakes up tomorrow, his headache is gone. If not, we'll get him through another (long) day and I'll callthe pediatrician on Monday. I don't know if this is *something* shunt-related or not, but I'm praying it's just a touch of mild dehydration & that he'll bounce backtomorrow, good as new.Sign My Guestbook Read TributesThursday, July 22, 2010 1:52 PM, PDTWe're back at the RMH. I'm sorry I didn't update, but I wound up not taking my laptop to the hospital this morning, so Adam updated facebook via his iPod touch, but I didn'tget to update here.Pre-op wasn't great. It wasn't the worst experience we've had prior to Joshua going in, but his anxiety level was pretty high. He had a tentative hold on "calm" until thenurse had to access his port, at which point he lost it and began crying hard. The LMX numbing cream didn't work, so accessing the port was painful, and then the needlewas the wrong size, so it stuck out about 1/2" and that made taping everything down painful, too. My poor little guy was having a hard time until we went downstairs & theanesthesiologist brought in the propofol. Just a little bit of that & Joshua drifted off to sleep and then he was whisked away to the OR.Surgery only took 1.5 hours and everything went well. Dr. L said the left side was really big & the right side was small, but he got both hernias repaired & now the onlythings to watch for are signs of infection or bleeding, neither of which are anticipated to be issues. The anesthesiologist used the right combination of meds & Joshua sleptuntil almost 12:30pm, then woke up gradually & without any crying (yea!) or vomiting (double yea!). The anesthesiologist also did a caudal block, which kept Joshua's groinarea numb for about 4 hours... just long enough for us to get discharged and back to the RMH (blech ~ I wish he could have stayed numb longer). Tylenol with codeine ishelping, but Joshua is fairly uncomfortable right now. He wanted to sit in his wheelchair, but found that to be too painful, so he's currently laying on the couch watchingtelevision, periodically squirming around as he tries to find a position that doesn't hurt.We'll spend the rest of the day staying low-key & just letting Joshua rest. Aside from being sore & having a tiny bit of nausea, he's in good spirits now that we're out of thehospital.Thank you for praying ~ I'm thankful that the surgery went perfectly & that we don't have to stay. We'll go home tomorrow (triple yea!) and get back to enjoying the rest ofsummer. :)Sign My Guestbook Read TributesWednesday, July 21, 2010 8:45 PM, PDTWe made it safely to Portland & the Ronald McDonald House. Let me tell you, this place is THE BEST and I am so grateful we can stay here. Instead of having to stay in ahotel room, we're in a house with our own room & bathroom and huge communal rooms ~ kitchen, dining room, tv rooms, library, computer rooms & play room. Oh, and abig playground outside. The people who work here are so friendly & do everything they can to make our stay here as stress-free as possible. They understand that everyfamily here has a child in the hospital for some reason & there is a warm kindness that permeates the whole house. RMH is a huge blessing not only for my family, but forall families who stay here.Joshua saw his urologist this afternoon & that went all right. We discussed the surgery & what to expect. Dr. L will make 1-inch incisions on the left side of Joshua's lowerabdomen, access the hernia, get the bowel put back where it belongs, sew up the hole that allowed the bowel to slip through in the first place, then close the incision.Then he'll do the right side and then he'll be done. Pretty simple & straight-forward. He doesn't anticipate any problems, which is always reassuring to hear.We talked about anesthesia and the very neatest thing happened: Dr. L asked me what we typically do with Joshua to help him before surgery! Amazing to have a doctorrecognize that my son's past medical history might affect how we approach things now & want to be prepared for that. Yea for awesome doctors!!! I explained how we didthings the last time Joshua had surgery to minimize his stress during the handoff between us & the anesthesiologist. Typically, kids get Versed, which makes them loopy &chilled out & then they don't care when the doctor takes them away from their parent. However, Versed doesn't do a thing for Joshua anymore & we've had a few reallyugly handoffs where he's clinging to me, screaming & crying, and we (doctors and myself) have to pry Joshua away from me so he can be taken to the OR. Definitely NOT agood way to go into a surgery! Last time, though, we had a new anesthesiologist who was a total sweetheart & he came up with a protocol that worked so well that it's mygoal to do it every time (as long as it remains effective) ~~ when we get to the hospital, a nurse accesses Joshua's port and gets it ready to receive IV medication/fluids.Then, once we go downstairs to the holding area where the anesthesiologist & doctor come in to have me sign consent forms & answer any last-minute questions, theanesthesiologist starts an infusion of Precedex, which is a sedative, and once Joshua is sufficiently chilled (as evidenced by my ability to lay him in his bed without himprotesting), the anesthesiologist administers some Propofol to knock him out & then he & his nurse & the doctor take Joshie back to the OR. Dr. L listened attentively andthen said that he'd call the anesthesiologist to make sure he knows of the plan & that he'd call short-stay to make sure there were orders to access Joshua's port. He toldme that it sounded like a great plan and since it had worked before, we should definitely do it again and he'd make sure everyone else was on board and knew what theyneeded to do.I can't tell you how relieved I was! This will be Joshua's first surgery with Dr. L and while I really like him in the capacity of urologist, I had no idea what he'd be like as asurgeon. I didn't need to worry. Dr. L was just as tender & gentle with Joshua today as he's always been. He asked Joshie for a fist-bump as he was leaving the room,saying, "See you tomorrow, buddy?" Joshua refused to answer (he was getting weepy and anxious since he realized what tomorrow is going to be all about), so Dr. L leanedover and kissed his cheek, saying, "That's okay; I'll give you a smooch, instead. It'll be okay, buddy." He's just such an awesome guy... very caring to my little boy, which issomething I appreciate so much. I've said it before, but it bears repeating ~ we are so fortunate to have such a fantastic team of doctors for Joshua who recognize him as anindividual & understand that he is not the average kid & therefore treat him according to his needs, not according to what "the norm" is. They listen to me & respect myinput, and they all seem to sincerely care about Joshua. For all of that, I'm most grateful.We have to be at the hospital at 7am & surgery is scheduled for 8:30. I would really, really, really appreciate prayers tomorrow morning for Joshua's peace of mind, for hisanxiety level to be LOW and for him to not be terrified. This afternoon, when I was changing his diaper before leaving for his urologist appointment, his lip was trembling &his eyes were filled with tears. I asked what was wrong & he told me he didn't want to go to the hospital. He calmed down when I assured him we weren't going to thehospital right now, but like I said, when we were at the urologist's, he realized what tomorrow was going to hold & he was very sad. I expect things to be fine once we canget him the Precedex infusion just prior to knocking him out, but I know from past experience that the 90 minutes we'll be in the hospital prior to that can be pretty roughand I am praying that God will comfort Joshua so that he won't be scared.I'll update after he's gone to the OR to let you know how the morning went. Thanks for thinking about Joshua & checking in.Sign My Guestbook Read TributesTuesday, July 20, 2010 10:03 PM, PDTTomorrow Joshua, Adam & I leave for Portland for a pre-op appointment with Dr. L, Joshua's urologist. Surgery will be at 8:30am on Thursday.I realize it's a minor surgery, especially compared to other surgeries Joshua has had in the past, but I've watched my little boy turn a 30-minute outpatient endoscopicprocedure into a 10-day hospitalization that included 2 major surgeries (abdominal & brain), so I don't necessarily find comfort in the label "minor" when "surgery" is theword that follows. I do know the odds are in favor of Joshua going in, having the hernia repaired, coming out & us leaving the hospital later in the day. I'm expecting thatto happen. But until we are walking out of the hospital with the surgery behind us, a part of me will remain on edge.As of tonight, Joshua knows that we are going to Portland tomorrow and that Dr. L is going to fix his hernia and he is 'okay' with the plan. He got a bit anxious and said hedidn't want to stay at the hospital and I reassured him by saying we'd have to go to the hospital for just a little while so Dr. L could fix his owie, but we wouldn't be stayingthere. As always, now that I've told him that, I'm praying that I didn't lie.We'll be staying at the Ronald McDonald House & Joshua is happy because he loves playing there, so that's something he's looking forward to.If you're someone who prays, I'd greatly appreciate prayer coverage for our safe travel tomorrow & for Joshua's peace of mind both tomorrow & on Thursday. He's beenthrough enough hospitalizations & surgeries that he knows exactly what "going to Portland" represents & his anxiety level rises as the day goes on. I hate that I can't takethat away & reassure him, no matter how hard I try. It is a lousy side effect of so many medical interventions, I guess. Anyway, it's almost 11pm & I have to be up at 6amso we can get out the door by 7 (we have to stop in Salem to do some adoption-related stuff on our way up), so I'll wrap this up for now. I'll post updates tomorrow &Thursday to let everyone know how things are going. Thank you for praying for Joshua once again.Sign My Guestbook Read TributesTuesday, June 29, 2010 8:03 PM, PDTSurgery will be July 22nd at 8:30am. Pre-op appointment the day before at 4:15pm. Joshua's urologist will be doing the procedure and will be doing both sides ratherthan just the left, as he said Joshua is at increased risk of developing a hernia on the right side, too, due to having both a connective tissue disorder & a shunt (whichraises intra-abdominal pressure as CSF is drained there).We haven't told Joshua about the upcoming surgery yet. He is old enough now that he understands what "surgery" means and he gets extremely anxious and worriedabout it, so we are opting to not tell him until a couple days before we have to go to Portland. No reason to stress him out for 3 weeks in advance.Sign My Guestbook Read TributesSaturday, June 26, 2010 10:54 PM, PDTWe had a trip to the ER this evening after Joshua woke up from a nap, screaming & writhing in pain. He couldn't settle down and his hernia was swollen, red & tender,so I called the pediatrician & got told to take Joshua to the emergency room NOW!We hauled booty to the hospital & got in with no wait. The ER doctor said there was some bowel/intestine that slipped into the scrotum & probably got twisted a bit,which cut off blood flow & caused the horrible pain. He was able to get the intestine pushed back into Joshua's abdomen, which prevented the need for emergencysurgery tonight and, as the doc put it, "buys us more time."The on-call pediatrician was, fortuitously, our regular doctor, so the ER doc conferred with her about the situation & they agreed that since the hernia could bereduced (ie: the intestines put back into Joshua's abdomen), there was no need for urgent intervention. Dr. S (ped) contacted the surgeon in Portland & I was told toexpect a phone call from her by lunch time tomorrow to tell me what the plan is.The ER doc said he thinks Joshua's connective tissue disorder has probably contributed to the problem and that's why he would feel better having a Portland doctordo the surgery. He said he isn't sure how they'll resolve the hernia completely if the connective tissue in that area is, in fact, weak & not holding well, buthypothesized that they might put in some mesh or something like that. I admit, I don't really know what the heck he was talking about since I'm not sure exactly howthe procedure is done, but I know our awesome surgeon in Portland will explain it to me in detail when the time comes to do it.The concerning part of the situation is that from last Sunday until earlier today, we could get the hernia to reduce simply by having Joshua lay down. But for somereason, now it herniates even when he's laying down. I asked the ER doc how we went from no hernia to a hernia that partially strangulates in 6 days. He admitted hedidn't know for sure, but guessed the connective tissue problem isn't helping the situation at all.He did tell us it was good that we recognized the signs of strangulation right away & took action to get Joshua to the ER without delay because if a person waits toolong, then by the time they do get to the ER, the hernia can't be reduced & is rock-hard & emergency surgery is needed (a procedure that carries a lot of risk). It'smuch better to get prompt attention for the strangulation, get it reduced so that surgery can be a planned thing without the increased risk of bleeding and infection.So as scary as this whole incident was, we were very fortunate that the ER doc was able to get the intestine back into Joshua's abdomen and avoid emergency surgerytonight.I am hoping that our Portland doc will be able to get Joshua in very soon to get this taken care of. It's hard to not see the little guy as a walking time bomb sincethere's no way for us to prevent another strangulation, so it's worrisome having to wait to get the surgery done. I know our pediatrician is working to get it done rightaway, though, and I know that if anyone can make it happen, it's her, so hopefully we'll get good news tomorrow. Yes, it feels strange to be characterizing surgery as"good news," but since it's the only thing that will stop Joshua's intestines from slipping into his groin, this procedure is something we're looking forward to gettingdone as soon as possible so that we can go on without having to worry about it anymore.Sign My Guestbook Read TributesFriday, June 25, 2010 5:19 PM, PDTJoshua has to have surgery for an inguinal hernia. Last Sunday (6/20), I thought the left side of his groin looked a bit swollen after he'd come in from playing in thesprinkler, but I kind of blew it off as nothing. In the following days, the swelling got more & more pronounced after he'd been standing or sitting for any length oftime & he began complaining that it hurt sometimes. On Wednesday evening, I noticed at a diaper change that the left side of his scrotum looked bruised in additionto the swelling, so I sent an email to our pediatrician to ask what she thought (she's off on Thursdays, which is why I didn't bother calling the office). She emailedback that I needed to bring him in today, but she thought it might be a hernia.When I took him in, she could feel loops of his bowel in his scrotum and told me that yep, Joshua has an inguinal hernia and would need to have surgery (we don't usethat actual word in front of him anymore because it shoots his anxiety level through the roof).Ugh & sigh.I know that in the grand scheme of things, a bilateral inguinal hernia repair (they'll do both sides even though he's currently herniated on just the left side) is not abig deal. Compared to the numerous neurosurgeries Joshua's endured, this day surgery is piddly. But surgery is surgery; pain is pain and I hate the idea of his havingto be operated on yet again.I'm thankful that it's not surgery for tethered cord or chiari or a shunt problem. I'm thankful that it should be just a day surgery & his pain afterward should beeasily managed (I say "should" since Joshua has shown us repeatedly that he doesn't necessarily do things by the book ~ his longest hospitalization to date began as anoutpatient surgerical procedure that was supposed to be super-easy, but was anything but). I'm just feeling bummed that surgery #20 is being scheduled for my 4year old.We don't have a date yet because even though this surgery could be done locally, the pediatrician would prefer to have it done by Joshua's regular pediatric surgeonin Portland (as would I) since they know Joshua's history and propensity to do things his own way rather than how he's "supposed" to and the general surgeon is bookedthrough July already. The ped said she is going to talk directly to the surgeon (Dr. Bliss) versus his staff and see if there is any way he can get this done soon. If heabsolutely can't, then she can try Joshua's urologist up in Portland and if he can't do it, either, then we'll get it done locally. The ped said this isn't something thatcan wait since the loops of bowel that slide into Joshua's scrotum could get strangulated, which is a life-threatening complication that we obviously want to avoid. Shefeels the sooner Joshua can get on the surgery schedule, the better.I'll update when I know a day & time (and location).Sign My Guestbook Read TributesMonday, May 24, 2010 7:35 PM, PDTToday, Joshua reminded his dad & me that little things can turn into 'bigger things' on the turn of a dime.After breakfast, instead of sliding off the chair to the ground, he tried to stand up (I think he was going to climb down or something) and promptly slipped & fell,landing on the back of his head. Hard. I watched it happen, but couldn't get to him quickly enough to stop the fall from occurring.After crying for awhile, he finally calmed down, but then spent the next 4 hours laying down & saying his head hurt any time we tried to get him to raise his head. Atone point, Adam took him from me so I could use the restroom & because he was upright in his brother's arms, Joshua began crying (real tears) and holding his head,wailing that his head hurt & he was going to throw up. We got him laid back down and the pain subsided to where he'd say his head hurt, but he stopped crying. Hewas drowsy and didn't want to move around at all.When we realized 4 hours had elapsed and Joshua was not perking up or acting anything resembling normal (for him), I called the pediatrician's office. The nurselistened to what was going on, went to confer with the doctor, then came back and told me that they didn't want us to bring Joshua to them; instead, we were to gostraight to the ER and get imaging on Joshua's shunt done.I reclined Joshua's carseat as far back as I could (so he was sitting at about a 60 degree angle) and after about 1 minute, he began crying that his head really hurt.Three minutes later, he was asleep. That made me nervous just because of the circumstances.When we got to the ER, they heard what had happened, looked at the listless boy being held by his big brother & took us straight back to a room. His heartrate wasjust 42 bpm & the nurse asked me if Joshua typically had bradycardia. I told her that nooooo, that wasn't his norm, but after she jostled him a little bit & turned thelights on (which he hated because they were hurting his eyes), his heartrate jumped up to 102, which was more reasonable, and then it stayed in the low end of theacceptable range, so they didn't worry about why it had been so low.His shunt was checked and seemed to be okay. A head CT was done to check for any bleeding & none was found, which was obviously very good to know. We spent atotal of 4.5 hours in the emergency department (right across the hall from a patient in the psychiatric area of the ED who was very unruly & had 2 policemen & 3security guards keeping watch, which made Adam & me wonder what on earth this guy had done prior to being brought to the hospital) and Joshua's diagnosis was aconcussion.Now we'll keep an eye open for chiari-type symptoms since Joshua's body has repeatedly gone into "freak out & produce way too much scar tissue" mode after a minorhead injury in the past & that has led to subsequent brain surgeries to remove the scar tissue & re-establish flow of CSF. We're praying hard that that doesn'thappen this time.Today's experience left both Charley & me feeling shaken. Yes, it was not a big deal & Joshua is going to be fine in a few days' (or weeks') time, but he's been doingso well (the boy has avoided going to the pediatrician for 2 months ~ the longest stretch he's ever had in his life) that we sort of forgot that 'little things' like abump on the head aren't always 'little' for Joshua. When he was laying on the couch, refusing to lift his head because it hurt, both Charley and I jumped to theworst-case scenario & began thinking of how we'd work out the details if Joshua had to get admitted or transferred to Portland (we're minus a teenager right nowsince Megan is in Colorado visiting a friend, so we would have had to do things differently than usual). It was the fact that we had to even consider the possibility thatJoshua might wind up in the hospital over this piddly little fall that was like getting hit in the face with cold water. We were reminded that no matter how well he'sdoing at any given time, he's still medically complex & things that our other kids can bounce back from without problem can cause serious problems for Joshie.I'm thankful tonight that Joshua didn't have any bleeding in his brain & that we are at home rather than sleeping in a hospital room. I'm praying that this concussiondoes not lead to any problems with scar tissue development & blockage of CSF. And while I'm thankful that this happened on Charley's day off so that I didn't haveto take all of the little kids with me to the hospital, I wish that I hadn't had to spend my Monday quite this way! I can think of a lot more fun things to do withJoshua than hang out in the ER for half the day. :)Sign My Guestbook Read TributesFriday, May 21, 2010 10:29 PM, PDTJoshua's g-tube has been giving him fits as of late. If the mic-key button gets bumped or moved a bit, he cries & whines & says it hurts. He is extremely defensiveabout his button, keeping his hand over it if anyone comes near and flinching whenever we lift the hem of his shirt during a diaper change. I've been watching &waiting to see if it was going to get better, but it hasn't. Then, earlier today, I realized that I could no longer turn his button a full 360 degrees. If you picture aclock, I can turn the button counter-clockwise from 12 o'clock to about 2 o'clock and then it gets stuck OR I can turn it clockwise from 12 o'clock to about 2 o'clockbefore it stops moving. If I try to force it a bit further, as soon as I let go, it goes back to where it was. The way it feels ~ the increasing resistance as I try to turnthe mickey ~ makes me suspect that he's got scar tissue adhered to the tube.I called the pediatrician first since she's my 'go to' person in situations where I am hoping to avoid having to go to Portland to see one of Joshua's specialists. As itturns out, we're fortunate because there's a wound clinic at the local hospital & they have 2 nurses who specialize in g-tubes & ostomy sites. The ped's nurse faxedover some orders & an appointment was set up for next Wednesday. They are planning to change his tube and ascertain whether it needs to be resized (longer tube orlarger/small diameter) & take care of it. I'm relieved we can get it done down here, but I'm worried that if there *is* scar tissue stuck to the tube, trying to removeit is going to be a painful, bloody mess like it was the last time this happened. I'm hoping that since the prior incident occurred in an emergency room where they hadto switch doctors 3 times because no one knew how to deal with a stuck g-tube and this time we're taking Joshua to someone who is supposed to be good with g-tubes,maybe it won't be so bad. 'Course, I don't really hold out a lot of hope for that seeing as how Joshua is freaking out when a family member is trying to just LOOK athis tube.... it would take a miracle for him to be chilled out when a nurse at a hospital is messing with it.Big sigh.In other news, Joshua has begun complaining that his lower back hurts when we are wiping his booty during messy diaper changes. He tries to stiffen his legs and notlet us bend his knees & push them toward his chest because he says it hurts. His scar is indenting again, he's not peeing as frequently, his lordosis (swayback) is morepronounced, and his stamina & speed are decreasing ~~ all of which are signs that he's becoming more symptomatically tethered again. I'm sure we're months awayfrom needing to do anything about it, but Charley & I are making note of what we're seeing. Since we've been through this so many times already, we are very familiarwith the signs.To wrap this update on a happier note, I guess now is a good time to share that Joshua is going to be a big brother. :) No, I'm not pregnant! Our family is adoptingtwo little girls from Eastern Europe (not sisters, but they're in the same orphanage) and Charley & I anticipate traveling to Ukraine to get them in a couple moremonths. The girls, who we will be naming Bethany & Hannah, are 2.5 years old (B) and 9 months old (H). They both have Down syndrome & heart defects, and Hannahmay also have cerebral palsy, but we won't know for sure until we get her back to the United States and in to see the specialists up in Portland.We're not crazy ~ really! We found out that in Eastern Europe, children who are born with special needs are not welcome in society. They have no value & there is nosupport for them, so parents are strongly pushed to place their babies in orphanages. Then, if they are not adopted by the time they are 4 or 5 years old (dependingon how poor the orphanage is), they get transferred to adult mental institutions (insane asylums), where they spend the remainder of their (typically) short lives incribs, sometimes tied down or straight-jacketed in sheets, where they get no attention, no love, no medical care & often no (or very little) food or water. It is adesperate situation for orphans with special needs in these foreign countries and Charley & I both felt led by the Lord to adopt our two girls out of this wretchedexistence, sooooo.... we committed to doing it and that's what has kept us busy since February. :)I urge you to go to and look at the faces of the many children waiting for their forever families.... see if you,too, are moved to want to help in some way. Even if you can't adopt a child, yourself, perhaps you can offer financial support to a family who is trying to adopt (hey,like us! LOL) or maybe a specific waiting child will catch your eye and you could donate to their grant fund to help offset the cost of adopting for the family thatcomes along to rescue him/her.I know adopting isn't for everyone, but for my family, we look at Joshua, David & Isaac and we cannot IMAGINE them being left in cribs in an insane asylum,surrounded by screaming/wailing/mentally-ill adults, simply because they have a disability. We look at the pictures of Bethany & Hannah and cannot consider leavingthem without a family. We consider ourselves fortunate that God led us to our girls and that we get to bring them home & call them ours.Sign My Guestbook Read TributesThursday, April 29, 2010 6:28 PM, PDTWhen Joshua got his g-tube waaaaay back in August, 2007, the gastroenterologist assured me that someday, my son would eat, probably around the time he hit 4 or 5years old, but because he didn't seem to have any sensation of hunger (complication after 1st chiari decompression), what we would see was something she referred toas "social eating." At the time, I didn't really comprehend what that meant & I wasn't overly worried about it. After all, 4 years old seemed a long way away when Iwas holding my then-17 month old.So.... fast forward... and now I understand what the gastro doc meant. Social eating, at least as it pertains to Joshua, means eating whenever you see other peopleeating, regardless of whether you have any room in your tummy to put food in there. When I serve dinner to the family, Joshua will sit & eat something, too. If we goto the store after dinner & he sees someone eating something he likes, he'll decide he's hungry, too, and will repeatedly tell us, "I hun-wee" because he has no cluethat his stomach is still full from dinner. He also has no real idea of how much he should eat. Sometimes he will eat 2 bites & proclaim that he's done because he getsdistracted by some activity that he would rather be doing. Other times, if no one is paying close attention, he'll overeat and then realize it when he feels the need tothrow up. If he's not handed cups of milk/juice/water throughout the day, he does not think to drink anything, which then leads to just enough dehydration to causehim to have a low-pressure headache.We're happy Joshua's eating, of course, because feeding him whatever we're giving the other kids is so much easier than having to tubefeed him & it's wonderful tosee him eating like a typical kid, but the lack of "hungry" and "full" feedback in his brain definitely makes things a bit more complicated than anything we'veexperienced with any of the other kids. Still, we're hopeful that one day soon, he will understand how this whole eating & drinking thing works and gets moreproficient at it. :)Sign My Guestbook Read TributesSunday, April 25, 2010 10:29 PM, PDTI'm sorry I haven't updated for a couple weeks. Have you ever gotten hit alongside the head with news that you just don't know what to do with? That's kinda whathappened after my 1.5 hour phone conversation with the neuropsychologist who did all of Joshua's cognitive testing. I thought about writing something here, but Ihonestly didn't know what to say. Truth be told, I still don't.It's not that the news is earth-shattering. It was more sad than anything else. Joshua is significantly cognitively delayed in pretty much every single thing he wastested in. Overall, his functioning is like that of a young 2 year old, which was hard to hear considering he's 4. The one thing the neuropsych wasn't sure about waswhether or not Joshua is on the autism spectrum. He has many signs/symptoms that point to 'yes,' but there's also the possibility that his complex medical historyhas contributed to the behaviors & mannerisms that seem autistic-ish (like that made-up word?). That is what Charley & I think is going on ~ that perhaps so manysurgeries & bad medical experiences in a short period of time has made Joshua decide that, outside of his family, people are not to be trusted. Combined with hisapraxia & cognitive delays & our family history of autism or Asperger's in 4 other siblings, it's not difficult to see why the neuropsych is leaning toward thinkingJoshua could be on the spectrum, too. She wants us to bring him back to Portland to see her & a developmental pediatrician so they can administer one more test thatwill determine one way or the other whether he's autistic or not.Admittedly, I was pretty stunned after my conversation with the neuropsychologist, but I'm okay now. Her report doesn't change one thing about Joshua. All it doesis clarify where his strengths & weaknesses are so that we can work more effectively with his therapists to help him develop skills that he needs, and that's a goodthing. I'm glad we did the testing; it was good to get a baseline of where Joshua is currently at (functionally).Right now, he's doing well. He's medically stable, which is a wonderful place for him to be. Aside from his port flushes (to make sure his port doesn't clot), Joshuahasn't needed to see a doctor/nurse for anything in over a month! He's playing, running around, laughing lots and generally just enjoying having this time to be atypical little boy. Yes, he's a delayed little boy, but HE doesn't know that.... and he's happy, which is all that really matters to me.Sign My Guestbook Read TributesTuesday, April 6, 2010 6:58 PM, PDTSorry for not updating sooner ~ life is very busy these days.Joshua's knee is FINALLY healed. It took 4 weeks on Clindamycin, but thankfully no hospital days, and now he's fine again.We'll get the results of his neuropsych testing this Friday (FINALLY!!!) and he had an OT evaluation today, so we'll be adding that therapy into his weekly schedule.It's apparent that having increased pressure against his brain for a couple of years negatively affected Joshua's cognitive development, but Charley and I feel thatthe testing, while hard to hear the results of, will ultimately give us a more clear idea of what Joshua's strengths & weaknesses are and enable us to better help him.Sign My Guestbook Read TributesTuesday, March 23, 2010 9:29 PM, PDTOkay, so here we are, just over 2 weeks past when Joshua began the Clindamycin to treat the infection in his knee, and instead of everything being cured, he's still gota red, puffy, sore knee & is getting fevers on & off. It's not incredibly swollen or super-red ~ I don't want to give that impression at all ~ but it's definitely not "allbetter".The infectious disease doc at Emanuel told me to take Joshua to the ped if the knee wasn't healed after 2 weeks on Clinda, so today I took Joshua to see our belovedDr. S. After examining his knee, she called the orthopedist, who told her to send Joshua right over to his office so he could look at the leg, so we headed out to seeDr. V. He checked out Joshua's leg very carefully & said to restart the Clindamycin & to watch his leg and that if there is any more redness or swelling in the next 24-48 hours, I am to bring Joshua back in so he (Dr. V) can numb the knee, drain it and then culture whatever's drained to grow out the bug & determine what, exactly, itis. I guess there's a possibility that the bug is MRSA since it's not being killed off by the Clindamycin.My understanding is that if the Clinda can't fully kill off whatever bug is causing the infection, Joshua will need IV antibiotics, so that would mean a hospitalization todeal with it, though I do think if it comes to that, I will inquire about the possibility of doing IV antibiotics at home since he does have a port & I do know how toaccess/de-access it. We'll see what happens. I'm still hoping (and praying) that a few more days of antibiotics will finish this bug off.Joshie isn't feeling too perky tonight, unfortunately. He hasn't been eating much these past few days & tonight, about an hour after getting a tubefeed, he threw itup.Anyhow, I don't know what, if anything, is "up" with my little guy, but figured I'd mention the knee in case it leads to something more.Sign My Guestbook Read TributesThursday, March 11, 2010 12:59 PM, PSTNeuropsych testing is done with & I'll hear the complete report from the doctor in a few weeks. It was tough to see just how much trouble Joshua has inpretty much every area he was tested in. I told Charley I don't know if I've been living in denial with regards to Joshua's functioning or what, but thepast two days have sharply jolted me into reality. I'll admit that I wasn't quite ready to have my eyes opened the way they've been. I'm not going to getinto specifics until after I've gotten the full report, but suffice to say that he didn't do very well and his brain has been much more-impacted by everythinghe's gone through than I realized and it was very, very sad to sit there & not say a word as I watched my 4 year old struggle.In better news, the Clindamycin is working to control the infection in Joshua's knee and when we saw the orthopedist today, she did not feel it needed tobe drained (thank you, God!!!). She gave a script for Lortab for pain so that Joshua can sleep at night and said that by the end of the antibiotics (14days), he should be fine. That was a huge relief, of course. :)He's got one more appointment today, with the neurosurgeon, and that should be nothing interesting ~ just a check of the shunt to ensure it's at theproper setting & discussion of how things are going with his back/head.We'll go home tomorrow and get back to regular life again, which will be a lot more fun than hanging out up here! LOLSign My Guestbook Read TributesTuesday, March 9, 2010 7:16 PM, PSTYesterday's appointment with the neurologist went just fine. She didn't have any idea why Joshua had the setback that he did after January's shunt incident, butshe agreed there are some new cognitive deficits to address and she is happy that we're doing the neuropsych testing this week because she is hopeful they will beable to pinpoint what is going on in my little guy's brain. She also wants Joshua to get back in to see the physiatrist and see if he has any ideas of how to tieeverything together as far as therapy & specific treatment goals. A physiatrist, for anyone who doesn't know but wonders, is a rehab doctor who takes care ofcomplex/chronically-ill people (he's the guy who did Joshua's EMG last year). The neurologist doesn't think Joshua's having seizures, so that was good news & a bigrelief. She isn't sure if his balance difficulty is neurological or muscular in origin, so again, she's hoping the neuropsych & physiatrist can differentiate things & get itfigured out.Today both David & Joshua saw our awesome urologist. Joshua also had a bladder & kidney ultrasound. David gets to avoid surgery (yippee!!!), but Joshua does not,although his won't be for another 6-12 months. He'll need to have major abdominal surgery to bring his appendix to the surface of his skin & have an opening made (astoma) so that we can put a catheter into the stoma & flush his intestines with warm saline every night in order to clean him out and keep him continent (so he won'thave poop accidents). It's a procedure known as an antegrade enema (MACE). Instead of putting the fluid in through the booty and cleaning out just the lower part ofthe colon, the fluid goes in through the top of the intestines and pushes everything out the booty into the toilet and will keep him poop-free for about 24 hours.As far as getting Joshua continent for pee, the urologist said he thinks Joshie will eventually get into underwear by cathing & taking Ditropan (a medication that willrelax his bladder walls so that he won't pee in between cathing); however, his bladder sphincter is very tight and cathing is incredibly difficult and hasn't gotten anybetter since his last spinal cord detethering surgery 3 months ago, so Dr. L wants to assess what's going on with Joshua's bladder fully so that if he needs a surgicalprocedure, he (Dr. L) can do both the MACE & the bladder surgery at the same time rather than 2 separate surgeries.Sigh.I knew that getting kiddos with spina bifida socially continent can be a challenge, but since it hasn't been anything we've talked about in-depth until today, I kind ofjust glossed over it in my mind & didn't give it a lot of thought. Today's appointment had a different 'flavor,' though. Dr. L was just as kind to my boys as always, butthis was the first time we've chatted about how we're going to get Joshua out of diapers ~ now that he's 4, getting him out of diapers gets put on the "to do" list inthe urologist's mind ~ and it was a lot of information and things to consider. Dr. L says his goal is to have Joshua in underwear by the time he is 6 & when I asked if itwill really take 2 years to get to that point, he said yeah, it can. So.... pretty sobering. I have to admit, a part of me feels lazy and thinks, "Eh, I don't care that he'sin diapers!" But I do realize that eventually, some day down the road, Joshua will care, and I don't want him to be embarrassed about being in diapers when his peersaren't, so I'll do what is needed to get him to this big milestone.In other news, just over a month ago, Joshua fell & skinned his right knee. No big deal, as he falls & skins his knees on a regular basis. Then, in typical Joshua fashion,he kept reinjuring the knee (falling repeatedly) & the wound got bigger rather than smaller. Again, this wasn't a concern and when the pediatrician saw it back whenJoshua was in the hospital, she gave me antibiotic cream & told me to just keep an eye on it, per usual, & watch for signs of infection. Fast forward to Sunday night,when Joshua's knee sort of "blew up" ~ it was quite swollen, hot to the touch & red. If we hadn't had to come to Portland, I would have had Joshua in to see thepediatrician first thing Monday morning. As it turned out, though, I showed the neurologist his knee & asked her if she could get someone to come look at it so Iwouldn't have to sit in the Emergency Department for hours. She was so sweet & called Infectious Disease to come take a peek, and we got Dr. J, who is a superpersonableguy. He said that he didn't think the infection is in Joshua's joint, but it's definitely full of pus in the bursa and his concern was that it might be a staphinfection, which could spread to Joshua's port & shunt, and THAT would be very, very bad & would get him admitted to the hospital for a long time (something weobviously want to avoid). He prescribed a strong antibiotic for staph (Clindomycin), thankful that Joshua has a g-tube because otherwise there'd be no way we couldget him to take this stuff, and told me that if Joshua developed bloody diarrhea I needed to get him to the ER right away (possible, but rare, side effect that isextremely serious). Then he gave me his pager number & told me to call him for updates every day. The pharmacy dispensed five bottles (!!!) of this (expensive)antibiotic and we went back to the RMH for the night.When I called Dr. J this afternoon after we got back to the RMH from seeing the urologist, I let him know that Joshua's knee was still as swollen as it was yesterday& he's saying it hurts when we touch it, but it's not as red. He was concerned that the knee is now painful since Joshua has so little sensation in that part of his legand he hasn't complained of any discomfort up until now. As a result, Dr. J will be seeing Joshua tomorrow morning to determine whether the knee will need to bedrained. He said that if it seems the infection is deeper than he had suspected, he'll send Joshua to see the orthopedist & that a surgical procedure may end up beingnecessary. Total yuck and totally NOT what we want for Joshie-boy. Double sigh. I talked to a friend who helped me put it in perspective when she said, "It'd bebetter/easier to have surgery on his knee and get the infection cleaned out than to have it spread to his port &/or shunt and then need surgery to have THOSE pulledout, weeks of IV antibiotics where he has to have multiple IVs placed 'cuz you know he'll blow them repeatedly, and then surgery again to replace the port &/or shuntagain." Gotta say, she's right. Still, I'm hoping & praying that the antibiotics control & clear up the infection and that Joshua can avoid needing surgery for this.Since he's never had an infection, which is absolutely amazing considering how many surgeries, procedures & wounds he's had, this is all a new realm of experience forme.I told the ID doc that I felt pretty stupid for not realizing Joshua's knee was badly infected & he told me that I had no way of knowing it was going to blow up (hiswords) the way it did, so I shouldn't beat myself up. Then he told me he'd talked with our pediatrician today to let her know he'd seen Joshua & that he would becalling her tomorrow to keep her apprised of the situation, as well. Talk about an awesome doctor! In case I haven't said it recently, I'll say it now: the doctors atLegacy Emanuel are wonderful & I am SO thankful that we have such an amazing team of professionals to take care of Joshua. We had to go to St. Vincent Hospitalfor Joshua's bladder ultrasound because our urologist was at his office next to that hospital today (he has 2 offices) and let me tell you, the difference in thepersonnel's attitude was stunning (and not in a good way). Being there for just one hour made me exceedingly thankful that we come to a Legacy Health Systemhospital rather than a Providence hospital.Joshua took a 2.5 hour nap after we got back from his appointments & now is in a happy mood. He knows he gets to go do therapy tomorrow (I didn't know how else toexplain neuropsych testing to him) and hopefully he'll be very much "himself" so the doctors get an accurate picture of his strengths & weaknesses. I haven't told himhe is seeing Dr. J again since he gets anxious about that, so I'll wait until the morning to break it to him that he has to have his knee looked at again. I am prayingthat he doesn't need any kind of treatment past the antibiotics since we told him he wouldn't be having surgery or any owies this trip and I REALLY do not want him tothink he can't trust us. Also, I'd like him to have a pain-free experience up here for once.Sign My Guestbook Read TributesSaturday, March 6, 2010 7:30 PM, PSTJoshua had a really great birthday on March 2nd. He ate birthday cake for the first time ever & loved opening his presents. It was a very normal celebration for ournew 4 year old, which was, in & of itself, unusual but very welcome.Joshua's doing well. He never did get back to where he was pre-January 22nd, but he's making progress forward again with the help of physical therapy & speechtherapy and that's what matters.This next week, we'll be in Portland for appointments with the neurologist, urologist & neurosurgeon. Joshua will also have 7 hours' worth of neuropsych testing(divided over 2 days) to establish a baseline of where his functioning is currently at. David has an appointment with the urologist, too, so he'll be coming along for thetrip. It'll be a busy week, for sure, but hopefully one that will yield encouraging results.Sign My Guestbook Read TributesThursday, February 18, 2010 9:21 AM, PSTJoshua is feeling better. Through a series of doctor appointments & phone calls up north, the assumption being made (since no one knows for absolute certain) is thatJoshua could have a tiny CSF leak where spinal fluid is leaking out around the shunt catheter where it exits his dura and the dura hasn't healed properly, whichcontributes to intermittant low-pressure symptoms (headache, vomiting, lethargy).Sooooo..... not much we can do about it, unfortunately, but it does appear that if we keep Joshua adequately hydrated (not as easy as it should be), that helps.One of our pediatrician's partners is friends with a geneticist at the Mayo Clinic in Rochester, so she (Dr. Hough) said she'd email him to find out how to get thingsstarted for Joshua. I think they'll mail his chart (including his chart from Portland) to Rochester and then some team evaluates things and determines who Joshuashould see. Something like that! Anyhow, I'll just wait for a phone call and go from there.Dr. Wehby has a neurosurgeon she knows & trusts in San Francisco who she is going to refer Joshua to for a second opinion type of arrangement. She'd like to seewhat a fresh pair of eyes thinks about my son's situation ~ maybe someone new will offer a perspective no one has considered yet.So... that's where we're at. We have Zofran to give Joshua as needed, we'll continue with his therapies and we'll pursue the other opinions after things get set up.Sign My Guestbook Read TributesMonday, February 15, 2010 6:30 PM, PSTJoshua's shunt is still set at 2.0, which is good, yet doesn't give us an answer. His blood pressure was 135/84. The high pressures whenhe's upright/low pressures when he's lying down are now being considered a concern & the nephrologist will be called tomorrow toconsult about it. Um... what else... oh, the med team in Portland would like Joshua to be seen at the Mayo Clinic in Rochester, MN.According to Dr. Paisley (head of pediatric medicine at Emanuel), it's time to get a fresh set of doctors evaluating Joshua to figure outwhat the doctors at Emanuel are missing. Our ped got a call & letter from Dr. P and she just called to talk to me about it... apparently, myson is 'extremely complex' and they (neurologist, neurosurgeon, gastroenterologist, geneticist, physiatrist & Dr. Paisley) think getting theexperts at Mayo might help. I asked the ped what the docs there (@ Mayo) would do that hasn't already been done and she admitted shedid not know. I also asked how we were supposed to finance such an endeavor and, again, she did not know. She asked if, at the veryleast, we'd be willing to take Joshua across the river to OHSU to see if the doctors there had any fresh ideas to look into.HOW did a "possible shunt problem" turn into THIS???I told her that I wonder if maybe the problem is Joshua's blood pressure and not his shunt at all since his pressure goes up when he'supright, but normalizes once he's lying down. She said that was actually a possibility (high blood pressure can cause headaches &nausea/vomiting), so she wants to look in that direction now, in addition to still keeping the idea of "shunt" on the table. She said that isconcerning because it could indicate a renal problem & in light of him being on diamox for so long, a kidney issue is not out of the realm ofpossibility.The plan is to give him 1 ounce of pedialyte per hour overnight to keep him somewhat hydrated and then I'm to call the pediatrician &neurosurgeon in the morning & we'll go from there.Sign My Guestbook Read TributesMonday, February 15, 2010 2:29 PM, PSTHeading to Medford to have an adult neurosurgeon take a quick look at the setting on Joshua's shunt. If it's not still at 2.0like it's supposed to be, I'm assuming he'll reset it and then we'll have to go back up to Portland. If it *is* at 2.0, I don'tknow what the plan will be. I'll update when we get home.Sign My Guestbook Read TributesMonday, February 15, 2010 10:26 AM, PSTI don't know what's up with my youngest. He's not interested in eating more than a few bites a day & when we try to tubefeed him (just 4-5 ounces), he immediatelythrows it up.Today he's got a headache. He's chosen to lay down for most of the morning because of it.I don't know if this is a sign that the valve has slipped again & is overdraining once more or what. I called & left a voicemail for the neurosurgeon, but she's in surgerytoday, so I probably won't hear anything from her until tonight or tomorrow. Our pediatrician is aware of what's going on & is trying to help us manage symptoms. Shedoesn't really know what else to do & is waiting to hear what the plan is from Portland.That's all I know right now, but I wanted to update Joshua's journal so that people will be praying.Sign My Guestbook Read TributesThursday, February 11, 2010 12:51 AM, PSTTonight I am feeling discouraged. Joshua's got some definite deficits as a result of his most-recent hospitalization & I don't know if they're going to get better ornot. Well, I'm guessing they'll improve eventually, but he's taken two steps backward and that is always disappointing.His gait is "off". I don't really know how to describe it except to say that it's different than what it was. He can't run anymore. He walks *very* slowly. He ischoosing to crawl around the house about 50% of the time versus walk at all. His right foot turns inward & he doesn't put his big toe against the ground at all when hetakes a step ~ he bears weight on the outside edge of his foot and sort of limps to keep the amount of time he spends on that right foot to a minimum. His hips aremuch looser now & therefore his gait is more wobbly. He keeps his feet wider apart and locks his knees more for balance. The end result is that his walk looks strangeand it's slow. VERY different from before January 22nd. His balance is off, too, and he often leans into a wall for support, trips over his feet, and stumblesbackward or staggers to the side as though someone tilted the floor unexpectedly.Our physical therapist expressed concern that going for so long with too-little CSF flowing around/through his brain (a result of the low pressure from the shuntover-draining) might have caused some neurological damage. She said he lost quite a bit of muscle tissue in his lower half this go-round, which is different from thepast hospitalizations where he's laid in bed for 2 weeks. I'm not sure why there's such a difference, but it is apparent just by looking at his booty & legs that they'remuch smaller. She wants to give him another week or two to see if things improve substantially, but agreed with me that it was disconcerting to see such big changesin Joshua's functioning, especially from something as piddly as a shunt problem. She asked me to make an appointment for Joshua with his neurologist, which I did.Then there was today's visit to the speech therapist, where confirmation that Joshua has apraxia was made and, after listening to him interrupt himself with "da duhduh duh" sounds before starting up his sentence again a couple of times, she asked me if anyone in Portland had seen any signs of seizure activity while we were there.I told her about the shaking episodes we'd witnessed & asked why she was asking. She informed me that the nonsensical noises we were hearing could be miniseizures. Greeeaaaat. She, too, recommended a visit to the neurologist & was pleased to hear an appointment had already been made. I was feeling less pleased.Then we came home & found that Joshua could no longer remember how to log himself onto the computer. This is a skill he's had for at least a year. He learned totype the password to log himself in & has never had a problem doing it, even after previous hospitalizations that lasted the same length of time (or were longer) thanthe most-recent one. Someone explain to me why he can't do it anymore because I don't understand what has happened.It doesn't make sense to me that his speech & walking & balance took such a huge hit. He didn't have major surgery! There was no reason for this to happen, wasthere? Does low CSF pressure potentially cause this kind of fallout? I refuse to believe that we had 7 incredible, awesome & almost-perfect weeks that showed uswhat Joshua COULD be like only to have it taken away for good. This has to be a temporary setback (I refuse to believe otherwise), but still, it's fairly discouragingbecause we've never seen him NOT make improvement in the first week of being home, and that's what's happening now.Not all is terrible; he's eating better & not throwing up, and his bladder & bowel are working again, so we're not having to cath him or use enemas, and that's all good.He's cheerful and not hurting, which is great. It's just the changes in his balance, speech & walking that have his therapists, his father, & myself stymied. We'll workto get him back to where he was and then progress from there, but the rational, logical part of me wishes I could understand what, exactly, happened to cause thechanges we're seeing so that maybe we could prevent it from ever happening again! What I'd really like it for Joshua to get better & then to just stay that way. Forgood!Sign My Guestbook Read TributesFriday, February 5, 2010 2:14 PM, PSTSorry for the lack of updates. It's been a challenging few days.On Monday, we flew to Portland & Jenny reprogrammed Joshua's shunt. He was given a bolus dose of Decadron & then began receiving the steroid every 6 hours.On Tuesday, after beginning to show signs of improvement in the morning, Joshua deteroriated in the late afternoon/evening. He had more pain, headache, could notraise his head off the bed & was extremely agitated.On Wednesday afternoon, after a rocky morning, Joshua experienced what the doctors classified as a "psychotic episode". He screamed for over 3 hours, thrashing &writhing around, kicking, biting himself so hard he bled, scratching everyone/everything around him, etc. It was terrifying to witness. He was given a plethora ofmedications to attempt to break him out of the hysteria, but he kept fighting off everything he was given. Ultimately, the psychiatrist that was contacted by thehead of inpatient medicine suggested giving a medication that I was told is typically used to calm out-of-control adult mental patients (how UNreassuring). It did workto calm Joshua, but he had a tentative hold on that state and remained on-edge & ready to fall apart again for the next 24 hours. He had a second, less-intense "fit"later that evening, but it only lasted about 20 minutes and he didn't need more zyprexa to break him out of it. The assumption is that the psychotic episode was areaction to the steroids Joshua had been receiving, and those meds were discontinued immediately. Interestingly, when Dr. Wehby came in during the middle ofJoshua's episode, she checked his shunt setting and found that once again, it was not at the proper setting. She again reset it and decided the shunt valve needed tobe checked the next day.On Thursday, Dr. Wehby fixed Joshua's shunt ~ she said that the fluid from the valve was flowing nicely, but he was overdraining (which is what was causing hishorrible headaches & backaches) and there was CSF leaking around the catheter.By Thursday evening, with his shunt now working & set properly (and the valve not slipping anymore), Joshua was feeling significantly better, needed no pain meds, andI requested (and received) an 18-hour pass for us to go spend the night at the Ronald McDonald House. Joshua stayed pretty low-key, finally began eating again (thechild had FIVE 4-ounce pudding cups! LOL) and was much, much happier!This morning, we had to go back to the hospital, where Joshua was examined & I discussed a few episodes of shaking that Joshua's had since Wednesday. The nursesaw the first on Wednesday evening, after we'd gotten him calmed down, but she & I both attributed the full-body shakes to the psychotic episode he'd just had. Hehad 4 episodes yesterday ~ 2 at the hospital and 2 more last night ~ but discussion with the head of inpatient medicine led to our agreeing that we're bothcomfortable taking a 'wait & see' approach for a few days. If the shaking is seizure activity, it'll continue & then we'll take Joshua to see his neurologist for furtherevaluation. If it's related to the medication he was given or some other benign cause, it should go away.His walking is very "off" right now, too, but again, we're chalking it up to his being in bed for two weeks. Joshua's PT will see him and evaluate things and if shefeels there's some underlying problem that needs to be taken care of, I know she'll let me know.He's still got some blood pressure concerns (it raises significantly when he's upright), but the assumption is that once his CSF pressure normalizes again, his bloodpressure will, too. He's throwing up randomly, too, depending on what he's eaten ~ harder-to-digest stuff like eggs gets vomited, but easy-to-digest stuff like puddingstays down, so we'll be starting his erythromycin once we're home to remind his gut that digesting food and pushing stuff through the GI tract is a good thing! Thegastroenterologist is pretty confident that things will get back to normal within a few weeks. She said that Joshua's body always seems to need to "reset itself"after being in the hospital & having surgery or any other big procedure. We all know she's right, so we know how to handle it. She gave us a new script for Zofran tobe given every 8 hours for the next few weeks and then, hopefully, he won't need it anymore.So, at this time, we're being given a 48 hour pass to the Ronald McDonald House, where we'll keep an eye on Joshua's progress, and as long as nothing concerning popsup, we'll head home on Sunday! :)Sign My Guestbook Read TributesMonday, February 1, 2010 10:18 PM, PSTJoshua & I are safely in Portland. Joshua did pretty well on the flight, though he got uncomfortable toward the end & by the time we gotto the hospital, he was miserable with head & back pain. When we finally laid him in bed, he threw up.Jenny (PA) came upstairs in between surgeries to check the setting on Joshua's shunt and was surprised to find it was not at the correctsetting. Interestingly, she checked the setting 3 times & got a different setting each time. She & Dr. Wehby did not have an explanationfor why that happened, so they just chalked it up to being "a Joshua thing". That's a joke, by the way ~ any time something happens thatno one can explain, they say, "Well, it's Joshua!" and we all collectively shrug & move on.He's on Decadron to reduce inflammation, ativan for agitation & antibiotics for the fevers he's been spiking. The IV team came in and tortured... I mean,de-accessed his port & then re-accessed it. It took a male nurse, Adam & myself to hold Joshua down while the IV team did their work. Despite havingAtivan to calm him, Joshua still screamed & bucked & writhed the entire time. Afterward, when we were all able to let him go, Joshua laid in the bed &shook violently as he continued sobbing. It was heartbreaking.Now, any time anyone touches his IV tubing, he freaks out completely. Even though it isn't going to hurt to put meds in the line, he cries & wails, "Ow! Ow!Ow!" the entire time the nurse is near him.We're hopeful that the steroids will reduce any inflammation in his brain & spinal cord & that resetting the shunt will be the "fix" Joshua needs. If he isn'tperking up substantially by tomorrow afternoon, the neurosurgeon will rethink things. She'd prefer to find a non-surgical solution, but if Joshua doesn'tstart getting better, she'll replace the shunt & we'll go from there. Now, however, we're going to bed. This was a day of major suckitude for Joshua & Ifeel badly about everything he's gone through the past 10 days. I'm too tired. He's too sad. My heart hurts for him tonight. It's hard when even "simple"procedures become complex & I am praying hard that tomorrow will find him bouncing back to the Joshua we've had for the past 7 weeks. I want him tofeel good and be happy again.Sign My Guestbook Read TributesSunday, January 31, 2010 9:39 AM, PSTJoshua's continuous feeds backed up on him last night (he wasn't digesting them, but we didn't realize it) & then, while we were changing his portdressing, he puked up about 8 ounces of formula plus his undigested-after-5-hours dinner. It soaked the port, which was not protected by a dressing,even though Adam, the nurse & I were all trying to keep the puke off of it. PLEASE pray for no infection to develop from this mishap. An infection of hiscentral line is the last thing Joshua needs!Sign My Guestbook Read TributesFriday, January 29, 2010 5:20 PM, PSTJoshua (and I) will be flown to Portland on Monday morning, bright & early. The Mercy Flight team will be here to get us between 6 & 6:30am so that Joshua can beadmitted to the peds floor at Emanuel by 9am, per the neurosurgeon's request. Once there, he'll be assessed by Dr. Wehby & a course of action will be determined.Joshua remains stable here at the hospital in Medford, which has been a blessing. We'll continue the "holding pattern" for a couple more days and then, hopefully,we'll need to spend just a few days in Portland before heading home again.Sign My Guestbook Read TributesSunday, January 24, 2010 1:22 PM, PSTOkay, so the plan NOW is that we're going to stay here until Dr. Wehby gets back from Haiti unless Joshua becomes critical, in which case he'll be flownto OHSU for immediate surgery. The kidney doc initially wanted the diamox stopped, but the pediatrician negotiated him into agreeing to keep Joshua onthe medication because without it, his blood pressure will escalate to dangerous levels. The risk to his kidneys is that as his bicarb drops (and thenephrologist said it should continue to drop slowly ~ if it suddenly bottomed out, that would be an emergency situation for HIM to deal with), his kidneysare compromised. However, the risk to his brain if they stop the diamox is greater than the risk to his kidneys if they continue giving the diamox, soooo...they're going for brain over kidneys. Reducing the dose (which is what the 2 nurses had told me they thought was what Dr. Conway was trying to get thenephrologist to agree to) would be useless because there wouldn't be enough medication to lower the blood pressure adequately AND he'd still havebicarb problems. So the nephrologist and pediatrician decided to just stay the course we're on and monitor things really closely.As long as things stay stable, the plan is to transfer Joshua to Emanuel the day before Dr. Wehby would operate to do his shunt revision, which wouldhopefully mean he gets transferred on Friday and has surgery on Saturday.There are benefits to being here locally ~ private room versus shared noisy PICU room, Charley can bring the kids to visit, our local friends can visit, Ihave my van so I can run to the store if needed, etc. So here's where we'll stay as long as Joshua doesn't tank, and adjustments will be made to hismedications, fluids and the like to keep him stable until the neurosurgeon shows up.It was definitely lousy timing for a shunt failure, that's for sure! I'm thankful, though, for good doctors here who care so much about Joshua and aretaking excellent care of him.Sign My Guestbook Read TributesSunday, January 24, 2010 10:34 AM, PSTStill waiting to learn what the gameplan is. The ped said first thing this morning that he was transferring Joshua & left the room to go make calls to set it up. Thenhe came back 10 minutes later and said that the PICU intensivist thinks we should keep Joshua here until Dr. Wehby gets back into town because they (Emanuel PICU)won't do anything different with him in ICU than what is being done down here. OHSU doesn't want him because he's not one of their patients & he's medicallycomplex,and the PICU doc said no one wants to send Joshua over there if they can help it. The PICU doc wants the doctors down here to work at keeping Joshuastable until Friday, when our neurosurgeon gets back from Haiti. I asked what the odds were that she'd get off a plane and be able to come straight to the hospital(and do we WANT her operating on probably very little sleep???)... the doc conceded she'd probably wait to do surgery on Saturday at the earliest. But they'dtransfer him up on Friday to have him in the hospital when she gets back to Portland. She (PICU doc) recommended another CT be done today.So then the ped called the nephrologist (kidney guy) to ask him about the bicarb & danger to Joshua's kidneys. As I expected, Dr. Jenkins said to stop the diamox.The ped, however, negotiated a lower dose (I THINK ~ the nurses told me that was the two doctors' conversation, but I haven't heard the result of the conversationfrom Dr. Conway (ped) yet ~ he will be back in here to talk in a bit). I know they're re-drawing more labs later. If he's taken off diamox completely, his painmedication will be increased. I was also told that taking him off the diamox completely will cause his blood pressure to go up even more, which is why the ped wantedto keep him on it, even at a greatly-reduced dose.So, as it stands right now, as of 10:45am, I do not know if Joshua is getting transferred up to Emanuel today or not, but I'm betting on "not". The only thing I knowfor sure ~ 'cuz the ped told me so ~ is that Joshua will remain inpatient until he can get his shunt revised. That could be another week, or, if he tanks fast and OHSUis forced to take him, could be soon.I know we don't have a clue how this is going to play out, but God does, He's in control, and therefore I honestly am not worried. All I want right now is for everyoneinvolved to be on the same page because what I *do* find stressful is being told mixed information.Sign My Guestbook Read TributesSunday, January 24, 2010 7:52 AM, PSTJoshua's bicarb is down to 17 this morning, his blood pressure has gone up throughout the night & he's still spiking fevers. The ped is outside getting report from thenurses now & will be in in a minute to talk. The nurses are getting increasingly concerned and think it's time to transfer J to Portland. We'll see what the docs say. Ithink if we go, he'll be at OHSU because our nsg won't be back from Haiti for another 6 days.Sign My Guestbook Read TributesSaturday, January 23, 2010 4:26 PM, PSTI started to update earlier today and then got sidetracked by all that's going on here. This is what I wrote this morning:I'm requesting prayers for Joshua, who is acting as though he never got a shunt & the past 7 weeks of awesome never happened. He's not peeing on hisown, having to be enticed to drink 5-10cc's at a time (1-2 teaspoons), and won't sit up because it makes his head/back hurt. The diamox is helping, buthis bicarb was at 18 after the first 2 doses (17 or lower means his kidneys aren't tolerating the med).~~~~~~~~~~~~~~~~~This is what is going on now:Joshua spiked a fever, which brought on concerns of port or shunt infection. Labs were pulled off his port & they showed a white blood cell count that waslower than last night's (when he didn't have a fever, go figure), so it's most likely NOT a shunt/port infection (phew). His bicarb is still at 18 (thankfully).The newest concern? His blood pressure is normal when laying flat, but goes VERY high VERY quickly when sitting upright or reclined slightly ~ we hadto change his bed, so Adam held Joshua on his lap and the nurse did his vitals there while I changed the sheets. She did the left leg (165/81), then theright leg (164/85) and then the nurse waited a few minutes, got Joshua reclined a bit more, opened his diaper to make sure the blood flow through hisfemoral arteries wasn't being impeded by a too-tight diaper, and took his BP again. This time it was 211/119 and his heartrate was up to 154 (and he wascompletely calm the whole time, so it wasn't high because he was distressed)! She immediately laid him flat on the bed because she was concerned hewould begin seizing and that's where he's been ever since.We noticed he was sitting in a a weird twisted position & he is laying in that same position, as well, and then we saw that he had tucked his arm under hisside in order to keep the shunt valve that's in his back off the mattress. I suggested that maybe the twisted position while on Adam's lap was toaccomplish the same purpose ~ keeping his valve from being pressed on at all. The new prevailing theory is that when he is more-upright, the valve ispressing against a nerve or something that is affecting his blood pressure (some parasympathetic nerve or something like that), as it is quite obvious apositional thing.The doctor here today (who is wonderful ~ she's both a pediatrician and a hematologist-oncologist) is waiting until the most-recent dose of tylenol wearsoff to see if Joshua's fever spikes again (it came down to 99.4 on tylenol) and then she's going to call Dr. Sibley to get her back in here to check Joshuaout since she (Dr. S) knows J so well.It's looking less like a shunt infection and more like either a shunt obstruction or the shunt valve moved. Either way, it is making sense to everyone nowwhy Joshua refuses to sit up. Having his blood pressure go from 105/54 to 165/85 & then 211/119 in the space of just a few minutes has to be painful.The big concern is that his BP kept rising the longer he was upright.Obviously, he's not getting discharged today. I'll update again when I know more.Sign My Guestbook Read TributesFriday, January 22, 2010 9:46 PM, PSTJoshua's in the local hospital tonight with a shunt obstruction. I only have a minute right now, so I'll update more tomorrow. Bottom line is that our neurosurgeon is inHaiti, the adult neurosurgeon covering her practice does not want to touch Joshua, and the PICU doctor suggested putting Joshua back on Diamox as a "band aid" untilour neurosurgeon gets back into town next Friday.If he were shunted for hydrocephalus, a shunt obstruction could become life threatening, but since he's shunted for intracranial hypertension, a shunt obstructionmakes him miserable as the compression on his brain & spinal cord causes a lot of pain, but it isn't a life threatening situation at this point (and he'd be in Portland if itgot that bad).That said, the PICU doctor said that if Diamox works to alleviate Joshua's pain, we can go home and lay low until we can get in with Dr. Wehby when she gets back intotown. However, if he continues to go downhill, he'll be flown up to Portland and *someone* will operate, even if it means convincing one of the pediatric neurosurgeonsat OHSU (hospital across the river) to do it.Gotta go, but wanted to let everyone know what's up.Sign My Guestbook Read TributesThursday, December 31, 2009 6:31 PM, PSTTime for an end of the year update!Joshua is, thankfully, still doing amazingly well. Putting in the shunt has made a tremendous difference in his life and I am so happy we did it despite thepoor prediction for success. I realize it could still obstruct or get infected or malfunction in some way (maybe lots of times), but for today, it's workingperfectly, so that is what I'm focusing on. One day at a time around here! :)I was analyzing why Joshua suddenly got SO much better and came up with the hypothesis that all of the loss of function that we (his medical team, myhusband & I) had attributed to nerve damage could very well have been a symptom of cord compression. After all, by definition, Pseudotumor Cerebri isan increase in the pressure within the cerebrospinal fluid that, in turn, presses against the brain & spinal cord. So I think it's logical to believe that theincreased pressure from PTC was the root of the repeated declines that could not be attributed directly to chiari or tethered cord.Of course, I don't know if cord compression is the explanation or not, but I thought I'd toss it out there as my best logical guess. It doesn't really matter,though; the end result is the same ~ my little boy is healthy, happy & doing better than ever!He is still peeing & pooping on his own (I cath twice a day for residuals & he doesn't need medication or a daily enema) & he's eating well, too. He'srequired just two tube feeds in the past ten days (yeaaaaa!!!) and he is not needing his medication to help him digest food at all. He is walking, running,climbing & generally being "all boy".After starting the year with a decline that led to Joshua's medical team stating they believed he had a neurodegenerative condition and the subsequenttesting for everything under the sun, it's unbelievable, amazing, incredible & SO much fun to now be in this place of health & happiness with my littleboy. He needed the break. Truth be told, we all did, and I am thanking God so very much that my family gets to end 2009 on such a spectacular "high".Sign My Guestbook Read TributesMonday, December 21, 2009 4:20 PM, PSTI took Joshua to get casted for his new AFOs today & when the orthotist saw him walking around, he said something amazing ~~ Joshua doesn't need towear braces right now!He is able to dorsiflex his feet now (pull them upward when he takes a step) and that is something he hasn't been able to do for the past 18 months orso. Do you realize the significance of this? His loss of dorsiflexion was caused by nerve damage as a result of tethered cord & it was assumed to bepermanent! The orthotist said in awe, "This doesn't happen! We don't see this!"Then he had Joshua run & we were all blown away. Joshua has always run with a limping gait, as his right leg has been weaker than his left since he wasabout 6 months old. Again, this weakness was due to nerve damage causing his muscles to not be innervated properly. Well, now he's running normally,with no limp whatsoever! He's not Speedy Gonzales, but he's substantially faster than he's ever been before.This change is incredible. Our orthotist said it was "nothing short of miraculous." He & his wife both got misty-eyed watching Joshua, and Charley & Icouldn't stop beaming as we showed off our new little boy.The change in him is indescribable. I wish I could come up with words that would adequately express just how amazing all of this is. He's going potty byhimself without cathing or medication or enemas. Yes, he's still in diapers, but to have him going without assistance is incredible! He's eating & drinkingso well that he hasn't needed a tubefeed yesterday or today, nor has he needed the medication that he typically gets to help him digest food ~ his body isdoing it all alone, and that hasn't happened since he got his g-tube at 17 months of age! He's running without a limp! He can flex his feet upward andhold his feet straight (no rolling out), so he doesn't need to wear braces on his feet! Charley & I had the fun of taking Joshua to buy a 'real' pair of shoestoday! He's been wearing shoes specifically meant to accommodate AFOs, so we haven't had to buy shoes for him (our insurance covered the ones ourorthotist ordered). But this afternoon, we took Joshua to Target and got him a little pair (size 9!) of running shoes ~ and they're SO CUTE!!! :) I get tobuy him regular socks, too, rather than AFO socks! :)I thank God for the miracle He's given us. Truth be told, I am dancing around, praising Him & grinning like a fool every time someone comments inabsolute amazement about how well Joshua is doing. Yeah, maybe there's a logical explanation for why my son suddenly has the physical ability to dothings he hasn't been able to do for years (or ever!), but it doesn't matter to me. To see Joshua playing and talking and running (!!!) and eating andgoing potty and not needing braces and not needing medication for ANYTHING is so incredibly amazing it falls into the category of 'miraculous' toeveryone who knows how he used to be and is seeing how he is now & I absolutely agree with them. This is a miracle we've been given.... and we'regoing to enjoy every moment of it for however long it lasts!Sign My Guestbook Read TributesSaturday, December 19, 2009 10:33 AM, PSTAfter a week home, I'm happy to report that Joshua is doing very well.He saw his pediatrician this past Wednesday & she actually got teary-eyed as she watched my little guy play & interact with his brother (Isaac). Joshua is 40.5 inchestall (almost the 90th percentile) & weighs 35lb,2oz (50th percentile). Aside from some low-pressure headaches that are resolved after laying flat for 2-3 minutes(these are to be expected after placement of the LP shunt and could continue for another 4-6 weeks) & some occasional nausea/vomiting, Joshua is feeling great.He's happy, playful & talking up a storm. His imagination has taken off & he spends hours every day playing with his Playmobil figures & legos, conducting elaborategames & plots. He is sleeping in his own room for the first time in his life (versus with his dad & me), he dances & laughs with his brothers & sisters, and he poutswhen the world doesn't go his way ~ just like a typical 3.5 year old! He's eating and drinking really well & requires just one tubefeed per day now, too!It's nothing short of heartwarming to Charley, me & the rest of the kids. We're so incredibly thankful that the shunt worked & that Joshua is feeling so good now.We are praying for no shunt obstructions whatsoever & for this good period he's in to last.... ohhhh.... forever!!! :)Sign My Guestbook Read TributesSaturday, December 12, 2009 10:46 PM, PSTMusic is really important to me, and God often speaks to me through songs. Prior to each hospitalization of Joshua's, Godalways "gives me" a song or two that speaks to my heart and encourages me. This time, the song He led Charley to wasKutless "What Faith Can Do". Charley shared it with me and I listened to it every day. It's a song that now has a specialmeaning for me.When we got home today, Adam took the song & added pictures from the past two weeks to make a video for me. It isbeautiful (I think) and I wanted to share it with you all. To watch the progression as Joshua went from hurting to healing togiddy happiness is amazing. My Guestbook Read TributesSaturday, December 12, 2009 3:21 PM, PSTWe're home! It was a longer-than-usual drive due to inclement weather, but we arrived safely and were greeted by fiveVERY enthusiastic children. :DIt is great being here. I always know I miss my kids, but it isn't until I am holding each of them and smelling their hair andkissing their cheeks that I realize JUST HOW MUCH I missed 'em all.Sighhhhh (happy)Joshua is doing well. He showed everyone his incision and let them feel the shunt tubing around his side. Megan says youcan tell he's happy to be home. She's right. This is where he belongs, and it feels really good to be together with all of mykids and my husband once more.Sign My Guestbook Read TributesWednesday, December 9, 2009 6:55 PM, PSTWe've been sent on a 48-hour pass to the Ronald McDonald House. On Friday at 1:30pm, we'll see the neurosurgeon and she'll reprogram Joshua's shunt(if necessary) and then we will get officially DISCHARGED to go home!!!It feels really good to be here at the RMH and out of the hospital environment. We have to be here for 48 hours to ensure that Joshua can maintain hisfluid levels adequately since that has been a problem for him in the past. The neurosurgeon also wants us to stay close to the hospital for a few moredays to make sure Joshua's shunt is set at the right level ~ we'll be watching for headaches & nausea/vomiting & pain that isn't relieved by tylenol withcodeine. As long as that isn't a big problem, she'll leave his shunt set where it's at & send us home.I don't foresee any problems ~ Joshua is happy & feeling good. He's in his wheelchair and has only needed one dose of pain medication so far today. I willupload some pictures tomorrow to show you all just how good he looks. I know you all think you've seen Joshua looking happy, but wait until you see himnow. The absence of pain always makes him almost euphoric. He's giddy and giggly and it's such a HUGE relief to see him this way again. We're hoping itlasts a really long time.So... we'll be home on Saturday (Charley will get up here Friday late afternoon and we'll leave Saturday morning). I can't wait to sleep in my own bed,but it's going to be really wonderful to sleep in the double bed in our room tonight without any nurse visits or beeping to disrupt our slumber.Adam, Joshua & I are all happy tonight!Sign My Guestbook Read TributesMonday, December 7, 2009 10:59 PM, PSTToday was a good day overall. The morning started off rough, with Joshua's port being de-accessed & then re-accessed (theIV team does this once a week to minimize the risk of infection of the central line). It's a process he truly hates because ithurts. Once that was over with, I dared to give him a tubefeed when he didn't want it, so he was pretty grumpy about that,as well. He did eventually settle down, though, and from then on, he had a good day.He had three 7-ounce feeds and tolerated all of them just fine. He also drank 7 ounces of chocolate milk & ate a Pizza Hutbreadstick. It was a successful food day. That goal of 44 ounces per day (plus or minus a few ounces) is getting closer. :)Joshua sat at a 45 degree incline for most of the day without too much difficulty (he'd scoot down in the bed when he didn'twant to sit up anymore) and this evening, Adam & I got him into a wagon for about 30 minutes. He was uncomfortableduring the transfer from the bed to the wagon, but once we had him situated, he did just fine & enjoyed going out of hisroom.I think there's a definite chance he'll be discharged in the next day or two, which is exciting news for my family (and me). Itwill be really nice to get home and sleep in our own beds & be able to hug ALL of my kids again. We hep-locked his porttonight (just before taking him out in the wagon) to assess whether he can take in enough fluids on his own to preventgetting dehydrated. If he can, and if he can sit up long enough to get home before needing to lay down again (4.5 hours),then we'll be able to get out of here! Saying prayers & crossing fingers & all that other good stuff in the hopes it happens.Adam, Joshua & I are ready to be done with the hospital for awhile.Sign My Guestbook Read TributesSunday, December 6, 2009 9:27 PM, PSTAnother up & down day. Joshua had a lot of nausea after his 6 ounce feeds today, but no vomiting (still have one more feed to give him at 10:00pm, so that statuscould possibly change). He sat at 30 degrees for most of the day & was able to sit upright with Adam's help for a few minutes, too.He fell asleep a bit before 7pm and then woke suddenly, wailing with head & back pain & retching. After not having any pain meds for 36 hours, he absolutely neededmorphine to deal with the level of pain he was having. He also got zofran to stop the retching. The nurse put the head of the bed back to laying flat and said weneeded to keep Joshua down for the rest of the night.I know he's making progress, but any setback is still a disappointment. I'm not accustomed to Joshua needing morphine once he's been off of it for over 24 hours, sothis was a new thing for him. The neurosurgeon said that the shunt would cause some pretty intense headaches for a few weeks & I now see what she was talkingabout. I feel so badly for him when he's hurting and there's nothing I can do aside from buzz the nurse to come drug him up. I am so hopeful that Joshua will soonnot need any pain meds at all. I pray I'm not being unrealistically optimistic.Sign My Guestbook Read TributesSaturday, December 5, 2009 11:43 PM, PSTJoshua had a really good day up until 9:30pm. He had tolerated three 5.5 ounce feeds without incident. He sat at a 30 degree incline for a little over an hour beforecomplaining that his head hurt & needing to lie down again. He sang with the music therapist and was happy for 95% of the day.Then he had his fourth feed of the night, another 5.5 ounces, and he puked it all within 5 minutes. Forty-five minutes later, he drank some milk and threw it up, aswell.Sigh.He's asleep now, resting comfortably. I can't figure out why the fourth feed was a problem for him. It'd been 4 hours since his last feed, it was the same volumehe'd been getting all day in his other feeds, and he was perfectly calm while getting the feed (sometimes, if he's agitated or crying, that causes him to vomit). Hisnurse chalked it up to Joshua being Joshua. I'd like to think there's a reasonable explanation, something logical that I can point to, but maybe the nurse's hypothesisis the only one there is.I'm hoping & praying that what happened tonight is not going to continue into tomorrow. It was a psychological setback to have Joshua throwing up tonight when he'dbeen doing so well over the past two days.Sign My Guestbook Read TributesFriday, December 4, 2009 9:58 PM, PSTToday has been a good day (as far as being in the hospital goes).Joshua has tolerated three 5-ounce tubefeeds, has his bed inclined 5 degrees with no headache, can almost roll over to his side by himself, and hasgenerally been content & cooperative all day.My friend flew back home this afternoon, so now Adam & I are on our own again, which is fine. We're a good team. :) It was nice having Heather here,though.The plan for the weekend is to slowly advance feeds both in frequency & volume while maintaining Joshua's pain control with morphine. We're going tolet him determine how much he gets his head raised up since he's the one who knows when it hurts & when he feels okay.Dr. W, her P.A. the nurses & I are all pleased with how today has gone. Joshua is taking baby steps, but they've all been in the right direction today, sothat makes everyone happy.Sign My Guestbook Read TributesWednesday, December 2, 2009 9:15 PM, PSTDr. W did rounds early this evening and when she came in, Joshua was fussing because his back hurt. She had me come outside the room to talk to her (Adam &Heather were still with Joshua) and Jenny (her physician's assistant). She asked me what the heck was going on, so I told her all about the day. She gave me a hug &told me not to worry about it; she was going to take care of things.She had Jenny write new orders stating that Joshua is to get morphine through the weekend, he is to remain lying flat & we are not to push feeds if he is showing anysigns of nausea. Then she got Joshua's nurse and had a chat with her (yes, while I was standing there), letting her know about the new orders she was having Jennywrite. She explained to the nurse that Joshua has a 5 inch incision, a shunt, he's having pain from the tubing being tunneled under his skin, and he is completelydifferent from any other lipomyelo kid they have ever had. When the nurse gave a little, "Really?" in disbelief, Dr. W raised her voice slightly and challenged thenurse, asking, "How many lipomyelo kids have shunts, much less LP shunts?" The nurse admitted she'd never seen one & then she totally shut up except to agree withwhatever the neurosurgeon said from that moment on. Dr. W then asked when Joshua had had his last dose of medication and when I told her it'd been 2.5 hours, shelooked at the nurse and said, "Well, then he's ready for more. Go get it. I want him kept comfortable and not crying, because the more he cries, the worse thingsget." The nurse scurried off and Dr. W looked at me and said, "There ya go, Honey."Before she and Jenny took off, Dr. W gave me another hug and told me that if there are any more problems with any other nurses, tell them to call her and if theywon't, then I should call her & tell her what is going on so she can take care of it. She said that we (motioning to herself, Jenny & I) know how Joshua is, so let's justdo what we know we need to do and not push things. Of course I thanked her for the affirmation & for setting the record straight with the nurses for me. After theextremely crappy day I'd had, having the neurosurgeon come along and back me up was exactly what I needed.I think a lot of people don't realize that while the day of surgery is stressful, it's 48+ hours out that's harder than the actual day of surgery for Joshua. The firsttwo days after surgery, he's pretty gorked-out, sleeps a lot, and when he is awake, he's still not completely 'with it'. But around the 48 hour post-op mark, he iswaking up more completely, so he's more aware that he hurts and is therefore more grouchy. We start feeding him and that starts the nausea & vomiting (almostalways). He has crying/screaming/retching jags that last over an hour each time. I'm tired, he's tired, he's miserable, my nerves get frayed & my patience growsshort. Toss in a nurse or two who don't listen and want to treat every child 'by the book' even when they meet a child who is anything BUT 'by the book' and thusrequire me to spend twelve hours babysitting them as well as tending to my child and ya know, it's a lousy situation. It's at this point in every hospitalization that I hitan emotional low. And even though I know it's going to happen, I still don't know how to prevent it or how to handle hitting that wall any better.I know this isn't about me; it's about Joshua, and honestly, I AM focused on him 98% of the day & night. I don't blame him for being grouchy & I wish I could make itso that he didn't have to go through this horrible stage every time he has surgery, but nothing we've tried in the past has worked yet, so I'm pretty much out ofideas, as is everyone else. We just sort of slog through until he starts feeling better, so once again, I'm praying that time comes soon.Sign My Guestbook Read TributesWednesday, December 2, 2009 3:59 PM, PSTJoshua's morning has been rougher than it needed to be and I'm a bit frustrated by it.We have a competent but uncaring nurse this shift. She thought Joshua should go down to just tylenol with codeine today simply because "it's been 48hours since surgery & we always move detethered kids to tylenol after 2 days" (nope, she's never met Joshua before), and when I told her that wasn'tgoing to cut it for my kid, she thought I was just trying to keep Joshua on narcotics unnecessarily. That led to me telling her to go call the neurosurgeonNOW and find out what HER orders are for my kid. She did and found that Dr. W wants Joshua to still get morphine & fentanyl, not just T3. I hate itwhen a nurse who doesn't know my child refuses to LISTEN when I'm trying to explain how my child is different from the norm & why we do thingsdifferently with him and, as a result, my child suffers for her pigheadedness.Moving Joshua causes him tremendous pain ~ he can't roll from his side to his back by himself yet, even ~ so when his diaper leaked (he was leakingurine around the tiny catheter they had in him) and we had to change the chux pad & towel he was laying on, it really hurt him. We had just got himsituated & calmed down when a CNA came in to give Joshua a sponge bath. I told her I thought he was okay, but she insisted, so I relented and told hershe could wash his legs, but leave the rest of him alone. Long story short, she ended up getting the clean chux pad & towel soaking wet, whichnecessitated moving Joshua again so we could lay down clean/dry stuff again, and THAT led to his intense crying because his back hurt and then hestarted throwing up, which made him hurt worse. He got into a cycle of retching and crying and because his pigheaded nurse thought he didn't needanything more than tylenol with codeine & hadn't yet called the neurosurgeon to confirm that I'm not a moron & yeah, my kid could still getmorphine, Joshua had to wait longer than necessary to get the pain relief he needed to help him to settle down.So... the morning was frustrating.We've given him a couple tubefeeds (2 ounces pumped in over an hour) and he threw up the first, then kept the second one down but retched a lot andWANTED to throw up (but couldn't). We vented his tube & gave zofran to stop the dry-heaving, but it continued for about 20 minutes after there wasnothing coming out of his g-tube. What we surmised was that the pressure of the fluid draining from his shunt into his belly may have been pushingagainst his stomach, which was contributing to him feeling nauseated. The right side of his stomach and around his side are pretty squishy and swollen,which the nurse told me is from fluid draining and not being resorbed quickly.The foley catheter is out and I'm back to straight cathing 5 times a day, which is fine because it's one more step closer to normal (for us).One last thing for now ~ a clown came by & gave Joshua a red nose, some crayons & a peacock feather, which my little guy is using to poke thenurses when they come in to bother him. LOL He is feeling pretty feisty when he's not hurting.Sign My Guestbook Read TributesTuesday, December 1, 2009 12:41 PM, PSTLast night, not long after I posted, Joshua projectile-vomited bile despite having his g-tube venting continuously (it was draining into a diaper) & receivingIV zofran. A few hours later, he vomited a few more times and then had some thick greenish gunk mixed with blood that poured out of his g-tube whenhe cried/vomited. No one knew last night what it was. No one knows today what it was. It's been saved in the diaper it drained into so that thegastroenterologist can examine it. It continued for a couple hours & then tapered off. The blood is assumed to be from irritation caused by beingintubated. The green color is bile, but the big question is what is the creamy substance that the bile was mixed with. It's a little mystery no one has yetfigured out.There was concern this morning because he's not making a lot of pee (only got rid of 155ml in 12 hours) & the question of whether diamox might haveaffected his kidney function was raised. A bedside bladder ultrasound showed a majorly-distended bladder full of urine & a kinked foley catheter. HOW itgot kinked inside him is anyone's guess. What they told me was, "Well, Joshua does do things his own way." Not the most-reassuring answer, but really,the only answer for how it happened is, "I don't know. It just did."It took 2 hours to get a new catheter in. We tried straight cathing him with no success. We just could not get the catheter in since he was so overdistended.I tried a few times, 3 nurses tried, and finally the charge nurse got a tiny (6 french ~ it's the same size as a feeding tube used in NICU fornewborns) foley catheter in, so now he's got pee draining very slowly, but at least it's coming out.Labs have been drawn to check his bicarb level & other kidney function tests, the IV team will come later to change his port dressing (he HATES that),and both GI & neurosurgery will be in later, as well.I clamped his g-tube at 11am and we'll see how he does ~ whether he moves the gastric juice down through his intestinal tract or if he starts puking itup. It'll give us an idea as for when we'll start trying to feed him again.The neurosurgeon's P.A. came in and reprogrammed Joshua's shunt, which was an interesting thing to watch. It's a special magnet that's used to set theshunt to the drainage level they want. She said it will probably take a few adjustments to find Joshua's "sweet spot" ~ the perfect drainage level for him.All in all, it's shaping up to be a typical recovery for Joshua, but maybe things will turn around for the better and surprise us all.Sign My Guestbook Read TributesMonday, November 30, 2009 1:57 PM, PSTHe's out of surgery & doing well. Dr. W said his spinal cord was pulled to one side by scar tissue & twisted, which is why he was hurting so much.The shunt was placed at the T12 level, just above where his previous scar ended. The tubing goes around his right side, just above his hip, and he has a tiny incision inhis belly. Overall, he looks really good.Thank you for praying for Joshua.Sign My Guestbook Read TributesMonday, November 30, 2009 11:48 AM, PSTNurse just came by. No real news; they're still working.Sign My Guestbook Read TributesMonday, November 30, 2009 9:49 AM, PSTUpdate from the OR: Joshua is stable. Dr. W has Joshua under the microscope & is working away. It's slow-going, as he's got a lot of scar tissue. Once he'sdetethered completely, then she'll start the shunt placement. No idea how much longer it will be.Sign My Guestbook Read TributesMonday, November 30, 2009 9:02 AM, PSTWhen we got to the hospital this morning, Joshua was whimpering & he kept it up, with a few bouts of intense crying in-between, interspersed withrequests to "go home now" or "go back to the Donal Ronal House," until we went downstairs to pre-surg.Once there, while I was cuddling him, the anesthesiologist came in and started an infusion of a medication (the name of which I absolutely cannotremember & it's driving me nuts! I know it is pre... something) to chill Joshua out, and then, right before they took him to the OR, he gave Joshuapropofol, which knocked him out. Charley, Adam & I were able to give Joshua kisses before they went, and then he was taken away peaceful & sleeping.Thank you for praying ~ that handoff could not have been any more perfect.We're now in the surgical waiting area, where we'll hang out until this is over.Sign My Guestbook Read TributesSunday, November 29, 2009 6:57 PM, PSTWe are at the Ronald McDonald House, where we have just finished eating pizza. Charley & Adam are watching CSI: Miami while Joshua plays with his Playmobilpeople.The anesthesiologist called to talk about tomorrow & to go over some changes that are being made this time around.First off, I have to say that I was SO happy to hear that the anesthesiologist for tomorrow is Dr. Rose. He's my favorite & he truly cares about Joshua ~ he's beenthe doctor who has worked with Dr. Wehby during several of Joshua's surgeries and he's also been the one who puts Joshua out for many of his MRIs, so he knows mylittle guy pretty well. He's the doctor who came up with the new concoction of meds for Joshua's MRIs 3 weeks ago that allowed Joshie to wake up without tons ofscreaming & throwing up (a first for him). So, all this babbling to say that I am so relieved he's going to be the anesthesiologisttomorrow. Between him & Dr. W, I know Joshua will be in excellent hands.Dr. R said that he wants me to put EMLA on Joshua's port first thing in the morning & he's going to have one of the IV team meet us in short stay so they can accessJoshua's port. Then, when we go downstairs to pre-surg, Dr. R will come in and give Joshua "something that will make him happy & not care that he's being taken awayfrom you." I told him that sounded perfect! He responded that he sees no reason to traumatize my kid any more than he has to (see why I like the guy?). So anyhow,he'll do what he can to ensure that the handoff goes easily, which is a huge relief for me. I'd still appreciate people praying that the handoff DOES go smoothly, withno tears or fear for Joshua.Dr. R also said that he is going to use a different anesthetic this time. He told me the name, but I didn't really catch it (it started with a P, but was not propofol oranything I've ever heard of before). He said that the anesthetic causes a much-longer waking up period, so Joshua will be in recovery much longer than usual, but thegradual waking up often eases the way for children who have had frequent surgeries and he thinks that it could be a really good anesthetic to use with Joshua.He mentioned, "You know this will be a long surgery, right?" Since I had no idea that that was the expectation, I answered, "Well, I know that detetherings CAN takea long time, yes." He answered, "No, this one is GOING to be a long surgery. It will go at least 4 hours; that is what Monica told me, but it can go longer if we get inthere and there's as much scarring as she is thinking there will be. I'm telling you this so that you aren't sitting in the waiting room worrying if four hours go by andwe're not done." I told him I understood & I wouldn't worry & I knew that Dr. Wehby would give updates as she went along. I reminded him that we've had severalsurgeries that went over the predicted time period & he gave a small laugh, saying he remembered well the surgeries in the spring of 2007 (surgery was expected totake 4 hours but ended up taking 8).I feel very comfortable with the team that will be in that operating room tomorrow. The anesthesiologist & his team of nurses are great and I know the neurosurgeon& her team of assistants are fantastic. We've got the 'dream team' going in, so that makes me feel as confident as is possible tonight.Sign My Guestbook Read TributesFriday, November 27, 2009 11:42 PM, PSTNow that Thanksgiving is over, there's not a lot to detract my thoughts from focusing on Joshua's upcoming surgeries on Monday. I'm finding myself morenervous this time. Not about the spinal cord detethering. That doesn't stress me since it will be the 5th time Joshua's had the procedure done, so I feellike I pretty much know what to expect. I know something surprising could come up, but I don't expect that to happen at all. As for the shunt, however,I'm feeling less certain. Oh, I'm not worried about the surgery to put it in. I have full confidence in our neurosurgeon & I expect no complications duringthe surgery itself. It's what happens afterward that has me feeling uneasy.I know I need to have faith that the shunt will solve the problem of his increased intracranial pressure, but with the odds being just 50/50, it's not soeasy. The words, "this is our last option," reverberate in my head & don't do much to instill a sense of optimism.I'm reading my Bible & praying, of course, and I do find comfort in the promises of God. Despite that, however, I still have times when I am scared. Iwant so badly for the shunt to work. I want an end to the roller coaster that my little boy & the rest of my family have been on for the past 3 years.Damn. Three years. I typed that and thought, "Is that right? Has it been three years, really?" Sadly, it has. Joshua first started showing symptoms ofchiari & tethered cord when he was 8 months old and he is now a few days away from being 3 years + 9 months. Since then, it's been a pattern ofsurgery leading to improvement & stability, which leads to increasing symptoms & an overall decline starting up again which eventually leads to moresurgery. On average, Joshua has gotten 4 to 6 weeks of feeling good (ie: no pain, vomiting or other symptoms) before symptoms begin again. It's a sadway for a child to live. His therapists are amazed that he's not further behind in development than he is. After all, it's difficult to learn new things whenyou're puking a couple dozen times every day or when you've got excruciating headaches or moving makes your back hurt. The fact that Joshua functionsas well as he does is a testament to his strength, resiliency & high tolerance for pain.I desperately want him to be one of the people for whom a shunt is successful in treating pseudotumor cerebri. I want this to be the answer to myprayers ~ the solution that allows Joshua to get more than a couple months of relief. I don't know if my hopes are realistic, though. I know he'll continueto produce too much scar tissue & that will cause his cord to tether & become symptomatic more rapidly than normal. I know he will face surgery toaddress bowel issues eventually. His days of having surgery are not going to end after Monday's procedures unless God steps in and miraculously healsJoshua of all his conditions. Do I believe that could happen? Yes. God can do all things. Do I think it's going to happen? No, not really. Perhaps that will beconstrued as a lack of faith on my part, and maybe it is, but 18 surgeries in 3 years (and 19 total ~ the first was done when Joshua was 7 days old) havea way of convincing a person that God is allowing this all to continue for a reason and doesn't have plans to step in and wipe it all away any time soon.I'm not saying He can't or won't. I'm just admitting that it doesn't seem likely to me.I wish I had the kind of faith that would have me proclaiming in all sincerity that I was completely at peace and whatever God wanted to happen, well.... Iwas fine with that! I don't, though. I know that Joshua belongs to God. All of my children are on loan to me and I get the privilege of raising them, butthey ultimately belong to God, so He can do in their lives whatever He wants & I can't control that. I understand that basic truth. But I still am wrestlingwith the idea of acceptance in the form of saying, "Your will be done, God. No matter what."The truth is, I want God's will to be done if the outcome is a good one. But if the road for Joshua is not going to be long, or if this pattern that he's beenin for the past three years is not ever going to end (or is going to get worse), then I'm not at a place where I can accept that graciously. I want my son'ssuffering to end, but not with his death. I want it to end & for him to be able to live & learn & laugh & enjoy life like every little child should get to do. Iam extremely well aware that there are a multitude of children who suffer due to chronic illness, dire living conditions, extreme poverty, etc. My heartaches for them, but it cries for my son because I love him & it is brutally painful to watch him hurting but know there is nothing I can offer aside fromsome medication & being held.There has to be an end to this cycle, right? Eventually a time is going to come when he either gets better or he doesn't. Joshua's neurosurgeon believeswe are at that point. The shunt is our last option (this opinion is supported by several other reputable neurosurgeons around the country). Either it'sgonna work or it's not. If it works, he could still wind up in the operating room on a regular basis due to the shunt becoming obstructed with the scartissue that everyone expects he will continue to overproduce as a result of the connective tissue disorder he has, but at least he would not be screamingor moaning in pain for hours every day. If it doesn't work.... well, if it doesn't work, then we're going to be in a world of suckitude. Hardcore. I can't reallyfathom living the way we've been with no end in sight, or having to keep my son on heavy-duty narcotics in order to control the pain caused from havinghis brain & spinal cord compressed by spinal fluid that is under high pressure. Merely contemplating it makes my nose burn & my eyes fill with tears &then I have to tell myself, "Nope, that's not gonna happen," in order to regain my composure. I just hope & pray I'm not lying to myself. This has towork, right? Because, really, the alternative would be unbearable. I know I can do all things through Christ who strengthens me, but I don't want to bestrengthened to walk that road & I definitely don't want my son to have to walk it, either, or any of my other children or my husband (because this issomething that affects all of us). I'm praying that God will stop this roller coaster and tell us that we've ridden long enough & can finally get off. WITHJoshua, who will be happy & headache-free for good.Is that too much to ask for?I guess time will tell. All I know right now is that when it comes to the shunt, we have just two options: it will work or it won't.I'm pulling for WILL.Sign My Guestbook Read TributesTuesday, November 24, 2009 8:32 PM, PSTSix days to go & things are stable as we wait. Joshua's labs on Friday were the same as they'd been the previous Monday (just under 18), but we don't have to fretabout it anymore since Joshua should not need to be on diamox once he has the shunt. I'm very thankful that his bicarbonate level stayed above the cut-off number(barely, but I'll take it! lol) long enough to get us to his surgery date.His surgeries will begin at 7:30am PST on Monday. I'm very happy that he's the first scheduled case of the day because it means things will get started ontime, the neurosurgeon & anesthesiologist will be rested & ready to go, & the nursing staff who will be caring for Joshua until 7pm will be at the start of their shiftsand won't be completely exhausted yet, which is always a plus. I have no idea how long the two procedures are expected to take. Of Joshua's 4 previous corddetetherings, his shortest surgery took 3 hours and the longest took 6. And I read that placing an LP shunt is a 1.5 hour procedure. However, when I asked theneurosurgical PA how long she thought both procedures would take to get done, she gave a short laugh & answered, "You know the answer to that! It will take howeverlong it takes. This is Joshua ~ we'll see what things look like when we get in there." I know she's right; it really does depend on how much scar tissue Dr. W has to getthrough & remove from his cord and the nerve roots. If it's a big ol' mess in there, it'll take her longer to get his back cleaned up again. However, since we've donethis so many times already (Monday's procedures will be #18 & 19), I know a little trick, which is to ask the nurses in pre-op, "How many hours of OR time did Dr. Wreserve for Joshua's surgeries today?" That will give me an idea of when she hopes to be done. :)A dear friend is flying to Portland & taking a cab to the hospital so she can be there to help. I've never had another adult around to help right after a surgery andthis time, both Heather & Charley will be there, as well as Adam, so it's going to be a completely new experience. Charley can only stay until the day after Joshua'ssurgery (then he has to go back home so he can return to his job) & Heather will stay until Saturday, but I think it's going to really lower my stress level to have otherpeople there to help this go-round. I'm thankful that my husband can come to be with his little boy for a few days. Heather came down this past April when Joshuahad been discharged from Portland after his pseudomeningocele repair (the CSF leak that would not heal) and then was readmitted to our local hospital dueto dehydration, but that was a completely different kind of hospitalization from how things typically go after Joshua has major surgery, so I am grateful that I'llhave my friend physically present to go through the ups & downs with me.As always, I will post updates on how Joshua is doing and I thank you for praying for my little boy. The support that comes from the online community means so muchto me.Sign My Guestbook Read TributesWednesday, November 18, 2009 8:13 PM, PSTI called the neurosurgeon's office on Monday to ask if it would be possible to give Joshua something other than versed at pre-op since that med does nothing forrelieving Joshua's anxiety. After so many surgeries & other procedures that he's been sedated for, Joshua knows what is happening as soon as he sees us heading forshort-stay (where we go prior to going downstairs for him to head to the operating room). I was feeling worried about having another horrible hand-off like we did inJuly, so I thought I'd see if some other anti-anxiety medication could be given. The neurosurgeon's P.A. called me to say that yes, absolutely we could give Joshuasomething that will hopefully lower his anxiety, which is a huge relief to me. She said she'll have the anesthesiologist call me to discuss everything and that he'lldecide what my little guy will be given. Probably something like valium or ativan.The P.A. also talked with me about the two procedures that she & the neurosurgeon will be doing. This will be Joshua's 5th cord detethering, so I know what toexpect with that. Dr. W will remove the accumulated scar tissue and regrown lipoma so that Joshua's cord can float freely within his spinal canal (until it getsretethered yet again, because that is the nature of the beast with his constellation of conditions). Because of the problems we've encountered with getting his dura toheal post-operatively, Joshua will be corsetted again ~ wearing the black compression brace that he has worn after the past two back surgeries ~ and he'll keep thaton around-the-clock for 3-4 months. That will hopefully prevent a large CSF leak from developing, which is why the compression brace is used.As for the shunt, the P.A. explained how it is inserted ~ one end of a catheter is placed in the spinal canal and the other end exits the dura & attaches to anadjustable valve, and then another cathether that is also attached to the valve will be tunnelled under the skin around Joshua's side and a tiny cut will be made in hisbelly so the doctor can pull the end of the catheter into his abdomen and tack it down. Excess spinal fluid will drain out of the catheter in his spinal canal and into hisperitoneal cavity, where it will be resorbed by his body.The P.A. told me she and Dr. W aren't worried at all about the surgeries, themselves. It's the aftermath that has them concerned (not in recovery, per se, but longerterm). She told me LP shunts generallyhave more complications than VP shunts (ventriculo-peritoneal ~ shunts that are inside the head) and that they worry that even if the shunt works, Joshua'sconnective tissue problems will cause him to scar over the shunt tubing & obstruct it on a repeated basis. The odds are 50/50 that putting in the shunt is going towork to control the pressure in Joshua's spinal fluid and they predict the odds of complications to be much worse than that, so that wasn't very encouraging to hear(again, since the doctor had told me the same thing). She said that after surgery, Joshua will probably have symptoms of low CSF pressure, which would includeheadache, nausea and/or vomiting, sensitivity to light & a desire to lay flat since that will be what makes his symptoms improve a little. These symptoms can beexpected to occur in some form of severity for up to 4-8 weeks post-operatively, though he could feel better sooner or he might have continuing troublesomesymptoms for longer (there's no way to predict this). I asked her how long I should expect him to be in the hospital and she laughed. Yep, she did! I knew why,actually, and I chuckled right after asking the question. You see, thus far in his life, Joshua has only had 1 "typical" hospitalization where everything went the way itwas expected to; he averages 2 weeks in the hospital after each surgery, so no one expects him to do the expected anymore. However, IF everything went perfectly,he'd have surgery on Monday (the 30th) & we'd come home on Saturday (Dec. 5th). It's a nice goal to pray for, I think.Joshua's lab draw on Monday showed his bicarbonate has dropped to just barely above the level at which the nephrologist said he'd have to be taken off themedication. As such, he'll have another blood draw on Friday to assess how things are progressing. As long as his bicarb doesn't drop to a dangerously-low level, Ihave no plans to take him off the diamox no matter what the nephrologist wants (the neurosurgeon doesn't want me to take him off of it, either, as it is the only thingkeeping Joshua's CSF pressure at a tolerable level). We need his kidneys to 'hang in there' for 11 more days!Sign My Guestbook Read TributesFriday, November 13, 2009 6:03 PM, PSTSurgery will be November 30th. Thankfully, Dr. W wanted it done soon, so Joshua won't have to wait until January. I'm SO relieved!!!We'll celebrate Isaac's birthday a few days early on November 28th (his 6th b'day is December 2nd, but we won't be home) and then Charley, Adam, Joshua & I willhead north on the 29th. Charley will come home the day after Joshua's surgery, leaving Adam to help me like he always does. He (C) wants to come up for thissurgery, which I appreciate. It will be nice to have his support. He won't be able to stay long since he has to work, but I'm glad he'll be there for the day of surgery.I'm off to read up on LP shunts. I know that they have the same risks as VP shunts (a shunt that goes from the brain to the abdomen) ~ infection & occlusion &malfunction ~ but I want to see if there's anything different about an LP shunt that might be useful to know. Besides that, I don't really know the symptoms of shuntproblems yet (never needed to know until now), so I'd best get educated in the next couple of weeks.We're doing labs on Monday to check Joshua's bicarb, but even if it's dropped below 17, we're not taking him off the medication until after his surgery. No way, nohow. He's currently getting 2.0ml three times per day plus one or two 1.0ml 'boluses' when he's having breakthrough head pain. The tylenol with codeine is for hisback pain and is still effective for keeping him comfortable.Sign My Guestbook Read TributesThursday, November 12, 2009 5:25 PM, PSTI'm sitting here in a Howard Johnson Inn partway between Portland and home, extremely tired and thinking about the visitwe had with Dr. W today. The Ronald McDonald House was full because the west house (there are two in Portland ~ one onthe east side of town and one on the west side) is getting renovated, so those families that normally would stay in the westhouse got shunted over to the east house. That's why we're in a motel rather than our usual digs across the street from thehospital.The appointment with the neurosurgeon went as well as could be hoped for. Dr. W will be detethering Joshua's spinal cord(5th time) and placing a lumbar-peritoneal (LP) shunt in his back. The placement of the shunt is not ideal; it should go intoa ventricle in his head. However, Dr. W said Joshua's ventricles are so tiny as a result of the pressure of the cerebrospinalfluid pushing down on his brain that if she tried to put a catheter into one of them, it would make the vents collapse and thatwould be devastating to him.As worrisome as putting a shunt into Joshua is due to his propensity for overproducing scar tissue (and the resultantconcerns about repeated obstructions & need for subsequent surgeries to replace the shunt), Dr. W said we're at the pointwhere this is really our last option. There is about a 50% chance that the shunt will work to alleviate Joshua's pseudotumorcerebri symptoms and the neurosurgeon wasn't feeling overly optimistic that Joshua will fall into the right 50% category. Iasked her what we'd do if it didn't work and she said all we could do then is send Joshua to rehab and let the painmanagement doctor find a combination of medication that would keep Joshua out of pain. She agreed that keeping himpain-free would do nothing for reducing the pressure in his head (if the shunt doesn't work), but again, said that there'dreally be nothing else we could do.Soooooooo... we're hoping the shunt works. We're hoping really, really hard that the shunt works and that Joshua doesn'tscar over it and that it reduces the pressure in his cerebrospinal fluid and that it gets the pressure off his brain and that he'llget some long-term relief.Dr. W said that she talked with the geneticist & they still think Joshua has *something* going on, but the geneticist said hedidn't know what else to test for at this point in time. I heard that and kind of shrugged a little. I mean, really... what's thepoint of saying, "We think your kid has a problem but we can't test for it or tell you what it is." ??? That seems prettypointless to me. Considering all of the testing we've done already (bloodwork, skin biopsy, muscle biopsy, EMG), I'm notgoing to worry about a potential *something*. Sure, it might be the clue that answers the question of why Joshua keepshaving problems and doesn't ever stay "fixed" for a long period of time, but since there's no way to figure it out, I amrefusing to dwell on it and expend mental energy stressing about the possibility.The surgery scheduler was not in the office at the end of our appointment, so I'm supposed to call tomorrow to get the dateset for Joshua. I was told that it'll be after the beginning of the year since Dr. W is completely booked until January, which iskind of the pits since we've had to increase Joshua's dosage of diamox again and he's having breakthrough pain in-betweensome doses, so in addition to being a bit concerned about his bicarb level (which will need to be checked as soon aspossible), I'm nervous about our ability to keep him comfortable until January. Dr. W's P.A. gave us a script for more tylenolwith codeine and said we'll probably have to deal with withdrawals when Joshua is in the hospital since he'll havebeen getting the narcotic for over 3 months by the time he has surgery. I guess that's something else to look forward to(yes, I'm being sarcastic).I'm sure I'll have more to say later, but for now, I think this is enough. For now, I'm going to go cuddle my little boy andwatch some NCIS with Adam & Emily. Today has been a very long day.Sign My Guestbook Read TributesFriday, November 6, 2009 5:05 PM, PSTThe MRIs and urodynamics testing are done. Yippee!The handoff for the MRIs wasn't wonderful, as Joshua was scared and crying, but it wasn't as bad as some of the handoffs we've had in the past where he wasscreaming and terrified, so I guess we'll call this an improvement.The great thing is that the anesthesiologist was one we've had many times before, so he was sympathetic to Joshua's typical pattern of coming out of sedation withvomiting and wailing that his head & back hurt. As such, he gave not only IV zofran, but IV fentanyl and IV propofol. And I gave Joshua a dose of diamox before heawoke, too. The end result was the perfect cocktail for my little guy, because when he woke up, he asked where he was and after I told him, he wanted me to hold him,which I did. After just a few minutes, he asked for something to drink and proceeded to down a couple ounces of water. Then he said, "Can we get out of here?" LOL!I got him dressed, we picked up a copy of the scans (they get burned to CD) and left. We were out of there 15 minutes after he woke up, which has NEVER happened.The anesthesiologist was really happy that the 'cocktail' worked and said he'd write a note in Joshua's chart so that he can get the same stuff the next time he hasMRIs done. I can't really tell ya how happy that made me. I couldn't have asked for a more-perfect recovery from sedation for Joshua.Urodynamics testing wasn't as perfect, but my tough little guy made it through with a minimum of tears and hey, it's over with now and he doesn't have to go throughit again for awhile. After testing, the urologist said that Joshua's inability to poo and my increasing difficulty with cathing him is related to either tethered cord(bladder sphincter being affected) or increased pressure in his brain. He is sending a report over to the neurosurgeon and, as always, we'll have to see what shethinks about the MRIs and other testing results.Tomorrow we are heading out to eastern Washington to visit friends for a few days before we return to Portland to see Dr. Wehby. I'll update again after we seeher.Sign My Guestbook Read TributesWednesday, November 4, 2009 9:24 AM, PSTWe leave tomorrow for Portland ("we" being Adam, Emily, Joshua & myself). MRIs on Friday morning and urodynamics on Friday afternoon. Visit with theneurosurgeon not until the 12th. However, I'll get a copy of the MRIs so I can compare them to the scans done in June and look for any obvious differences and I'llget the radiologist's report on Monday, so I'll know if anything significant is apparent before I take Joshua to see Dr. Wehby.As always, prayer for safe travel would be appreciated, and I'll update after the appointments. Instead of coming home on Saturday, we're heading east to see somefriends and then we'll come back to Portland for Joshua's appointment with the neurosurgeon before heading home again.Joshua is hanging in. The diamox & T3 are controlling his pain. Cathing remains difficult-to-impossible, eating is not happening much at all and... well... nothing muchhas changed since the last update I wrote. I'm relieved that we leave tomorrow and am hopeful that, with the doctors' help, something will be worked out to helpJoshua.Sign My Guestbook Read TributesMonday, October 26, 2009 7:59 PM, PDTThe bicarb level was 19, so that's still okay. The nephrologist said if it dropped to 17, Joshua has to be pulled off the medication, but at 19, we're still okay. ThankGod for that!The lab messed up & forgot to do the CBC and some other test, so we don't know if Joshua's kidney & liver function are still good, but we're going to redo labs in acouple days (have to get new EMLA first) to check.When she called, I asked the pediatrician to clarify what Jenny (the neurosurgeon's P.A.) meant by "feeling pessimisstic". She said that Jenny was honest in sayingthat she does not know what Monica (Dr. Wehby) has up her sleeve, but that they really are not sure what to do about Joshua because his symptoms indicate he needsa shunt, but they feel they just can't safely put one in due to his issues with healing and overproducing scar tissue.Joshua's head is growing & measuring pretty big ~ it's now 53cm! Our pediatrician measured Charley and my heads and we're both 56cm. I forgot to mention that inmy other update.Anyhow, Dr. S said that Jenny said that some kids have gotten some relief from serial lumbar punctures, and she (the pediatrician, Dr. S) asked, "And who is going tobe doing those? I'm NOT!" Jenny said she understood the ped's reaction, and that they didn't want to do that with Joshua's back, either, since his lumbar spine isso messed-up. So the ped asked what else they could do and Jenny said she didn't know, but she is hoping Monica has an idea.She said that, based on Joshua's symptoms, pressure is obviously becoming a huge problem and they'd have to see what his scans show; that maybe possibly there willbe something that shows up to address this problem in a simple manner, but they are pessimisstic about that actually happening.Sooo.... bottom line is that the neurosurgical P.A. is at a loss but is hoping the neurosurgeon has some idea; however, they think they may need to transfer Joshua to abigger facility.Portland is the biggest medical facility in Oregon, but Stanford & UCSF are a lot bigger. There's also doctors in Chicago & New York who may be helpful and I don'tknow if they will be contacted via phone or if we'll end up taking Joshua to see them in person. I guess it all depends on what the MRIs show and what ourneurosurgeon (who is fantastic) has to say.The pediatrician said that she and the neurosurgical P.A. want me to do whatever is necessary to keep Joshua as comfortable as possible until he can be seen up north,so we're increasing his diamox dose at night and I've got permission to give him tylenol with codeine around the clock at regular intervals.Tonight I am feeling sad & worried for Joshua & apprehensive about potentially having to go to new doctors (breaking in new doctors is not an easy thing to do whenyou've got a kid who doesn't do anything by the book), but I am absolutely & thoroughly grateful for my children's pediatrician, the neurosurgical P.A. because theylove Joshua and are trying everything they can think of to help him.Sign My Guestbook Read TributesMonday, October 26, 2009 6:21 PM, PDTJoshua had an impromptu visit to the pediatrician this afternoon after speech therapy. He moaned "ow... ow... ow..." throughout the entire appointment, his headresting on my shoulder. It was pretty pathetic-sounding.The ped called the neurosurgeon's P.A. to tell her what is going on and was told that the docs in Portland "feel pessimisstic". I'm not entirely sure what that means,but it didn't sound good. The ped said that it may be time to start thinking of taking Joshua to a big medical center like Stanford or UCSF (Univ. of California, SanFrancisco). There is no way that Joshua is the only child in the United States who has intracranial hypertension + spina bifida + chiari + connective tissue problemsthat make getting a shunt out of the question, so what we should start looking for is someone who knows how to treat these kids. Because really, there HAS to besomeone out there who knows how to treat this, right???? Right? Okay, I HOPE there's someone and that God will lead us to him/her. And in the meantime, I hopethat our neurosurgeon will be able to help get Joshua out of pain again to provide him with another chunk of stable time.Charley and I agreed with the pediatrician on everything she said, and she said she wish she knew what to suggest to us for how to help our little boy. I told her it wasall right... and at least he'd had a pretty long good period this go-round. She looked at me and said, "Ten weeks is not a long time." I guess she's right. It's kind ofsad that 2.5 months seemed like a long time, though.She sent us over to the hospital infusion clinic to get labs drawn, and for the second time in a row, the EMLA (numbing cream) did not work, so Joshua had anothertraumatic blood draw through his port. The nurse & I couldn't figure out why he's not getting numb, but the nurse suggested I get a new script for EMLA in casewhat I'm using is too old to be effective.As we were leaving, another nurse was following us and listening to Joshua cry the whole way from the infusion clinic to the parking lot. She approached me andhanded me a small paper bag that contained two cupcakes, telling me to please take these for my little boy and she hoped he would start feeling better soon. That wassuch a sweet gesture, I thought.I am currently waiting for the results of the lab draw. Instead of checking just Joshua's bicarb level, Dr. S ordered a full metabolic panel to make sure his kidneys,liver, blood counts & the like are all okay. She said she'd call after hours to give me the results.We're going to give Joshua pedialyte for 24 hours to rehydrate him. He'll get 50ml/hr (that's 1.67 ounces per hour) and then we'll switch back to giving him hisregular formula again. We can't run his formula on a continuous feed because he doesn't tolerate it for more than a few hours before he starts throwing up, whichpretty much defeats the purpose of the continuous feed.I'll post another quick update if the results of the bloodwork show anything concerning. If I don't post anything new tonight, it means that nothing worrisome showedup (that'd be good!).Sign My Guestbook Read TributesSunday, October 25, 2009 10:03 PM, PDTHere's where things stand as of tonight:The increased dose of diamox has helped Joshua to be more comfortable during the day and when he has tylenol w/codeine on-board along with the diamox, he haspretty normal playtimes, too. Well, as normal as you can get considering we have to drug him up to get him feeling okay enough to play.So... we're able to keep his pain mostly under control, but Joshua continues to become more symptomatic as the days roll by. Cathing him is increasingly difficult;sometimes I can't get the catheter in at all because his bladder sphincter is locked shut. Why is this happening? All I can hypothesize is that the nerves supplyinghis bladder are being messed with due to his tethered cord & that is causing the issues with cathing. It's not like it's ever been a problem before & I've been cathingJoshua for over 2 years now. When he has urodynamics done on November 6th, I'm hoping the urologist has some definitive answers for me & that it's a simple fix(like maybe detethering J's back will reverse this new issue with his bladder).He has multiple bouts of shaking his head rapidly back and forth each day. I am surmising that this could be the result of the increased pressure in his head ~ I'veread that increased cranial pressure can make a person hear the blood swooshing through their blood vessels & it's quite annoying. Joshua will tell me his head doesn'thurt when he's shaking it, but he acts as though he's trying to dislodge something from his ear, so it makes me wonder if he's hearing things. Either way, I have noidea how to solve that problem.His eating is almost nonexistent. I had to cajole him to take 3 bites of spaghetti tonight. He did and then said he was full. Yesterday, he ate 1/2 of a Chips Ahoycookie and then handed the other half to me because he was full (he had not eaten any other solid food all day). Tube feeds continue to be a hit-or-miss affair. Hecan't take more than 4 ounces (still), but more concerning to me is the fact that Joshua starts complaining of fullness after the first ounce is in. What I suspect isoccurring is that a full stomach puts pressure against his back and that causes him pain, so he has associated eating with pain & therefore resists eating or beingtubefed. My hope is that because he isn't engaging in a lot of activity, he isn't losing much weight. I sent an email to our ped, asking her if I should start givingJoshua pedialyte on a continuous feed at a rate of 1-2 ounces per hour to prevent dehydration. I know based on how little urine he's producing that he is not gettingenough fluids each day, & in the past, the ped has had me give a super-slow continuous feed of pedialyte via g-tube in order to keep Joshua out of the hospital, so thequestion rolling around in my head is whether we're to that point again or not.His stamina is pathetic these days. He has short bursts of energy and can look as though he's doing pretty well during those times, but then he fizzes out & spendsthe rest of the day wanting to be held. He can push himself in his wheelchair for only very short distances (like half the length of one store aisle) before needingassistance. In short, his activity level is nothing resembling a typical 3.5 year old's. I want to see him back to his happy self, boisterously playing with his brothers &sisters and being happy & loud.Actually, what I really want is for November 6th & 12th to get here soon so that we can get some answers (hopefully) & get the ball rolling toward ending this decline& getting Joshua moving back up the hill to stability again.Sign My Guestbook Read TributesFriday, October 16, 2009 7:08 PM, PDTThe status quo has changed.Joshua is now in pain more than 50% of each day. He wakes repeatedly at night, kicking & writhing around. He complains during the day of head & back pain. Hecoughs, gags & vomits. Diamox has been increased and he's getting tylenol with codeine, but neither are giving him relief for very long. He's wanting to be held invarying positions for most of every day.Unfortunately, this is really lousy timing because the MRI clinic can't get Joshua in until the end of next week and the neurosurgeon will be gone for 2 weeks afterthat, so we have to wait until November 6th to do MRIs and November 12th to see the nsg (so much for her wanting to see him ASAP).He's not eating much, so we're trying to tube him more, but he retches after 4 ounces, so the bottom line is that we're getting what we can into him, but it probablyisn't enough.Like I said, we increased his dose of diamox today in the hopes it will provide some measure of relief from the increased pressure in his head & back, but thus farthere hasn't been any noticeable difference. Maybe we'll see some improvement over the next few days.I know this behavior is so very typical for Joshua ~ to show just a few signs of there being a problem before suddenly sliding downhill quickly ~ but I don't know if I'llever truly get used to it happening. Even though I know it's coming, it still surprises me every time and I forget how bad things can get until I'm facing it yet again. Ithink that when Joshua has an extended period of stability like he has for the past few months, it's even more shocking to everyone in the family when he suddenly isnot doing well anymore.Prayers for Joshua's comfort, a reduction in his pain & for our strength ("our" being the rest of the family) while we wait for Dr. Wehby to detether him again wouldbe appreciated. Even though we know where this is heading, that doesn't make waiting for the inevitable any easier.Sign My Guestbook Read TributesMonday, October 12, 2009 9:24 PM, PDTToday was a busy day. I've been having trouble at times getting the catheter to go into Joshua's bladder, which is a completely new occurrence after more than twoyears of cathing him, and I noticed this morning that his urine was pretty cloudy, so I put in a call to the ped & (as expected) was told to bring him in so they couldcheck for a bladder or urinary tract infection. The urinanalysis showed no bacteria, but there was a decent amount of protein. Why? No idea. I asked the ped if itcould be from the Diamox and she said it shouldn't be. She didn't seem to be concerned, so I'm not worrying about it, either.Joshua has lost a small amount of weight for the second time in a row (past two appointments), which isn't overly concerning, but indicates he's not ingesting as manycalories as he expends, so we'll start giving him an extra tubefeed each night to offset that & attempt to get his weight trending in the right direction again.I chatted with the neurosurgeon's assistant today and was told they'd like to get Joshua seen before his already-scheduled appointment of November 12th, so orderswere being faxed to the MRI clinic to get the brain & lumbar spine scans done ASAP rather than in a month. Once we have a new date for the MRIs, an appointmentwill be made for Joshua to see the neurosurgeon. There's no guarantee we'll get in on the same day as the MRIs, but I am praying that the office can get Joshua anappointment within 1-2 days of the MRIs since I'd really like to do it all in one trip to Portland rather than two.He's doing all right at this time. Diamox and tylenol with codeine are keeping him pretty happy, but if we're late with a dose, he very quickly gets a headache that hashim crying & miserable. He's still not able to poo on his own & I wonder if detethering him will allow that function to return or if this new nerve damage to his bowelwill be permanent. His gait has changed enough that I had to take him to the orthotist today to get his AFOs adjusted because he's developed a pressure sore on theoutside of his right ankle and redness (that could become a pressure sore) along the outside edge of his left foot. The orthotist said Joshua now appears to bewalking in a way that puts added pressure against the outside edges of his feet, which is a new development for him that could be caused by tethered cord.That's about it for now. Kind of 'status quo,' but with a few detail changes. I don't wonder whether or not Joshua needs to be detethered again, but I do wonder ifthe neurosurgeon will want to do it soon or if she'll think it's okay to wait a few more months. She's gone both ways in the past ~ getting Joshua into surgery rightaway and holding off until things were *really* bad versus *getting bad* ~ so I really have no idea which way she'll go this time. Hopefully we'll be able to get Joshuain to see her in the next week or two and then we'll have some answers as far as where we'll go from here.Sign My Guestbook Read TributesWednesday, September 30, 2009 4:50 PM, PDTI bit the bullet & called the neurosurgeon yesterday, leaving a voicemail apprising her of the situation & asking what the game plan is going to be this go-round.She called back to say that she wants Joshua to have MRIs (brain & spine) & to see her in-office. If his symptoms continue to get worse between now & then, we'llschedule his next detethering.Dr. Wehby said she doesn't want to touch Joshua when he's unstable, but she recognized that it's been almost a year since he was last untethered & being that this isJoshua (with his unusual connective tissue & other unique features), a year between back surgeries is pretty 'average' for him. He seems to produce significantamounts of scar tissue in that time & he grows enough to stretch things to where he starts having problems.I know he must feel pretty lousy because I asked him if he wanted to go see Dr. Wehby so she could fix his back & he nodded and answered, "Yes."He's looking pale again, is sleeping more & is wanting to be held in an upright position (like you'd hold a tiny baby with their head resting on your shoulder) moreoften during the day.Sigh.He'll be okay, I know. This is a familiar road we're traveling, so I feel like I kind of know what to expect (no God, that is not a challenge to throw something new &unexpected into the mix). I'm just feeling sad because we have all been really enjoying 'happy Joshua' and I thought we'd have a longer "good" time before thingsstarted up with him again.Sign My Guestbook Read TributesMonday, September 28, 2009 6:25 PM, PDTThere are some new things going on with Joshua, but nothing that is going to require taking action right away, so I kind of feel like it's not worth mentioning.However, I know that if I don't, then later I'll feel like I should have said something when "it" all began happening so that anyone reading this doesn't think "it" cameout of nowhere.Clear as mud? Good!I'm pretty sure that Joshua's cord is significantly tethered again. He's been waking up in pain for the past 5 (or is it 6?) nights. After the second night, Iprophylactically gave him tylenol before I went to bed to help him sleep through. It wasn't enough, so now he's getting tylenol with codeine at nighttime. That'sworking to control his pain.There are other things, as well. He's showing weakness in his left leg, he's got increased constipation, he doesn't want to sit for very long, his swayback (lordosis) isgetting much more-pronounced, his energy for walking is deteriorating, and he's not as interested in eating so he's needing a couple tube feeds each day again.I don't know for sure whether Joshua's symptoms are a result of tethered cord or are a sign of increasing pressure in his CSF due to Diamox losing its effectiveness.Yesterday & today, I have given him a tiny bit more Diamox than before (0.1ml increase per dose) to try and differentiate between the two potential culprits. I halfthinkthat this is a combination of the two, though... that the Diamox isn't as effective as before (which could be why his bicarb level increased a bit) and thathe's tethered. I mean, I know he's tethered because the results of the muscle biopsy showed/confirmed that. I think we're now on the road of him showingsymptoms of that tethering, which means we'll eventually wind up back in the operating room in Portland getting things cleaned out again. The only question in my mind,really, is how long it'll be before that happens.At this time, Joshua is still mostly happy during the day. He's making good progress in speech therapy (he goes twice each week) and he's showing that he has a vividimagination when playing with legos & playmobil people. The changes in him at this time are not glaringly obvious & if it weren't for the fact that we've walked thispath so often already, I probably wouldn't think much of the symptoms he's displaying. Other than the head & back pain during the night & increasing muscle fatigueduring the day, he's not significantly affected by whatever is going on in his back (at this time); however, that status has been known to change rapidly in the past,so I'm not making any assumptions where Mr. J is concerned.Sign My Guestbook Read TributesSaturday, September 19, 2009 8:51 AM, PDTThe neurologist & neurosurgeon were both very happy to see Joshua doing so well. He played & chatted & even demonstrated his 'run' for Dr. Wehby, which hadher smiling the biggest I've ever seen.Neither doctor (nor the nephrologist who was called to consult) has any idea about a long-term plan for what we'll do once Diamox no longer works. The generalconsensus was to "ride this wave" as long as we can & wing it as we go along.I'm not worried about the future at this point because I know that God knows what the plan is going to be, so I'm trusting that He'll lead us (myself & the doctors) inthe right direction when the time comes for new things to be done. In the meantime, Joshua IS doing really well and I'm enjoying this time immensely. It's a relief tobe in this place where I can relax, not have to be hyper-vigilant, and do more normal-type things with my youngest. It's a good change from the past 2.5 years. :)Sign My Guestbook Read TributesWednesday, September 16, 2009 11:59 PM, PDTHeading back up to Portland in the morning for another overnight trip. Joshua will see his neurologist and I will (hopefully) be able to connect with the neurosurgeonfor a discussion about long-term plans for treatment of the (assumed-to-have) PTC.I would again covet prayers for safe travel and for my sore throat to not bloom into a full-blown illness. 6 of the 7 kids have been sick for the past 30 hours (thoughAdam & Emily were feeling better by the time they went to bed; Joshua was the one child who didn't get sick), but I really can't afford to get sick when I've got todrive and function in discussions with Joshua's specialists.This trip isn't going to be a big deal; just an examination of Joshua to assure the neurologist that he is tolerating the Diamox all right and talking to the neurologist &neurosurgeon to ensure everyone's on the same page. Still, if you want to pray that everything goes smoothly, I would appreciate that.I'll update after we get home on Friday night.P.S. Joshua had an evaluation for speech therapy today and will be seeing an SLP twice a week to work on his articulation & other delays in the realm of language.While it's disappointing that he's delayed enough to need speech therapy, the SLP said that in light of all he's been through, especially 3 brain surgeries in 10.5months' time, he's actually doing really well. So I guess when you look at it from that perspective, the situation doesn't seem so bad. And the therapy will help him tobe understood a lot better, which will be beneficial for my little guy. Besides, with two of his older brothers in speech & occupational therapy, as well, what's a couplemore sessions for a third kiddo each week, right? I think maybe I should just set up a cot in the corner of the therapy building since I spend so much time there! :)Sign My Guestbook Read TributesSunday, September 13, 2009 11:13 PM, PDTWhen I was registering Joshua at the hospital for the EMG/NCS (electromyelograph/nerve conduction study), I noticed thepaper said, "EMG/NCS with Versed". That made me nervous because I'd been told Joshua would be sedated, which hasalways meant "knocked unconscious" in the past, and I knew that Versed doesn't work on Joshua at all anymore, but Iresolved to stay calm & see what the nurse/doctor had to say.When the nurse came to get us, I asked her if the plan was to use Versed to sedate Joshua for the procedure. She repliedyes, then began to explain what Versed is & how it works. I interrupted her to ask, "Do you know that Versed is noteffective on Joshua anymore?" She didn't. She asked why. I told her, "Probably because he's had 16 surgeries, a dozen orso MRIs & lots of CTs and he's been sedated for all of 'em. Eventually it just doesn't work anymore, I guess." She was reallynice and discussed with me some potential options, including rescheduling the test with full sedation (ie: knocking him out),using different medication to chill Joshua enough to do the test, or trying Versed to see if maybe a huge dose would work. Ishot down the last option since I've seen the anesthesiologist give Joshua 3 full doses within 30 minutes & get zero effect asrecently as July 7th, so I didn't see any reason to waste time trying to make Versed work and I refused to hold him downthroughout this test (they stick electrode needles into the muscles and send an electric current through them to measurehow the nerves are functioning) and traumatize him. I wanted him unconscious or totally gorked out on something. Period.I expressed my wishes (politely) and the nurse said she'd call Dr. J to see what he wanted to do.About 5 minutes went by and then in walked Dr. J. He hadn't made up his mind what to do about the sedation, but hewanted to discuss Joshua's symptoms & whatnot, instead. During our discussion, I asked him if he was going totest Joshua's arms and legs and he told me he just wanted to do the legs. I told him that I didn't think that was going to beuseful and he wanted to know why I thought that (asked as he was almost rolling his eyes at me), so I said that since Joshuahas spina bifida, his legs were obviously going to have abnormal nerve conduction and the test results would not tell uswhether the abnormal nerve function was due to spina bifida or something else.... which was the same problem we had withthe muscle biopsy, since the surgeon took the sample from his thigh rather than his deltoid (muscle in the backside of theupper arm). The physiatrist looked at Joshua, who was sitting in his wheelchair playing a video game with Adam, and askedin a loud, VERY shocked voice, "He has SPINA BIFIDA?!?!?"Yes, folks, this doctor who was minutes away from doing an invasive test on my 3.5 year old didn't even know he had spinabifida!!! The man had not looked at one page in Joshua's 6-inch thick chart. I did not manage to hide my disdain asI answered Dr. J's question with the response, "You don't know his primary diagnosis?" Be proud of me, though, because Ididn't add, "You moron!" to the end of that question.Seriously, is it expecting too much to think a doctor would look at the FIRST PAGE of a kid's chart to learn a little somethingabout him ~ you know, like WHY he's coming to have an EMG done ~ before he walks in the room to treat him? Sheesh. Iwas incredulous. He tried to blame the geneticist for not telling him that Joshua had spina bifida, at which point I bluntlyreminded him that Joshua has both a large paper chart and an e-chart accessible by any computer in the hospital and thatevery report by every specialist he's seen clearly states at the top of the report that he has SB, so he (Dr. J) could havemade himself aware of my son's primary diagnosis prior to walking in the room. He was busted & he knew it. I was lessthan impressed that he didn't own up to it, but instead tried to blame someone else.There was a lot of intense discussion for about 20 minutes before Dr. J finally agreed to knock Joshua out for most of the testand then have the anesthesiologist half-wake him for the last part of the test where they needed to have him contractmuscles, AND he agreed to test Joshua's arms since testing his legs would give confusing results. I was allowed to holdJoshua on my lap while he was gassed to sleep and then Adam & I left the room (we weren't allowed to be in there;otherwise we wouldn't have left).The test was normal, which means that Joshua does not have a degenerative condition, he doesn't have spinal muscularatrophy, and his problems are probably all related to his spina bifida, connective tissue abnormality & pseudotumor cerebri.So that's good, of course, but also concerning since the neurosurgeon won't put in a shunt (he'd scar over it and need a newone put in over & over & over, which would lead to brain damage from scar tissue being deposited in his brain and then itcould eventually kill him, per the neurosurgeon's explanation for why she doesn't want to put in a shunt). Yet a shunt is theproper treatment for PTC (pseudotumor cerebri). We'll use the Diamox, which works, but he can't be on Diamox forever becauseit loses effectiveness, which necessitates a higher dose, but higher doses wreck the bicarb level (ie: kidneys), sothen he won't be able to take it anymore. I ran into Jenny, the neurosurgeon's P.A., and she said she'd chat with Dr. Wehbyabout coming up with a long-term plan for what we can try when Diamox isn't working anymore. When I take Joshua toPortland this upcoming Thursday to see his neurologist, I'll pop over to Dr. Wehby's office (she's next door to Dr. Huffman,so it's convenient) and see if she's come up with anything yet (or remind her to start thinking about it).Dr. Wehby hasn't wanted to concede that Joshua actually has PTC, but in light of all the testing he's had done & the fact thateverything has been normal, there isn't really anything else that explains Joshua's symptoms OTHER than PseudotumorCerebri plus Tethered Cord as a result of Spina Bifida. Sooooo... I'm praying that the neurosurgeon will come around and bemoved to WANT to investigate the connection between Chiari & PTC so that she can prove to herself that yeah, it's possible,and yeah, Joshua has every symptom in the book, and yeah, this is something that she is gonna have to helpmanage because it doesn't fall under anyone else's "jurisdiction," so she can't farm Joshua out to some other doctor (asmuch as she may wish she could). :)Oh! Another thing! It turns out that even the abnormal muscle biopsy results were actually "normal" for Joshua since severechronic denervation atrophy (what the muscle biopsy showed & what led the geneticist to mention Spinal MuscularAtrophy) is something that is seen in muscles affected by spina bifida as well as conditions like SMA. But no one fromaround here bothered to tell me that! My Australian friend had her neurologist friend look at Joshua's muscle biopsy resultsand it was that doctor who said the denervation atrophy wasn't anything to worry about since Joshua had Spina Bifida. If itweren't for those two Australian women, I would have continued to wonder if Joshua had SMA, and I would not have thoughtto ask the physiatrist to test Joshua's arms rather than his legs, which then would have led to a false diagnosis once the EMGshowed abnormal nerve conduction results. So I am thankful that God provided the intelligence of my Australian friend &HER friend to guide me in the right direction so that we (Charley, myself & the doctors) could get an accurate picture ofhow Joshua's nerves are working & save us from going down the wrong road.Sign My Guestbook Read TributesFriday, September 11, 2009 6:08 PM, PDTWe're home! I'll write more later, but the nutshell version of things is this: EMG/NCS results were normal (that doesn't 100% rule out a problem, thephysiatrist told me, but he also said he thinks my idea of SB + PTC = "a home run" as far as diagnosis), I was able to talk to the neurosurgeon's P.A.about coming up with a long-term plan for what we'll do once diamox isn't working anymore (it loses effectiveness in time) since no one wants to put ashunt in Joshua, he (J) is sore but in a decent mood now that we're home, & I'm exhausted.Will write more in-depth later, if not for your interest, for my own recollection in the future. :)Thanks for the prayers ~ I think they definitely helped!Sign My Guestbook Read TributesWednesday, September 9, 2009 5:27 PM, PDTBusy, busy day today. Joshua continues to do well, though he did wake up last night with a screaming headache that made him retch repeatedly, so I had to give himzofran & tylenol to calm him down and get him back to sleep.He had another blood draw today and is holding steady at 19 mmol/L, which I am thankful for. When I went to the pharmacy to pick up the refill of his diamox, thepharmacist asked me if the docs planned on keeping Joshua on this long-term. I told him I thought that was the plan, yes.... why? He informed me that diamox losesits effectiveness over time, which then necessitates an increase in dose, but that typically causes problems with the bicarb level, so the person has to go off of it. Iadmit, I was a bit sobered by that revelation, but I shrugged it off and decided I am not going to worry about it. Only God knows Joshua's future; I can only go bythe here & now, and right now, he is doing great, so we're going to ride this wave for as long as we can without stressing about what might happen sometime later.Tomorrow Joshua & I leave for Portland. Joshua has the EMG test on Friday morning and then we'll drive home that afternoon/evening. He'll be fully sedated & it ismy intention to forthrightly (yet politely) insist that the physiatrist test Joshua's arm muscles along with his legs because testing just his legs won't tell us anythingthat we don't already know. The child has spina bifida; he's GOING to have abnormal nerve conduction in his leg muscles! They need to test his arm muscles so thatwe get accurate results. If the physiatrist refuses to do Joshua's arms, I will refuse to do the test because it's stupid to subject a 3.5 year old to an EMG if theresults aren't going to be reliable... and if all they test is Joshua's legs, the results will absolutely NOT be reliable.Soooooooo..... wish us luck and pray for safe travel and for an understanding physiatrist (I've never met the guy & he doesn't know that I am neither a hystericalmother nor an idiot. Here's hoping he'll listen to me). I'll post an update as soon as I can (which would be Friday night at the latest).Sign My Guestbook Read TributesWednesday, September 2, 2009 4:25 PM, PDTToday's bicarb level was 19 mmol/L, same as Monday. So... yea that it hasn't gotten lower, but bummer that it didn't go up. Still, I'm taking it as good news.We're going to keep Joshua at 2 doses per day, watch his eating/urine output (both have been decreasing) & his fatigue (has been increasing), and he'll have anotherblood draw on Friday (thank God for the port, which makes this procedure painless).Overall, he's still pretty happy, having no pain & seems to be tolerating things all right. I'm hopeful his kidneys will get on-board with the plan to stay on Diamoxbecause living with Happy Joshua is pretty nice & I'd like it to continue indefinitely!Sign My Guestbook Read TributesWednesday, September 2, 2009 10:15 AM, PDTJoshua will have blood drawn at 2:15 this afternoon.Dr. S (pediatrician) has been conferring with a nephrologist (kidney doc) to ascertain if there is anything we can give Joshua orally (or via g-tube) to boost hisbicarbonate level so we can keep him on the diamox.Please pray that his bicarb level today is good. That it hasn't gotten any lower and, in fact, actually has gone up to normal level again.He hasn't been eating more than a couple of bites yesterday and today, so he's getting tubed, instead. And this morning, when I tried to give him 6 ounces, only 5would go in. That's happened before, but I don't know why it occurs. For some reason, his stomach seems to say, "Nope, no more; I'm full." Kind of weird, but nothingnew.I'll update when I get home this afternoon. I'm heading out in a few minutes to take Megan by the vet's (she's going to be volunteering there), David to theorthodontist, Isaac to speech therapy & then Joshua to the infusion clinic for his blood draw. I won't be home until close to 4pm (PST), but wanted to ask people topray.Thanks.Sign My Guestbook Read TributesMonday, August 31, 2009 10:37 PM, PDTBlood draw today showed Joshua's bicarbonate level was at 19 mmol/L. Normal is 22-31 mmol/L. Before beginning the Diamox again, his level wasnormal, so the drop is disappointing because it means his body isn't tolerating the tiny dose he's on like we hoped it would. I don't know how it's evenpossible that his bicarb is dropping when he's getting only one-fifth of the dose he had the first go-round, but then again, I didn't think we would get anychange from him being on such a small dose, either, and we did.The first 3 days on the medication were great. Joshua had no headache, no gagging, no vomiting, no need for a tubefeed because he was eating, nocomplaints of his hands feeling weird, he wasn't as off-balance as usual and he did not have a hoarse voice. In other words, all of his chiari-like symptoms(which some of his medical team & Charley & I suspect are actually pseudotumor cerebri symptoms) were gone. He was happy, playing with his siblings &by himself without the need of frequent breaks and he was talking more clearly. He was still waking at night a few times with some discomfort, but hesettled down quickly and did not need pain medication. It was pretty exciting to everyone here & we decided Diamox really was Joshua's "miracle drug".Today, Joshua was still happy, but he wasn't interested in eating or drinking very much (got tubefed for breakfast & dinner, plus 2 six-ounce boluses ofwater through his g-tube) and his urine output was significantly reduced. I didn't really think much of it at first, but both things can be symptomatic ofacidosis, which can be caused by low bicarbonate. The pediatrician said to call her on Wednesday morning with a report of how Joshie is doing. Ifanything has changed (behavior, urine output, etc), she'll want to do a blood draw on Wednesday. If things are still okay, then we'll do the next blooddraw on Friday. In the meantime, we're dropping one dose of the medication per day, so he'll be getting 2 doses instead of 3.I really can't express how much I want him to be able to stay on this medication. The change in him is significant (for the better) when he's on it.Everyone who sees Joshua when he's on the Diamox comments on how much BETTER he is, how much happier... and he really is. I want his body totolerate this medication. I feel disappointed that it doesn't appear to be happening.If his next blood draw isn't good, I'm going to lobby to decrease his dose rather than take him off the medication completely. I'd rather get *some*benefit than none. And I know I've said this before, but I really do wish Joshua would take the "easy route" once in awhile.Sign My Guestbook Read TributesWednesday, August 26, 2009 10:32 AM, PDTI emailed Joshua's pediatrician about his symptoms and she agreed that we should put him back on Diamox. The last time he was on the medication(which caused his bicarb level to get way too low), he was getting 125mg, 3 times per day. In an attempt to alleviate Joshua's symptoms withoutnegatively affecting his bicarb level, we are going to be starting with a tiny dose & titrating it up until we (hopefully) find that magic number where thesymptoms are gone and his electrolytes remain stable.He'll get 25mg, 3 times per day, beginning Friday (the lab has to compound it & I will pick it up tomorrow) and then have a lab draw through his port todo a basic metabolic panel on Monday. Then we'll go to 50mg, 3 times a day, on Tuesday - Friday, and do another lab draw Friday. If everything looksgood, we'll bump him up to 75mg, 3 times per day, on Saturday. The plan is to give a specific dose for 4 days & draw labs every 4 days to checkelectrolyte function. If all looks good, we'll increase the Diamox by 25mg every 5th day until we reach the dose where Joshua is not having pseudotumorcerebri symptoms anymore and his body is able to handle the medication without his bicarb level dropping.That's the plan, anyhow. We'll see how it works out in reality.Sign My Guestbook Read TributesFriday, August 21, 2009 5:17 PM, PDTI'm feeling down today. Joshua has been waking more at night with head pain and having more bouts of pain during the day. He's choking on food/drink more often.This morning, he was asking for something and Charley asked, "Is his voice getting hoarse again?" It was something I had thought maybe I was just hearing, so Ihadn't said anything to anyone about it. His gait is different again ~ his right leg seems bowed outward at the knee and he 'high steps' with his left leg when he'sdoing his version of running. He leaks all the time in between caths now even though we're on an every-3 hour schedule versus the old every-4 hours.He's not miserable. He's still tolerating tubefeeds. Not all is bad. I realize that.I think I'm just tired of everything today.Sign My Guestbook Read TributesTuesday, August 18, 2009 4:38 PM, PDTQuick update: Dr. Anadiotis (geneticist) called this morning to let me know that he'd discussed things with Dr. Janselewitz (physiatrist) and they'd agreed doing theEMG when we come up would be the best course of action to take. They also agreed that sedating Joshua for it would be appropriate given his age & medical history,so while he'll have sore muscles after the test, he won't have to go through the pain & fear of being awake during the test (thank God).Joshua's appointment is for September 11th at 10:30am. They couldn't do it on the 8th because the sedation team wasn't available. I don't mind waiting 3 more days,though, in order to get the EMG done on the same day the physiatrist meets Joshua to do the evaluation (which, from my understanding, he'll do after the EMG is overwith & Joshua recovers from being sedated).Sign My Guestbook Read TributesMonday, August 17, 2009 10:00 PM, PDTThe geneticist called with more results from Joshua's muscle biopsy. He said there was "severe chronic denervation atrophy".What does that mean? Breaking down the words, it would imply continual, very bad muscle wasting due to the lack of nerves providing signals from thebrain. But what, exactly, does it mean for Joshua? I don't know yet.The geneticist said Joshua needs to have an EMG (electromyelogram) done. Previously, he had said he wanted Joshua to see the physiatrist to determineif that doctor thought an EMG would be of any use, so this is a change. He will be talking with the physiatrist tomorrow morning to discuss whether Dr.Janselewitz feels doing nerve conduction testing (which could be done at the same time as the EMG) is something to do, as well, and he wants to talk toDr. J to determine if he'll agree to do the testing the same day we go up there (September 8th ~ the appointment we'd had for August 24th got bumped)rather than making us do the "initial meet-and-evaluation" appointment and then make the appointment for the EMG. I hope the physiatrist agrees to dothat... it'd save us a trip to Portland and would get us answers faster.I asked Dr. Anadiotis what can cause severe chronic denervation atrophy & I asked if it's possible it's just a sign of the spina bifida (since that also causesloss of innervation to the legs & subsequent atrophy) and he said he doesn't believe so because what Joshua has is progressive and is affecting his arms& upper body as well as his lower body, which is something spina bifida would not do. He said what he mostly wonders about as a possible diagnosis isSMA ~ Spinal Muscular Atrophy (which, from what I've read, can range from fatal to mild, though the younger a person presents with symptoms, theworse the prognosis seems to be).He said that the full report has not yet come back from the lab... that there is an immunohistochemistry study & a light microscopy panel that will beforthcoming, but that he'd gotten "this blurb" sent to him today (the severe chronic denervation atrophy) and he called because he had promisedto contact me with any information he heard when he heard it. He said he'll call the neuropathologist tomorrow to ask if there's a full in-depth report thatcan be sent showing the different levels of proteins in the muscles and other stuff like that, and he'll fax me a copy of whatever he gets.He said that he sees this report as a ray of sunlight breaking through the clouds because FINALLY there is an abnormal test result, which will help ustoward getting a diagnosis. He thinks the EMG will give results that will point toward a diagnostic test that will ultimately tell us conclusively what's upwith Joshua and that we're "closing in" on an answer. That's a huge change in his attitude from the last time we talked at the end of July, when he wastelling me the odds of our getting a diagnosis for Joshua were pretty low.So... this is potentially bad news, but it is sort of good news if only because it proves something IS happening and that there's progressive loss of nervefunction which is, in turn, causing muscle fibers to die (which results in weakness). Maybe knowing this will enable the geneticist & physiatrist to worktogether (they're in the same office) to be able to figure out why this is happening. Even though they won't be able to fix it, it would be helpful to knowthe reason behind all of this.I am refusing to get worked up at all about this right now. IF Joshua ends up getting a diagnosis of SMA or some other specific disorder, then I will letmyself be sad and feel all the things that I imagine getting such a diagnosis would entail. However, until I know for sure, I'm not going to freak out orstress about it. There's really no point in it, and when I look at Joshua, I realize that regardless of what is happening inside his body, he doesn't thinkthere's a problem & he's okay with how life is for him, so I need to take my cue from my little boy & be okay, too. And I am (okay, that is). I'm enjoyingthe stable place that he's in right now and the fact that, for the most part, he's happy these days.Sign My Guestbook Read TributesWednesday, August 12, 2009 11:00 PM, PDTJoshua was outside with his 10-and-under sibs and he tripped over a rope and fell headfirst into the corner of a pebbly cement brick, splitting his foreheadopen in a lovely jagged mess. I know head wounds bleed a lot, but honestly, I've never seen something bleed like THIS. I also knew there was no way Iwas going to make it to the trusted hospital 40 miles away, so I took him to the local ER, instead.When the doc went to numb up the cut to do stitches, there was a tiny geyser of blood shooting up with every heartbeat. He looked a bit surprised andsaid, "Okay, he severed an artery. It's a small one, but that's what's causing this bleeding." It was kinda one of the grossest things I've seen, which issaying a lot considering what I've seen thus far in life. I think the fact that it was blood pulsating out of my 3 year old's head like a little fountain mighthave had something to do with my reaction.Adam asked how deep it was and the ER doc said the puncture part of the cut went all the way to Joshua's skull.7 stitches later and a honkin' bandaid and co-ban wrapped around his head to make him keep it on & to provide compression, and we were out the door.Doc said to watch for signs of concussion, brain bleed (highly unlikely) and to not be surprised if Joshua winds up with black eyes from this becausesevered arteries tend to ooze even with the stitches and the blood often pools under the eyes when the laceration is on the forehead.So now we're home, I'm tired, Joshua seems to be fine (he's in my lap drinking some milk and getting ready to fall asleep) and I wanted to share my 'fun'adventure. This kiddo keeps everyone on their toes, that's for sure!Sign My Guestbook Read TributesTuesday, August 4, 2009 8:42 PM, PDTWe're back to 100% tubefeeds, as Joshua isn't interested in eating more than a few bites of anything (typically toast or a chip or a cookie) anymore.Eating is overrated anyway, though, right?The muscle biopsy site is about 85% healed after 4 weeks. I figured it was closed enough and allowed him to take a bath. If it becomes infected, it'll be my fault, butI looked closely at it and I really do think it'll be okay.When he walks without his braces on, his right heel doesn't hit the floor & he turns his foot in more than he used to. What is the significance of that? I don't knowfor sure. I'm just making mention of it in case someone later asks me how long he's been lifting his heel off the ground when he walks or turning his foot in. Bywriting it here, I don't have to actively remember because I can come back & look it up if I need to. :)Joshua remains stable and is generally happy, which I'm thankful for. He is tolerating 6 ounce feeds without any problem, he continues to drink milk & water from acup periodically throughout the day, and he's still a chatterbox. He's sleeping well and has many periods of activity each day when he is interested in playing with hissiblings (lasting up to 30 minutes each time). He needs to rest in between the bursts of fun, but after 20-30 minutes, he's ready to go again.He still has headaches and back pain, but he doesn't really complainabout it very much ~ he'll mention it in a matter-of-fact way and then go about his business. It's kind of sad to realize that he's gotten so used to chronic pain thatit's not a big deal to him any more. On the flip side, though, I'm glad he CAN deal with it and still function. I wish he didn't have to hurt, but at least it's notdebilitating. We are back to him waking up at night in pain and that pretty much bites, but there's not much I can do about it.I'm doing all right ~ feeling better about things now that I've decided not getting a diagnosis won't be the worst thing ever. Sure, it'd be psychologically helpful forme to know what is going on with Joshua, but if we never get a specific label, that isn't going to change anything for his life. It'll make it harder to plan for thefuture, but God says I'm not supposed to worry about tomorrow, anyway, so I guess this is one way to force the issue.Overall, I'd say we're at the top of the hill on this roller coaster ride, with things being as good as they get for Joshua (which is pretty decent, all things considered),so now we're just enjoying the view and the wind in our hair and hoping we get to hang out up here for awhile before heading down again.Sign My Guestbook Read TributesThursday, July 30, 2009 7:45 AM, PDTYesterday was a very bad day. Today, however, thanks to hours spent talking with two good friends & the prayers of others, I can honestly say I feel much better.Thank you.Dr. Anadiotis called me yesterday morning to tell me that the mitochondrial portion of Joshua's muscle biopsy results were normal. That they had tested for complex1 through complex 4 (there's a complex 5 that is impossible to test for on a living organism) and there was no significant abnormality.You'd think that would have made me happy to hear, but it was a crushing blow. It was yet one more non-answer and that was difficult to hear because everythingwe've checked for thus far has been normal, yet I have a 3.5 year old who is NOT and I would really like to know what is going on with him. Dr. Anadiotis wasdisappointed, as well, because he was one of the doctors who had been fairly convinced that Joshua's problems were mitochondrial in nature.The electron microscopy portion of the muscle biopsy has not come back yet, but Dr. A expects it will. If he has a form of muscular dystrophy, the results will beabnormal. Nothing to do but wait and see.Dr. A said that since whatever disease Joshua has is not metabolic in nature, that makes him think it could be neuromuscular. To that end, he referred Joshua to aphysiatrist to determine whether an EMG would be a useful test (it evaluates the conduction of nerve impulses to muscles) and to get it done if Dr. J thinks the resultwould be helpful (ie: not normal). Considering the test is performed by placing needles in muscles, I'm not gung-ho to put my kid through this one, so if the doctorthinks the results will be normal, we're not going to do it. Dr. Anadiotis said the same thing, telling me that if the physiatrist doesn't think the EMG will be abnormal,don't bother doing it.I know that sounds weird, but what he wants is to get one abnormal test result... something that does not come back normal... so that he knows which path to take. Hesaid he's had several "tough nuts to crack" over the years ~ kids who obviously have something wrong with them but elude diagnosis ~ and Joshua falls intothat category, but he would really like to find the answer because even though he wouldn't be able to help Joshua or fix him, he would like to provide me with someclosure so that I no longer have to search for a diagnosis. I, of course, appreciate his desire to do that. Having a label, a concrete diagnosis, would give me a measureof peace because at least I would know what my child has. Without a diagnosis, all I can do is explain his symptoms and when someone asks, "So what's going on withhim?" I have no answer.I need to learn to live with the reality that the odds are very high that we will never have a name for what is going on with Joshua.Dr. S, our pediatrician, told me yesterday that even though medicine has advanced so much, there are still children who show up with unknown and unnamed conditions.Doctors look for answers, but sometimes just can't find them, so we then deal with the symptoms and do the best we can. She didn't say so, but I think that is whereshe believes we are with Joshua. She did say she had hoped it was mitochondrial disease because she did not want it to be a bad diagnosis. And here I had thoughtmito WAS a bad diagnosis! Compared to many of the alternatives, though, I guess mito would have been more manageable. Dr. Anadiotis told me that theneuromuscular road was just as hard, if not harder, to travel. So.... not very encouraging, and that made me very sad yesterday, too. But after talking with a friendlast night (who happens to be quiteknowledgeable about neuromuscular conditions), I feel less intimidated by the possibility that this may be the road we walk with Joshua.I think I'm basically at the point of feeling that any diagnosis would be better than none.I am also at the point where I don't have any real hope that we're going to get a diagnosis.I'm moving toward reaching the point where I can accept that (thus my request for prayer that I can learn to live at peace within the unknown).There are two main difficulties (for me) associated with not knowing what disease/condition Joshua has. First, not knowing means not having any idea how thiscondition will progress and not having a prognosis, which makes planning for the future and making wise treatment decisions a challenge. If Joshua's not going to havea normal lifespan, then a surgery that is aimed at improving long-term quality of life (such as a Mitrofanoff or MACE) wouldn't be something I'd put him through. Ifhe's going to die by the time he's 10, getting him out of diapers would not be my highest priority and I would tell his urologist that. However, if he's going to live tobe 50 but will be completely dependent on others for assistance, then doing bladder/bowel surgeries to make his care easier would make sense. The question comes in,then, of which road to take, and if we don't have a diagnosis, then no one can give me an answer for those kinds of questions.The second difficulty associated with not having a diagnosis is a psychological one for me. I spent my teenage years hearing that I was a liar who made up stuff forattention. When I told about my brother molesting me, when I complained of pain in my ankles (that turned out to be torn ligaments) or pain in my shin (that turnedout to be a stress fracture), I was accused of lying for attention. It continued into my adult years, as well, with my mom not believing me when I told her David hadbeen diagnosed with autism and her saying that I was making it up to garner sympathy for myself. Then, when I called to tell her that David & Sarah were both havingsurgery for chiari, her response was, "You just aren't going to be happy until there is something wrong with every one of your kids, are you?" To say I've beenaffected deeply by the things my mom said would be an understatement. I fight against lies & accusations that I hear her voice speak in my head on an almost-dailybasis. And so, for me, one of the biggest challenges in Joshua not receiving a diagnosis is the fear that others will think I'm making up his symptoms for attention, orbecause they think I want there to be something wrong with my child.It's not true, of course, but it's a crippling fear. I have a suspicion that God wants to weed that out of me, to destroy the lie my mother planted 25 years ago, andperhaps He is using Joshua's problems as the means to achieving this in me. NO, I do not believe that God afflicted my child solely to do a work in me. God is not asadistic jerk. But I do believe He can use all things for good, and as I wrestle against the fear that seeks to consume me these days, I can see how some good couldpotentially come out of this situation (assuming I win the battle).Charley & I talked and decided that we will pursue a diagnosis as far as seeing the physiatrist (scheduled for August 24th up in Portland) and possibly doing the EMG ifthe doctor believes it will give information that would lead us further down the diagnostic path. If the results of the electron microscopy portion of the muscle biopsydo not tell us anything and the EMG (if we do it) does not give a definitive answer, then we will be done looking for a diagnosis. There is only so much energy that canbe devoted to this and I will rest in the knowledge that I did my best to get an answer that obviously did not want to be found.Looking at the big picture, Joshua is happy for the most part and he's got a team of doctors who care about him and work together really well with each other andwith me, so any issue that comes up will be addressed and treated. I will continue to treat Joshua as normally as possible, making accommodations where necessary,and adjust to each 'new normal' that comes our way. I know there will be times that I deal with everything better than others, but when I am feeling at anexceptionally low point, I know I have the support of my friends, both in real life and online, to hold me up and help me to keep going. I thank you all for being a partof that support group. I know I couldn't do this on my own and I am most grateful that I don't have to.Last thing: Dr. Anadiotis told me that the genetics counselor who had called to give me the skin biopsy results had not gotten it quite right. He explained that they dida fibroblast test, which looks forcollagenopathy (abnormalities in the collagen, or connective tissue), and they did a specific test for Ehlers Danlos type 7 (not 4 like I'd been told) because EDS type 7can't be picked up by the regular fibroblast test. Anyhow, the results for both were negative, which means that even though Joshua overproduces scar tissue &regrows bone & has fragile dura & doesn't heal well & has scars that widen over time, he doesn't actually have a connective tissue disorder. Even though his bodyACTS like he has a connective tissue disorder and even though everything LOOKS like he has a connective tissue disorder ~~ so much so that it's been written in hismedical records that he HAS a connective tissue disorder ~~ he doesn't really have one. Go figure.What does that mean? I honestly have no idea. And I never intentionally lied when I said that he had a connective tissue disorder because it's what I've been told forthe past 2.5 years. Everyone has assumed Joshua had this because, again, every sign points to his having a collagen defect. Dr. Anadiotis said he was shocked by theresult and that was why the lab had run the test twice. They told him the result was negative (no connective tissue disorder) and he said that couldn't be right; theymust have made a mistake, so they needed to do it again. But a second test got the same result. Despite having the physical manifestations of a connective tissuedisorder, Joshua doesn't actually have one. That won't change anything, I've been told. Since his body acts as though he has a collagen defect, he'll be treated asthough he does.It was a shock to hear that, but I was relieved to know Dr. Anadiotis HAD checked for all collagenopathies versus just Ehlers Danlos type 7. That re-established myfaith in the guy. :)Sign My Guestbook Read TributesWednesday, July 29, 2009 6:08 PM, PDTHad another port access today to draw more labs. Joshua's bicarb was back to low-normal (22 mmol/L), so he's officially out of the woods with regards to acidosis.Yea!Unfortunately, with the Diamox being completely out of his system, he's back to pre-medication headaches, backaches, retching & vomiting.What a trade-off. Normal electrolytes with pain & nausea or crappy electrolytes with no pain & nausea. Guess it's too much to ask for normal electrolytes with nopain & nausea. At least for the next 2 weeks while we wait for him to regain the weight he lost and get "very stable" again (per the ped). Then we'll restart theDiamox at half-strength and see if we can bring the symptoms under control without messing up his bicarbonate level.It has been a very hard day, not just physically, but emotionally, as well. Joshua has had periods of being happy and playful mixed with bouts of abject misery. I'vebeen talking with specialists in Portland throughout the day (will share more about that later... no, I'm not trying to be a tease; I just need more time to processinformation before I try to talk about it) and the conversations with them, in addition to some other stresses happening these days, has me barely holding on to myemotional sanity. I know many of you pray for Joshua and me... please pray that I will find a way to be at peace with the unknown and that I will be granted thestrength to walk the road I am finding myself on. I know that's vague, but that's all I can say today, and while I thought about not saying anything, I really wouldappreciate knowing others are praying because I am finding it very hard to do, myself.Sign My Guestbook Read TributesTuesday, July 28, 2009 6:39 PM, PDTJoshua saw the ped this afternoon. His weight is up 3 ounces, his perfusion is better, his urine is still very concentrated but contained no ketones and aside from asuboccipital headache he's had most of the day (back of his head at the base of his skull ~ you know, the chiari headache spot), he's doing much better than the pastfew days. Dr. S said we had "averted a major metabolic crisis". Yea us!We'll restart the Diamox in 2 weeks at half the dose. In the meantime, we'll see how he does.He will have labs redrawn tomorrow afternoon to ensure his bicarb is trending upward again. Dr. S is sure it is, based on how Joshua looked today as compared toyesterday.So... things are moving in the right direction for recovery from this, and hopefully, when we restart the medication at a lower dose, this won't happen again. I'mhoping we can find the place where we get the benefits of Diamox without the problem with electrolyte imbalance (even if that hope isn't the most-realistic one I'veever held onto).Sign My Guestbook Read TributesTuesday, July 28, 2009 10:01 AM, PDTAs of 10am, the fluid score is: 47 ounces in (since noon yesterday) & 5 ounces (plus 1/4 teaspoon) out.I think we're moving in the right direction since Joshua has perked up a bit, is talking more and asked to play on the computer. His color is much better ~ he's not sopale and he's not sweaty/cold anymore.I called the ped this morning to give her the update per her request and spoke with her nurse, who will call me back to let me know what I'm supposed to do today (stillgive continuous pedialyte by g-tube or go to bolus feeds or what?).The picture is from 10pm last night, when Joshua was asleep on my lap, looking pale and sweaty despite being very cool to the touch. I'm glad he doesn't look like thatanymore, as the chalky-white color of his skin was unsettling to me. He looks much better this morning and I'm expecting him to continue improving since the Diamoxis stopped for now and he's getting hydrated again.Sign My Guestbook Read TributesMonday, July 27, 2009 4:30 PM, PDTI am asking for prayers for Joshua.Over the weekend, he began complaining of headaches & stomach pain. He had bouts of nausea, gagging & retching. The amount of urine he wasproducing dropped significantly. He became more lethargic and pale.I took him to the pediatrician's this morning and she, too, was concerned by the dusky color of Joshua's skin around his lips & the blotchy redness aroundhis eyes. Over the course of an hour in her office, we watched dark purple half-moons appear under his eyes. He obviously didn't feel well, but asidefrom not wanting to sit up, he wasn't in a bad mood. Dr. S sent us over to the infusion clinic to get labs drawn and told us to come back afterward.The labs were essentially normal, with the exception of his bicarb level, which dropped to 13 mmol/L ~ it was 15 mmol/L last Friday and had been 22mmol/L when we started the Diamox. The drop of 2 more 'points' in three days was concerning. Dr. S had us start giving Joshua 1 ounce of pedialyteper half hour via g-tube and sent us home, saying she'd call after she heard from Dr. Huffman, the neurologist in Portland.Her nurse, Karen, called twice with updates, telling me that Dr. S was going to call with more details when she got a minute. She'd been conferring withthe neurologist and the nephrologist (kidney specialist) and she wanted me to continue pushing fluids, so I bumped Joshua's pedialyte to 2 ounces perhalf-hour. The nephrologist had said that if we couldn't get Joshua taking adequate fluids & peeing decent amounts, he'd have to be hospitalized.After he'd gotten 17 ounces, I cathed him and got 1/4 teaspoon of urine (yes, I had to collect it & measure the amount). That unnerved me, so I callednurse Karen to give the message to Dr. S. She told me to wait and she got Dr. S on the phone.In a nutshell, the Diamox has caused Joshua's significant loss of bicarbonate, which makes the body too acidic & that can be a very serious problem if leftunchecked. The neurologist said that she was very concerned about the bicarb level & not happy to hear what was happening. She wanted Joshua offthe Diamox completely, but the ped discussed with her that the medication *had* been helping and that Joshua had 14 days without head or back pain orvomiting and that was pretty much unheard of for him, and she (Dr. S) suggested getting Joshua past this little crisis and then restarting the Diamox athalf-strength. The neurologist agreed we could try that, but if it doesn't work or if Joshua has problems at that dose, too, she'll want to get him off of itentirely. And that, of course, would leave him with untreated pseudotumor cerebri ~ increased pressure in the CSF surrounding his brain and spinalcord ~ and that would be very difficult to accept for Joshua.The nephrologist said to stop the Diamox and treat Joshua for severe dehydration. He said that once we get Joshua rehydrated, he *should* start peeingagain and be fine. At this point, his labs show normal kidney function, so it's not like he's in kidney failure and not peeing because he physically is unableto. The nephrologist believes the lack of pee is due to Joshua just not having adequate fluid TO pee.Dr. S gave me the option of choosing whether I wanted to try to get on top of Joshua's hydration at home or if I wanted him hospitalized to get IV fluids.We were discussing the situation when she had another call from yet another Portland doctor come in, so she said she had to go & would call me back in abit.Charley and I are in agreement that we feel shaken about this. We had no idea Joshua was getting dehydrated. Ever since he's been on Diamox, he'sbeen drinking ALL DAY LONG. No exaggeration ~ the child is constantly asking for milk or juice or water, plus he was getting fluids via his g-tube, aswell. Dr. S said it wasn't enough to keep him hydrated because of the Diamox. It's scary to me that my child was getting severely dehydrated whiledrinking WAY more than he usually did and I had no idea it was happening.He's lost almost 2 pounds, too. His weight is down to 32lb,10oz from 34lb,4oz. I am assuming this is fluid loss and will come back once he's hydratedagain.Right now, I have Joshua getting a continuous feed of pedialyte at a rate of 4 ounces per hour. He's getting erythromycin every 3 hours to help hisstomach empty so he doesn't start throwing up. I am hoping this is enough to get on top of the dehydration and keep him out of the hospital.My concern is that when Joshua has gotten dehydrated in the past, it has landed him in the hospital for an extended period of time because dehydrationtriggers his GI tract to shut down & then he starts vomiting everything we try to feed him. What results is a slow process of getting him to tolerate feedsagain while keeping him on IV fluids for hydration, a process that has, historically, taken 7-10 days in the hospital. He hasn't reacted the same way tobeing dehydrated this time, but he's been on Diamox and that seems to be playing a huge role in this (since it's what has caused the dehyration to beginwith). My fear is that since the Diamox has been stopped, Joshua is going to start throwing up and then he's going to wind up in the hospital again. He'salready been complaining of head and belly pain on and off all day long and his face is still a chalky-white color.My prayer request is that Joshua would keep down the fluids that are getting pumped into him each hour and that we would get on top of his fluidrequirements and thus get him out of the severely dehydrated stage BEFORE the Diamox leaves his system entirely (and before he starts having his"typical" reaction to dehydration)..... I want him to stay out of the hospital, for so many obvious reasons.Dr. S said that Joshua is a very fragile little boy and, as such, she's willing and ready to put him in the hospital tonight, but it's my call whether or notshe does it. She said she's comfortable letting me try to get him rehydrated, or she'll put him in the hospital if it would make things easier for me. Whileit makes me feel really good to know our ped trusts me and believes I'm capable of taking care of Joshua at home, it also makes me nervous that I mightmake the wrong decision or that I would miss important signs that things are turning south. That said, as of right now, I'm going to try to keep him homeand deal with this here because it is never easier to put him in the hospital.Now, if Dr. S calls and has any new information, this plan might change. If that happens, I'll post another update letting you know.Sign My Guestbook Read TributesFriday, July 24, 2009 4:59 PM, PDTAccessing Joshua's port went well this morning. He cried because he was scared & because his incision isn't fully healed yet, so the 30-second scrub thatthe nurse had to do was painful, but he didn't even notice the needle going in, so that part was perfect.Our ped's nurse called this afternoon to tell me that Joshua's bicarb level is low (normal is 22 and his is 15), so he'll have to go back in on Wednesday tohave more blood drawn. If his bicarb level has dropped even more, the neurologist will be contacted & an adjustment to his medication dose willbe made. She made some mention of his CO2 level being 'off', as well, but the focus of the conversation was the bicarb issue.Low bicarbonate causes metabolic acidosis, which is the serious side effect of Diamox that the neurologist said we had to watch for. It's unfortunate thatJoshua's reacting to the medication this way because it is having such a fantastic effect on his pain (he's had NONE for almost 2 weeks + NO vomiting,either). But since metabolic acidosis can lead to coma or death, it's not something to mess around with, soooooooo we'll redo the labs in 5 days and gofrom there.If he starts throwing up or having other signs of not feeling well, he has to be seen right away. If he holds stable, however, we can wait untilWednesday.Here's to holding stable!!!On another note, the headrest for his wheelchair is finally in, so we'll get that attached next week ~ yea! It'll be so nice for Joshua to be able to lay hishead back when he's tired rather than having it flop forward or to the side.His new braces are being made and this time he chose the pattern he liked ~ one called "Tornado," which is swirls of red, blue, green, yellow & white. Ithink they'll be very eye-catching, but hey, that's what he wanted and since he's the one wearing 'em, I figured he should get to choose his AFO pattern.I'm not sure how long it'll be before we get those... probably a few more weeks.No news on the genetics front ~ I was told the mitochondrial results could be in as soon as two weeks after the biopsy was done, which would have beenthe 21st, but no one's heard anything yet, and the muscle fiber analysis portion could take over 4 weeks, so I won't expect to hear anything about thatuntil close to mid-August. I'm half-anticipating, half-dreading getting the results. At this point, a diagnosis would be a blessing, regardless of what thediagnosis is. I just want to know what we're dealing with here. Being able to plan for the future, regardless of what that future holds, would bepreferable to not knowing what might come down the pike and not having any idea whether Joshua's lifespan will be shortened by whatever is going onwith him or if he'll wind up needing a power chair (and thus a ramp into the house & a van with a lift and things like that) or what new symptoms mightcrop up unexpectedly. So if you want to pray, pray that we would receive a definitive diagnosis from the muscle biopsy and that we would have an ideaof what Joshua's future could look like.Thanks.Sign My Guestbook Read TributesMonday, July 20, 2009 1:20 PM, PDTJust a quick update & prayer request.Joshua will have his port accessed for the first time at the end of the week (blood drawn for labs to check how his body is doing with the Diamox) and I am asking forprayers that it will go well and that his skin will get adequately numb so he doesn't feel the stick of the needle and that he will not be scared.He'll have monthly blood draws and heparin flushes of the port and I will get the results of the labwork within 24 hours of the draw. As long as his body handles themedication well, we can keep him on it. So also pray for him to have good lab results, too.Thanks very much (in advance). I'll post how it goes at the end of the week.Sign My Guestbook Read TributesSaturday, July 18, 2009 5:09 PM, PDTJoshua appears to have gotten used to the Diamox because the extra energy he had for the first 4 days has tapered off & is now gone. He's back to sleeping longhours at night, being whiny & saying he's tired in the morning and sleeping 3+ hours in the afternoon.However, he's not complaining of any pain at all, and since that was the reason we started the Diamox in the first place, I still consider the medication to be a successand am glad he's getting it.He's eating about 70% of his calories and we're tubing the other 30%.I wish I knew why he had the big energy burst when we started the medication & why it's now gone. It was really so enjoyable watching Joshua run around with hissiblings & play exuberantly. I wish that would have lasted.Overall, he's still doing well and we're solidly in one of his stable periods. I'm going to be talking with the neurologist this week ~ doing a scheduled 'check-in' ~ andI'm interested to hear her opinion of the energy situation. I did read that Diamox can cause "excitement" (not sure what, exactly, that means) and I wonder if thatwas what we were witnessing. If so, then seeing his extra energy disappear as his body became accustomed to the medication would make sense.A part of me is feeling very disappointed. I had hoped that maybe Joshua's loss of energy & other neurological 'stuff' was due to pseudotumor cerebri rather than adegenerative condition. I know, that's probably really stupid of me to wish for that since the geneticist flat-out told me there was something wrong with my son. Butstill.... a mom's gotta hope, right? And so, when his initial response to the Diamox showed such a huge improvement in everything, including his energy levels, I allowedmyself to believe that maybe the geneticist & neurologist & neurosurgeon were all wrong. Seven days later and I'm feeling like a deflated balloon.I guess I go back to hoping the muscle biopsy shows us what is going on. It would have been more fun to have all the doctors be wrong, though.Sign My Guestbook Read TributesFriday, July 17, 2009 12:26 AM, PDTI heard from the geneticist's nurse regarding Joshua's skin biopsy results.She said, "The result is negative."I asked, "What does that mean, exactly?"She replied, "Oh, he doesn't have Ehlers Danlos, Type 4. That's the scary kind of EDS, so that's a good thing."Me: "That's great! So what kind of connective tissue disorder DOES he have?"Nurse: "Oh, I don't know. Dr. A only tested for EDS type 4. We don't have a name for Joshua's collagen defect."Me: "He only tested for ONE collagen disorder? Why not test for all forms of Ehlers Danlos, at least?"Nurse: "Um... hmmmm.... I really don't know. I'm sorry. You'll have to talk to Dr. A about that."Me: "Yeah, okay, I'll do that. Thanks for calling."Nurse: "You're welcome; I'll be in touch when we hear back on the muscle biopsy."Me: "Okay, thanks."Nurse: "Bye."Me: "Bye."I hung up and went to find Charley and tell him that the geneticist had done the skin biopsy only to test for ONE condition. Just one. I don't understand that at all.What he and I discussed was that the skin biopsy was going to hopefully give us a name for Joshua's connective tissue disorder. I was under the impression that hewas checking for multiple disorders, not just one variation of Ehlers Danlos.Pretty disappointing, especially considering how horrific the biopsy procedure was for Joshua (the doctor started the procedure when J's arm wasn't numb and he feltthe cutting).So we put him through that to find out absolutely nothing more than we already knew (that Joshua has a connective tissue disorder but we don't know which one).Wow. That was so worth it. Except not. I could have told Dr. A that Joshua didn't have EDS type 4 ~ if you read the symptoms, you'd see he doesn't fit the profile.Sheesh. I need to talk to the man to determine what he was thinking.Sign My Guestbook Read TributesTuesday, July 14, 2009 6:29 PM, PDTFinally finally finally, I have some really good news to report!!! :)Joshua started getting Diamox on July 11th. He gets 125mg, 3 times per day. The first two day was a little tough, with himsleeping even more than usual, complaining of his hands feeling weird (probably the parasthesia that's a common sideeffect), not eating more than 2 bites of anything before saying, "I don't want this," and throwing it away, & waking up withhead & back pain after each nap.On day 2, he woke up without a headache and with no complaint of back pain. Just to remind everyone, Joshua'sheadaches have typically been bad in the morning or after awakening from a nap (when he moves to an uprightposition after lying down for awhile) and he has complained of back pain every day. So... his waking with no headache orback pain was an auspicious beginning to our day. He was still tired and slept quite a bit (3.5 hour nap in the afternoon aftera 90 minute nap in the morning & still went to bed at his usual 9:30pm & slept through the night) and he wasn't interestedin eating, so we just tubefed him as always. However, after he woke (with no pain again) after his afternoon nap, hePLAYED OUTSIDE with his brothers for almost 25 minutes and when he came back inside, he was happy and didn't need tolie down to recuperate from his burst of energy. The older kids & I thought that he was talking more, too, but we weren'tsure if maybe we were imagining that or not.On day 3 of Diamox, Joshua again woke with no pain and again was tired after receiving his first dose in the morning, butafter an hour, he perked right up and HE ASKED TO EAT!!! People, this child has not asked to eat when no one else waseating ~ thus showing a sign of hunger versus engaging in social eating ~ since shortly after his first chiari decompression inApril, 2007! All of his us (doctors & Charley & I) had assumed that he had no sensation of hunger as a result of the brainsurgery. Maybe we're wrong! And you wouldn't believe what he ate ~ scrambled eggs with cheese, 1/4 English muffin withpeanut butter, 1/4 cup cereal with milk and a full sippy cup of milk! For a child who has not been able to tolerate more than5 ounces of formula in his stomach at one time without vomiting, this was a HUGE change! He refused lunch, opting for atubefeed, instead, but chose to eat dinner (he requested, and received, scrambled eggs again). He napped for 3 hours afterhis second dose & woke with no pain.I took Joshua to the orthotist to have casts made for new AFOs & everyone there commented on the noticeable difference inhis demeanor, level of speech and energy level. The orthotist said Joshua looked better than the last time he saw him andeveryone in the office was surprised and pleased by how much he talked during his hour-long appointment. His articulation ispoor, but the quantity of words being spoken has increased tremendously. He is happier, has more energy than he's had inmonths, and in the evening, after his nap, he & Isaac built Lego guns and ran around the house, chasing each other,laughing & having fun. Yes, I said RAN. Now, granted, Joshua's run is not like a typical 3 year old's run ~ it's more like afast walk with a little hop on each step ~ but I haven't seen him attempt to run in sooooooo long that it was a shock to seehim doing it last night.Also, he has started pooping on his own. Since his last detethering surgery (November 12, 2008), I've been giving himColace in the morning (a stool softener) and using an Enemeez (mini-enema) in the evening to empty his bowel. Butbeginning on day 3, Joshua has not needed his nightly enema. The drawback to this is that I'm now forced to change dirtydiapers, but you know, I'll take it and be happy about it!Today is day 4, and Joshua has had no complaint of headache at all. When I went to change his dirty diaper this afternoon,he said, "Ow," and when I asked what hurt, he told me, "It pulls my back and it hurts." Since we know his cord is tethered,it makes sense that my bending his legs backward in order to clean his booty would cause tension that would result inpain, but this is the first time Joshua actually articulated exactly what was bothering him instead of merely saying, "My backhurts." I apologized and brought his legs down to a more-comfortable position before finishing cleaning him up. About 5minutes later, I asked if his back hurt and he said, "No, nothing hurts," before running off to play with Isaac again.He has not had a tubefeed all day. He asked to eat a strawberry (he's refused to eat fruit his whole life) and actually wanteda smoothie, so we gave him a yogurt/berry smoothie and he drank the whole thing (about 1/2 cup). At dinner, he ate half ahotdog & some french fries!Aside from about an hour of lethargy in the morning after getting the first dose of medication & taking a long nap everyafternoon, Joshua's energy level has greatly improved. He is able to play for an hour before needing a rest, and when hedoes need to rest, it's for 5 minutes, not 90. I'm not hearing, "I'm tired; hold me!" a dozen times every day.I don't know if I can adequately explain just how excited I am right now as I write this post. It's as though having high CSFpressure was compressing a bunch of nerves in Joshua's spinal cord and now that the pressure has been reduced, the signalsare making it from his brain to where they need to be. I have no idea if that is even possible, but that's my theory. :) Andto have him out of pain, without headaches and/or backaches every day, is amazing. The eating & pooping on his own &increased energy & increased talking are other perks I never expected but am thrilled about, as well. The benefits of Diamoxare definitely outweighing the side effects at this time. Yea!!!I cannot WAIT to take Joshua to the neurosurgeon so she can see for herself what Diamox is doing for this child. After allthe arguments she & I have had over the past year where she told me dismissively & with certainty that Joshua did nothave pseudotumor cerebri & refused to do an LP to check for it (and got annoyed with me for continuing to bring up thesubject), it is extremely gratifying to know I wasn't crazy. Special thanks to Dawn for helping me to advocate for Joshua onthis issue. If it hadn't been for her continuing to push me to insist that Joshua be evaluated for PTC, I probably would havegiven up pushing Dr. W on it. So THANK YOU, Dawn! I owe you!!!I have allowed myself to wonder if maybe Joshua does not have any kind of degenerative condition after all... if maybe theneurological decline of this past year or so has been due to high CSF pressure. I don't know if that's possible (I guess we'llknow when the muscle biopsy results come back), but seeing all of the positive changes in Joshua over the past 4 days, indirect correlation with giving him Diamox, gives me a hope that I have not had for a very long time and I'm going to hang onto this happiness for as long as I can.P.S. I heard from the geneticist's nurse at the end of last week. She said that the geneticist had called the reference lab tofind out what was taking so long in getting the results of Joshua's skin biopsy (done May 12th) and had been told they'dneeded to re-incubate the cells in order to redo the test, so it would be a little while more before we hear anything. I askedwhy they'd need to redo the test and the nurse said either the lab had messed up on the first try or they'd gotten anunexpected result that they wanted to check on by redoing the test before sending the results to the geneticist. I'd like tohope it's option #1, but won't be surprised if it turns out to be option #2. Either way, I don't care right now. I'm too busybeing happy as I listen to my youngest talk to his sister and brother while they play a game together.Sign My Guestbook Read TributesThursday, July 9, 2009 8:44 PM, PDTJoshua picked all the dermabond off his thigh and popped the incision from his muscle biopsy wide open tonight, thus necessitating a trip to the pediatrician's office.I took 10 minutes off my usual time necessary to drive to her office. Thank goodness for no cops on the freeway!The ped washed out the wound and used steri-strips to partially close the hole, but she couldn't stitch it closed because she said it would definitely become infectedand then abscess. Not something we want, obviously. So she used 4x4 gauze pads to cover the wound and then wrapped gauze & then co-ban around Joshua's entirethigh to keep him from digging into his the hole, which she said would hold him over until tomorrow, when he sees his regular pediatrician.It appears that his sensation to pain has been lost higher than I thought. Last I knew, he wasn't feeling pain to mid-thigh, but with what happened tonight, it'sapparent that his sensation is deficient to almost the top of his thigh, at least on the right leg. That was sad to realize.Tomorrow, Joshua will see the ped again and may need to be seen at the hospital at "wound clinic". I have no idea what that is or what they do, but I was told tonightthat Joshua will probably need to be seen by them for specialized dressings to help prevent infection while this wound heals from the inside-out, which is going to takeawhile.So much for an easy recovery & small scar. I know that in the big scheme of things, this is nothing, but emotionally, I am not handling things well right now, so it*feels* like a big deal.Sign My Guestbook Read TributesWednesday, July 8, 2009 2:57 PM, PDTWe're home again and geez, am I tired! I'm hopeful that I'll get some deep, restful sleep tonight because I honestly need it.The trip home was uneventful, just the way I like it. Joshua slept for 4 hours straight and woke up just about 15 minutes from home.As we were leaving town, the neurologist called to tell me that she'd spoken with Joshua's ophthalmologist and since everyone was on-board with the idea of tryingJoshua on Diamox, she was going to go ahead & prescribe it for him. She said she'd gotten Joshua's lab results from yesterday and they looked all right, but somevalues were low, so we'll need to draw regular labs during the trial period (4-8 weeks) to make sure the levels of everything stay in the "okay" zone.I have to keep a journal of his symptoms & side effects for the neurologist to determine how beneficial the medication is. After 4-8 weeks, if it appears that theDiamox is helping, we'll wean Joshua off of it and then see if his symptoms return. If they do, that will convince the doctor that the Diamox is necessary & he'll getthe official diagnosis of pseudotumor cerebri. If the medication doesn't appear to help, she will want to change over to the Topamax and it will be assumed thatJoshua does not have increased CSF pressure.The potential side effects of Diamox are similar to those of Topamax, minus the cognitive problems, so Joshua could experience numbness or tingling in his hands &feet, loss of appetite (no big deal there since he doesn't get hungry, anyhow, lol), change in how food tastes, increased urination (good thing I'm cathing him every 3hours now) & electrolyte imbalance. There's probably more potential side effects, but those are the ones the neurologist told me about.Joshua will see his pediatrician on Friday afternoon & then we'll get set up with the infusion clinic people at the hospital (local) because Joshua's port will need to beflushed with heparin every month to prevent blood clots from forming and blocking the catheter that sits just above the right atrium of his heart. I am hoping theywill teach me how to access his port so I can do the flushes at home, myself, rather than having to stress Joshua by taking him to the hospital.Soooooooo... that's where things stand now. I still haven't heard anything about the skin biopsy results and it will take 2-4 weeks (or thereabouts) to hear any resultsfrom the muscle biopsy, but at least the testing part is done, so all I have to do is wait. And of course I'll update when I hear anything.Sign My Guestbook Read TributesTuesday, July 7, 2009 1:33 PM, PDTWe're back at the Ronald McDonald House and Joshua is happy to be here. He is wobbly and very tired, but his mood perked up once he realized we were really leavingthe hospital.Like Karen said (thanks for updating here for me, K), the handoff was horrible, even with the anesthesiologist taking the time to give Joshua a second dose of versed.He has been through this so many times that he can't be fooled or distracted. He knows what's coming when we go downstairs to the pre-surg waiting area & he didnot want any part of it this morning. It hurt my heart to have such a lousy handoff... they had to literally peel him away from me as he was crying, "I wan' you go withme, Mom!" & "Don't let them hurt me!" Bluntly put, it totally, totally sucked.There were some blessings today, too. Joshua only had a few coughs this morning, which was a definite answer to prayer (thank you!). Both procedures wentperfectly. Joshua did not throw up in recovery (a first). His nurse removed his IV soon after he returned to short stay when she heard him carrying on about it &when I expressed surprise that she'd take it out so soon, she smiled & said, "Well, we normally wouldn't, but this is Joshua, and he's special. We don't want himbeing unhappy." That warmed my heart to know the nurses care about my little guy, too, and that they want to minimize his stress just as much as I do.We'll rest here this afternoon & head home tomorrow. Joshua has noticed both of his incisions and has been disturbed/bothered by the port, most likely because ofthe lump that can be felt, & he wants to keep his thigh covered, but aside from that, he seems to be fine (just more sleepy than usual).Anyhow, it's over & done and I'm relieved. I'll put a few pictures up after I post this.Thank you for praying and checking in to see how my little man is doing.Sign My Guestbook Read TributesTuesday, July 7, 2009 7:54 AM, PDTThis is Karen, Kate's best friend, writing to tell you that the surgery is on time and going on right now. Joshua had the worsthand off they've ever had this morning. He was terrified as soon as he realized where he was and he was distraught andscreaming for Kate not to leave him as he was taken back for surgery. The anti-anxiety drugs he usually takes didn't workthis morning. It was horrible for both Kate and Joshua and she wants me to ask you to pray for no complications.They have been assuring him that as soon as he wakes up he will get to leave, but if he has complications, he won't get togo home and then he might not ever believe Kate about anything again. Poor little lamb has really been through thewringer.Kate wanted me to mention that 5 years ago today they first got on this surgery train when Sarah had her first Chiarisurgery. They haven't gotten to get off yet, but they hope this crazy train comes to a halt soon!Kate doesn't have her computer with her right now, so she will update later when he is all done.Be praying!Sign My Guestbook Read TributesMonday, July 6, 2009 5:57 PM, PDTThe neurologist called and we discussed Topamax versus Diamox. She said she'd spoken today with Dr. Wehby and the neurosurgeon gave her conflicting informationwhich had her feeling stuck between a rock & a hard place. Basically, the neurosurgeon is saying that she doesn't think Joshua's problems are all due to high pressure& she is unwilling to put in a shunt for pseudotumor cerebri, but she still fully supports conducting a trial of Diamox, which is the medication typically prescribed totreat pseudotumor cerebri (when trying to avoid putting in a shunt). Dr. Huffman (neurologist) said she doesn't know how she can be expected to prescribe amedication for high CSF pressure without hard proof of that increased pressure. I told her I understood her dilemma, but I couldn't force Dr. Wehby to do a lumbarpuncture in order to give her the evidence of increased pressure.I believe that when Dr. Wehby told Dr. Huffman that she didn't think Joshua's problems were all due to high pressure, she was referring to the assumption thatthere is an underlying genetic condition causing some of Joshua's symptoms. I don't think Dr. Huffman understood that, however. She's relatively new to Joshua'steam of doctors, though, so I can't really blame her for not knowing everything about him yet.I am a bit frustrated with Dr. Wehby, though, because she is not making this easy for Dr. Huffman and she absolutely could have done so by offering to do an LPtomorrow when Dr. Bliss has Joshua knocked out in the OR. I told Dr. Huffman that I didn't know what to do because as a parent, I have zero power whatsoever. Shereplied that she wasn't saying she wouldn't do a trial of Diamox because she knows Dr. Wehby would like her to do one, but she could really use some hard evidencethat the medication is an appropriate one to try. To that end, she is going to contact Joshua's ophthalmologist tomorrow and get his records transferred up. I toldher she wouldn't find any evidence of papilledema (swelling of the optic nerves) since Joshua's never had it, but the absence of papilledema did not exclude thepresence of PTC in kids who also have chiari malformation.She also asked if we could get labs drawn tomorrow to get a baseline of Joshua's electrolytes because Diamox has a serious side effect of messing up thebody's electrolyte levels, as well as paresthesia (the same numbness in hands/feet that Topamax causes), fatigue, decreased sweating and more. I asked if it had thesame cognitive side effects that Topamax has and she said, "Not usually." I told her that if she wanted labs drawn, I knew it wouldn't be a problem to get them sinceJoshua will be in the OR and they could get 'em then, but she'd have to write the orders because no one is going to listen to me.The conversation ended with the neurologist saying she would touch base with me by the end of the week to discuss which medication she wants to start Joshua on.I'm hopeful that she will choose Diamox because that is typically the medication used to treat pseudotumor cerebri and if I have to put Joshua on something that isgoing to potentially have a lot of nasty side effects, I'd rather it be the one that ALSO has the potential to help him the greatest amount.Sign My Guestbook Read TributesMonday, July 6, 2009 3:49 PM, PDTWe're here again at the Ronald McDonald House. Joshua traveled well, which made the trip pleasant.Please pray that this weird cough he has had for the past few days will go away before tomorrow. I don't think he's sick at all ~ the cough has notresponded to cough medicine, but has gone away after he ingests a decent amount of caffeine, which makes me suspect that it's a resurgence of theweird cough he had when his chiari was blocking the flow of CSF back in 2007 & that using caffeine to constrict his blood vessels & thus reduce thepressure in his brain is what "cures" the problem. I'm not worried about the cough itself; I just don't want someone thinking he's sick & telling me weneed to reschedule the procedures 'cuz that would be frustrating. So... please pray for the cough to abate before morning. It's not a constant thing, butit tends to be worse in the morning & what we need is for it to not start up tomorrow.We have to be at the hospital at 6am and surgery is supposed to start at 7:30am. Dr. Bliss expected it to take about 2.5 to 3 hours.I'll post here again after it's over. As always, I thank you for praying for Joshua's peace of mind leading up to the surgery, for Dr. Bliss & for every othermedical professional who comes into contact with my son during the day, and for Joshua to do well after surgery. It gives me a lot of comfort knowinghe's being covered in prayer.Sign My Guestbook Read TributesSaturday, July 4, 2009 8:57 PM, PDTI've opted to not start Joshua on the Topamax yet because the package insert said to "talk to your doctor or dentist prior to any surgery, as you may need to stoptaking this medication". Since Joshua is scheduled for surgery in 3 days, I kinda thought giving him a medication that might force the cancellation of his surgery wasnot a great idea. I called the pediatrician to verify that this was an acceptable plan of action & she agreed that it was, so I'm comfortable with the decision. I figurewaiting a week to start it isn't really going to make or break anything.I put in a call to the neurologist on Friday and left a message asking if prescribing a medication that needs to be weaned prior to surgery is really the best drug ofchoice for a child who, historically, has had surgery on a regular basis for the past 2 years (I worded it a bit more politely than that, though). I do think there's agood chance that Joshua's frequent surgeries are a thing of the past since his chiari is stable & Dr. Wehby isn't going to be detethering him multiple times each year.As long as he doesn't get a shunt, I don't expect to be seeing the neurosurgeon very often anymore (wouldn't that be awesome?!). However, I thought I'd pose thequestion to the neurologist, anyhow, because if Joshua were to get an infection in his port & need to have it removed, we wouldn't have adequate time to graduallywean him off the Topamax and I don't know how that would be handled. So I'll hopefully connect with Dr. Huffman's office on Monday to get an answer.I've read a bunch about Topamax and will flat-out admit that I'm apprehensive about giving it to Joshua. If you go to this website, you can read about the side effects experienced bypatients who have taken Topamax. The overwhelming majority (1046 respondants thus far) have had cognitive problems as a result of taking the medication (troublewith word retrieval, slow processing speed, losing their train of thought, not remembering how they got somewhere, spelling ability going down the tubes, etc), as wellas numbness/tingling/sharp pain in their hands, arms, legs & feet. A large number of people have weight loss because they have no appetite & food and drinks tasteterrible to them. There are other worrisome side effects, but those are the main ones that almost every single person who responded said they experienced.The potential side effects concern me because Joshua is finally interested in eating food & I don't want him to stop. Also, I personally would hate to have numbhands/feet or tingling sensation in them & I don't think my son will enjoy it, either. And the cognitive problems? Who would want the equivalent of Alzheimer's fortheir 3 year old? And what about loss of coordination? Like Joshua doesn't fall enough on his own? So... yeah... it concerns me.I am trying to give this big worry to God. I know He loves Joshua even more than I do and I want to believe that He will protect him as we trial this medication. Iknow that increased CSF pressure that goes untreated will eventually cause damage to a child's brain, so I feel as though we have to try something, and since I agreewith Dr. Wehby's assertion that we should try to avoid placing a shunt in Joshua, medication is all we have left to try. Sooooo.... I'll take a deep breath, pray forGod's protection over Joshua, and when we get home from Portland and he is on the road to recovery, I'll start the trial of Topamax. I would greatly appreciatehaving others join me in praying that the medication would work well for Joshua without any side effects.Thanks.Sign My Guestbook Read TributesThursday, July 2, 2009 3:56 PM, PDTHello from home! We had a safe drive home & were hit by 102 degree temps. Yuck! Portland was a good 20 degrees cooler, which was NICE!Thanks for your prayers regarding Dr. Wehby ~ they worked! She was the friendly & kind doctor that I've known her to be in the past (before she got so utterlyfrustrated by my kid). When I brought up the possibility of pseudotumor cerebri (PTC) again, instead of getting irritated with me (which is what has happened thepast two times I mentioned it), she calmly told me that Joshua didn't have the typical symptoms for PTC. I agreed with her that he didn't, but then explained thatthere had been a study done showing that 50% of kids who don't have resolution of their chiari symptoms after decompression have PTC and their symptoms are notwhat is typically seen (ie: no swelling of the optic nerves ~ called papilledema, and no change in the size of the ventricles). She gave a little snort & asked, "Yeah? Andwho did this study?" I pulled out a copy of the study (just "happened" to have it, complete with highlighted important parts, LOL) and handed it to her as I answered,"Dr. Frim." She seemed shocked and told me, "David Frim in Chicago? He and I are good friends!" She took the 2 page article from my hand and... surprise of allsurprises... she sat there and read it! Then she half-muttered to herself, "Okay yeah, I see what you're getting at.... now... what did he do with these kids? Awcrap... they were shunted... okay, was it in their backs or brains? Crap.. VPs...." (VP is ventriculo-peritoneal, which is a shunt in the brain, versus an LP, which isa lumbar-peritoneal shunt in the back).Dr. W agreed that Joshua could have PTC, but said she does not want to put a shunt in him unless she absolutely can't avoid it because with his connective tissuedisorder & propensity for scarring so badly, she can guarantee we'd be in her office ~ and the operating room ~ on a really regular basis & it would be horrible. Iwould be inclined to think Dr. Wehby was exaggerating or "Oh, she can't possibly predict that happening," but I know of a girl (online) with spina bifida who also has aconnective tissue disorder and she started out a very bright little girl, but after 27 shunt revisions & a bunch of scarring within her brain, she is now mentallyretarded and has multiple learning disabilities & her doctors had to do some specialized mapping of her brain to try to find a place they could put her shunt and theyfound nothing available that hadn't been tried or was a scarred-up mess. If we can avoid that scenario with Joshua, I (obviously) want to. I know what Dr. Wehbyfears is very real, and I agree with her that if we can treat Joshua for PTC without having to put in a shunt, it's the best option.Dr. Wehby told me that she fears if Joshua had a shunt, a malfunction could be fatal. She also said (again) that if has to get a shunt, we'd have to move up toPortland because every time Joshua got one of his killer headaches & was vomiting, we'd all wonder if it was his shunt and he'd end up having to come in to getchecked. Basically, the picture she painted was a scary one and not a road I want to go down unless we have no other choice. I told her that I'm in agreement that weshould treat him with medication, but if he ever gets to the point where he absolutely needs a shunt, I want him to get it even though the risks are high. Dr. W saidshe agreed with that, as well, but reiterated that she does not want to have to do it. She finished off by saying, "I don't wanna do it; you don't wanna do it. If wehave to do it eventually, we will, but I know you'll end up regretting it and so will I." Not the most comforting statement, but I appreciated her honesty & beingstraightforward with me.She agreed with Dr. Huffman's choice of Topamax as the medication to try first, so that's what we're going to do. We will hopefully see a reduction in headaches &vomiting without an increase in coordination difficulties and/or other side effects. As long as the benefits of the med outweigh the side effects, we'll keep Joshua onit.As far as his MRIs go, Dr. Wehby said she doesn't need to do anything surgically at this time (yea!) because she isn't sure how much of Joshua's symptoms are due tohis cord being tethered and how much are due to whatever underlying condition he's got. She said she wants to see what the muscle biopsy shows first and then makea decision for her part of Joshua's care, which makes sense to me. I'm not interested in putting him through unnecessary surgery, that's for sure! She said shewanted to see if he has a form of muscular dystrophy, and she confirmed that his reflexes in his legs/feet are absent & they're weak in his arms.As for the reduction of CSF at the back of his brain, she said that every time Joshua's head is hyperextended backward, he's going to have scar tissue being pushedup against his brain & temporarily impinging the flow of CSF, so the easiest treatment for that was to NOT hyperextend his neck. lol Since his chiari is stable at thistime, the only neurosurgical procedure that might offer Joshua relief from his symptoms is a shunt, but as I already explained, that isn't going to happen unless we'veexhausted every other option first (and even then, it may not happen... depends on what we find out from the muscle biopsy).After the appointment with Dr. W was over, Adam, Joshua & I checked out of the Ronald McDonald House (such a blessing of an organization that deserves tobe financially supported by anyone looking for a worthy cause to donate to!) and got on the road for home, and 4.5 hours later, here we are. Charley is still not home(thus why I have the opportunity to type this update), as he had to take Isaac to speech therapy & Emily went along so she could be dropped off at her friend's housefor a playdate, but it was fun coming home to Megan, David & Sarah. :)We're happy to be home and I plan to enjoy the next 3 days before we go back north for Joshua's 2 surgical procedures (we'll leave on Monday). Tomorrow is Charley& my 18th anniversary & then there's the 4th to celebrate, as well.I'm thankful for the prayers sent up on Joshua's behalf these past 4 days by so many of you. He did exceptionally well this trip, which made everything so mucheasier to handle.Oh.. and a quick "p.s." The geneticist's nurse called just a minute ago to tell me that Dr. Anadiotis had contacted the lab to find out what was taking so long on thecollagen studies from Joshua's skin biopsy and he was told there have been some "technical difficulties", so they're expecting the results some time next week. Thenurse told me that she thinks the technical difficulties involve people not wanting to work so they can leave early for the 4th of July. She also mentioned that Dr.Anadiotis was interested in the mitochondrial studies more than the muscle fiber analysis portion of the muscle biopsy, so he'd be pestering the lab for those resultsright away. I told her that that makes the score 2 for muscular dystrophy & 2 for mitochondrial disease, so what did she want to bet he wouldn't have either?She agreed that she could see Joshua being "one of those kids who defy a diagnosis," but assured me Dr. A wouldn't give up trying to figure him out, so that gives mehope that someone on Joshua's medical team will eventually find the answer we're all searching for.Sign My Guestbook Read TributesWednesday, July 1, 2009 4:48 PM, PDTToday was a busy, busy day. Here's the rundown of new information:~ Dr. H, the neurologist, said she spoke with Jenny, Dr. W's P.A., about her suspicion that Joshua may have pseudotumor cerebri (PTC ~ the condition I've wonderedabout and had Dr. W blow me off about multiple times in the past year), and with his pattern of headaches & the duration/frequency of them, she (and Jenny) wouldlike to start Joshua on a medication that will hopefully help reduce the headaches by reducing the pressure in his head (ie: begin treating him for PTC even without afirm diagnosis to see if it helps). She's putting him on Topamax & I'm to report back to her in 2 weeks to let her know if there's been any improvement. I'm to callher immediately if Joshua develops any kind of rash or if his coordination gets substantially worse. She said all anti-seizure meds can cause dizziness, which could be aproblematic side-effect for Joshua, so we need to watch that closely.He has no reflexes in his knees or ankles. He showed delayed reaction in his motor movements and she is concerned that his cognitive level has decreased since shelast saw him in April. For that reason, she wants him evaluated by a neurodevelopmental pediatrician & she wants Joshua to have neuropsych testing so that a baselinefor his cognitive abilities can be mapped out for comparative use down the road ~ in case he appears to decline more at a later date, the doctors will know where heused to test at. I recognize the logic in doing the testing to establish Joshua's current level of functioning, but it makes me sad to know that the neurologist expectsfurther decline & therefore wants a report to be able to compare his future functioning level against. Yeah, I know... I know that, barring a miracle from God, furtherloss of functioning is going to happen, too.... it just sucks when reality gets shoved into my face so bluntly.~ I got the radiologist's report on Joshua's MRIs. In a nutshell, the report says there is reduced CSF flow at the back of Joshua's brain where the skull meets theneck, which is not a good thing (technical speak: "CINE imaging shows restricted CSF pulsations through the posterior aspect of the foramen magnum."). Will it besignificant enough that Dr. W wants to do something about it? I don't know yet. I'll find that out tomorrow.The spine MRI showed significant scarring & lipomatous tissue with a low-lying conus (tip of the spinal cord ~ it's supposed to be at the level of L1 and Joshua's ispulled down to the sacral level right now). There is no movement of the spinal cord during CINE imaging (it's supposed to move; the fact that it didn't means the cordis stretched tight, which is obviously not a good thing). Again, I don't know if this will concern Dr. W enough to want to do something about it at this time. I'll reporton that tomorrow.~ Dr. L, the urologist, wants Joshua to be cathed 5 times a day instead of 4 times, so I'll bump up his cathing to every 3 hours rather than every 4. Dr. L is going todo urodynamics testing on Joshua to determine what his bladder's storage capacity is and whether his bladder walls are floppy & not squeezing enough or if they'retoo stiff & squeezing too much/too often to determine why Joshua is leaking in-between cathings. Dr. L wants to start working toward social continence for Joshua,which (for anyone who doesn't know) is when Joshua would be able to stay dry in-between scheduled caths & would not have any poo accidents in-between his dailybowel program, which would enable him to get out of diapers. It's the spina bifida equivalent of being potty-trained. :)~ Dr. A, the geneticist, called and said that he still does not have the results for the skin biopsy & he's not sure why, but he will call me when he gets the report. Healso told me that he'll be splitting the tissue from the muscle biopsy and sending half of it to Buffalo, New York for evaluation of mitochondrial defects & the otherhalf to a local lab for the evaluation of the muscle structure and some other stuff... whose names I can't remember and I couldn't write down as he said 'em because Iwas driving at the time he called... something like immunohistomicroassay something-or-other. lol Anyhow, Dr. A said it would take 2-4 weeks to get the results fromBuffalo & 4 weeks or longer to get the results from the local lab. He then asked if I had any questions for him and I asked what would we do if the muscle biopsy isnormal. He answered that he is certain there is something wrong with my son (yes, he said it that bluntly) & he has been doing the testing in the order of most-likelyconditions to least-likely, so the reason he's doing the muscle biopsy is that it's more-likely an answer will come from that test, but if an answer is not gleaned fromthe biopsy, that doesn't mean there's nothing wrong with my son and so he will then move to "the next thing" (which he didn't specify & I didn't ask). He said thatif Joshua's problem is not mitochondrial in nature, but instead a defect within the muscle fiber, itself, and if he has a form of muscular dystrophy, we should be ableto learn that information from the biopsy.Soooooooo.... that's what I learned today. Phew.Joshua did very well at his appointments ~ so much better than normal! He didn't cry once and he actually talked to the doctors, too, which is totally atypical forhim. Thanks to everyone who has been praying for him because I have truly seen the impact of those prayers. I know that probably sounds hokey to say, but is reallytrue. For him to not freak out and scream/cry whenever a doctor or nurse attempted to touch him is amazing. It's also been a huge relief and has made this tripabout as pleasant as it could possibly be.Tomorrow is visit-the-neurosurgeon day and then we get to go home!!! Yea!Sign My Guestbook Read TributesTuesday, June 30, 2009 10:14 PM, PDTI put up 4 pictures from Joshua's MRIs on the photo section here. One from his brain scan and 3 from his lumbar spine scan. I don't know if they can be made bigenough for you to see well, but hopefully it'll give you an idea of what things look like if you're interested.I plan on going to the hospital tomorrow to get a copy of the radiologist's report so I'll have an idea of what he thought of it (he'll compare today's MRIs to the scansdone in February) before I meet with Joshua's neurosurgeon. I'll share more tomorrow after I get that information.Sign My Guestbook Read TributesTuesday, June 30, 2009 12:49 PM, PDTDay 2 is over with ~ yippee!!!We were at the hospital at 8:30am and got out of there just a bit before noon. When the nurse came out to the waiting area to get Joshua, she asked, "Are youJoshua?" My kiddo turned his head, let his gaze travel up and down in appraisal of the woman talking to him, and when he realized she was a nurse, said, "Nope!" andcontinued playing with his stickers. LOL That made the nurse & me laugh so hard!Joshua handled the prep for his MRIs much, much better than he typically does (see? Prayer does work!) and there was no crying until the anesthesiologist begangassing my little guy. Once he was asleep, I laid him on the MRI table & left and 1.5 hours later, the scans were done.Afterward, Joshua was gagging & throwing up quite a bit because the anesthesiologist couldn't get an IV going on him, so he opted to use gas for sedation through theMRIs. We gave him some zofran and after another 20 minutes of misery, he stopped retching & we were able to get him dressed & get out of there. We are now atthe RMH in one of the tv rooms. Joshua is laying down playing his gameboy, Adam is watching Law & Order and I just got done looking at the CD of the scans.To my unprofessional eye, Joshua's brain MRI looks essentially the same that it did in February. He doesn't have more than a few millimeters of space at the foramenmagnum junction (where his skull meets his spine) & his ventricles are small, but it looks almost identical to the scan in February, so I'm assuming that it's fine (andDr. Wehby will tell me for sure on Thursday morning when we see her).As for his spine, I have no clue. I don't see an obvious collection of fluid (pseudomeningocele) like he had in February, but there are some obvious changes ascompared to his February scan, so.... <shrug>... I dunno. I'll see what Dr. Wehby says. It could just be a lot more scar tissue formation.The curve in his spine is more pronounced, as well. I don't know if he's tethered so significantly that it's making his scoliosis worse or if the curvature is a result ofhis recent growth spurt. Again it's a big 'ol <shrug> from me. One more thing to talk to Dr. Wehby about on Thursday (or maybe Joshua's orthopedist, instead).Joshie-bear is pretty loopy and tired now, so we're going to lay low here at the RMH for the rest of the day.I know, not much to report, but I figured I'd share what we've been up to. :)Tomorrow is neurologist in the morning & urologist in the afternoon.Oh, and still no word from the geneticist about the skin biopsy results. I went by his office yesterday (can't remember if I mentioned that in yesterday's post or not)and was told by the nurse that she'd see if Dr. Anadiotis had seen the results & then have him give me a call. Silly me assumed that that implied the results were inand that the doctor or nurse would be calling sometime that day. So I need to either call or go back up to the hospital (it's just across the street, so not like it's ahassle to go there) to see if I can find out if anyone has any news on that front. If/when I hear something, I'll post it.Sign My Guestbook Read TributesMonday, June 29, 2009 3:33 PM, PDTI'm so glad we got to start off our appointments with Dr. Bliss ~ the general surgeon. He is wonderful with Joshua, remembered him from when he did the emergencyabdominal surgery in September, 2007 (and bonus umbilical hernia repair "since (he) was in there"), was amazed at how much Adam has grown in 2 years (said, "Youwere tall the last time I saw you, but now? WOW! I think you may actually hit 7 feet!") and was just a really pleasant guy to chat with.He explained the two procedures he'll be doing and was awesome about showing me a port & demonstrating step-by-step where it'll go and how he'll put it in. He gotserious for a few minutes when he was explaining the possible complications (nicking a lung, which would cause a pneumothorax and require a chest tube ~ 1 in 100 odds,or puncturing the blood vessel, which would require a large horizontal incision so he could open the chest area & repair the leak ~ 1 in 1000 odds, or infection, whichwould require removing the port, keeping him on antibiotics for a week or so & then taking him back to the OR to put in a new one ~ he didn't give me the odds of thathappening), but afterward, he lightened up again. Obviously, we're hoping for a complication-free procedure for implanting the port, but he wanted to make sure Iknew what could happen in the OR. I appreciate thorough doctors like that!As for the muscle biopsy, he'll take one or two tiny pieces of the quadricep (each about the size of the tip of your little finger) from Joshua's right thigh. He saidthe reason he may take more than one piece is because Dr. Anadiotis (geneticist) sends the specimens to specific labs depending on what he's testing for. He knowsone piece will go to Buffalo, New York to be tested for mitochondrial defects (that test will take about a month to get results from), but said he needs to ask Dr.Anadiotis if he'll want a second piece to go to some other lab on the east coast that tests primarily for structural defects & dystrophies. I think it makes sense totest for everything since I've heard hypotheses for a diagnosis ranging from mitochondrial disease to congenital muscular dystrophy & I'd rather not have to do asecond muscle biopsy sometime down the road, and Dr. Bliss said he agreed with me, so he was going to check with Dr. Anadiotis to ensure that if he (Dr. A) needs twopieces of muscle, he gets them. Again, I was pleased to know that this surgeon is thorough & thinks ahead.It was nice having time to get to know Dr. Bliss a little better. The first time we met was in an emergency situation and there wasn't any time for him to do more thanexplain what he planned to do & have me sign a consent form. So having 30 minutes to chat was fun... he's a really friendly guy who was able to establish an excellentrapport with Joshua (no easy feat) & I appreciated his demonstrations & explanations.Surgery is scheduled for 7:30am (July 7th), which means we have to check in to the hospital at 6:00am. Dr. Bliss said it'll take him about 45 minutes to an hour to dothe muscle biopsy & at least an hour to do the port, so with the time needed to get IV access for anesthesia and other "fiddle faddle" (as he put it), he estimatessurgery being around 2.5 to 3 hours, which isn't bad at all (as compared to some of his other surgeries).Afterward, Adam, Joshua & I went to one of the local malls & bought Cinnabons to snack on (love 'em!). We took a walk around the downtown area, too, which was nicebecause the weather was beautiful.I'm going to go snuggle with my little guy now & watch some tv so he can relax. He's pretty wiped out after so much activity.Sign My Guestbook Read TributesSunday, June 28, 2009 3:23 PM, PDTJoshua, Adam & I will leave for Portland early tomorrow morning in order to make Joshua's noon appointment with his general surgeon.On Tuesday, he'll have brain & spine MRIs and CINEs. I'll get a copy of the films immediately afterward, but I'll have to wait until Thursday to get the radiologist'sreport. Still, I'll look 'em over to see if there is anything glaringly obvious (like another CSF leak ~ those are easy to see).On Wednesday, Joshua will see his neurologist in the morning & his urologist in the afternoon. Then, on Thursday, he'll see the neurosurgeon. Then we'll come homefor a few days before going back up for his surgery on July 7th (which, coincidentally, is the day Sarah had her first chiari decompression in 2004 ~ I never imaginedI'd be back at the hospital 5 years later with a different kid having surgery on the same day).I'll be posting daily updates here versus my regular blog, so if you want to keep up on what's going on with Joshua, this will be the site to come to. :)Thanks for checking in!Sign My Guestbook Read TributesFriday, June 19, 2009 11:41 PM, PDTWhen facing the unknown in my life, I always feel more than a little trepidation. Next to my raging insecurity, having something happening and notknowing what is causing it triggers the most apprehension, worry & stress for me. As such, I have had a knot in my stomach for the past month that isgrowing as each week goes by with no answer for what is afflicting Joshua.I don't yet have a diagnosis to share, but I know that whatever "it" is, "it" isn't good.In the "good news" column, I can list Joshua's current stable state. He's doing as well as he can & is generally cheerful, which is something I am happyabout and am enjoying. I am focusing on the positives as much as I am able, but a few days ago, we saw the ped & the PT (and had our previous PT ~my friend from Australia ~ there for the session, as well), which had me focusing on the negatives and reminded me (as if I could forget) that this stableperiod isn't going to last forever.My little guy has more generalized muscle weakness throughout his body. I thought perhaps I was imagining it, but both PTs confirmed that it's true. It'sevident in his calves & booty & upper arms & neck. He'll be getting a headrest for his wheelchair. He's got loss of sensation that is progressing up his legs& is at mid-thigh level now. I can't say he's lost complete sensation to pain, pressure, hot and/or cold because his sensation appears spotty ~ someplaces he feels pain while other places are numb to pain. Same with pressure ~ some places he reacts and others he does not. But overall, the level ofsensation has changed from where it used to be and is slowly but steadily creeping upward. His gait has changed and he walks much slower than he usedto, as well.I don't have any answers (yet) for why this is happening. The progressive loss of sensation is a definite sign of a neurological problem not related to spinabifida. The increasing muscle weakness is also concerning. A hypothesis other than mitochondrial disease was brought up and discussed extensively, onethat would tie together a lot of Joshua's symptoms, but I keep telling myself that there is no reason to worry about something that may not be theproblem. And actually, the hypothetical condition (congenital muscular dystrophy) would be a better diagnosis to receive than mito or no diagnosis at all(because no diagnosis wouldn't mean there isn't a problem; it would mean they haven't yet figured out a test to diagnose the problem, so we'd be facinga complete unknown for what the future held for Joshua & that would be VERY hard for me to accept).That's what I keep telling myself as I wait for Joshua to have the muscle biopsy & get the results, which will hopefully give us a definitive answer, yet Iam struggling to make my brain shut up about the topic. If the hypothesis turns out to be factual, then Joshua would have a condition that wouldn't killhim (yea!) or substantially affect his cognitive function (yea!), but it would mean progressive loss of function & all that goes with it (yuck).Technically, I guess it doesn't matter if the hypothesis is correct or not. We already know Joshua has progressive loss of function. We've been watchinghim decline slowly over the past 2 years. Even when he's in a stable period and doing well, it's never as good as it used to be. And it is that fact that ismaking me sad. I look at him today and know that, barring a miracle, this is as good as he's gonna get. And if I don't stop myself, I find myselfwondering if "6 months from now, will he still be able to _______?" (insert random skill/ability). I wonder if whatever is causing this progressive loss offunction is going to shorten his lifespan. I know, that's morbid, but I still think it.The unknown has always been hard for me to accept, and it's even harder for me when the unknown involves my child's future. I realize that anythingcould happen to anyone ~ you can get hit by a car walking across the street ~ but with Joshua, I know that something IS going to happen, which makesit more difficult (for me, anyhow) to blithely go on with life.I know I need to get a grip & figure out a way to cope better, and since Joshua's situation isn't improving overall, it appears I'll be provided with ampleopportunity to do so. I'm hoping that once we have a diagnosis ~ or once we know that we can't GET a diagnosis until genetics testing comes up withsomething new to check for ~ I'll feel some measure of peace because at least the journey of searching for an answer will be complete. Knowing whatwe're dealing with would at least allow me to somewhat prepare for the future, whereas right now, with not having any idea, I don't know what we mayor may not need & that makes planning pretty difficult.Oh ~ also, there's been one change to our itinerary for the upcoming Portland trip. On the 30th, instead of it being a free day, Joshua will be havingbrain & spine MRIs. Afterward, if he's feeling up to it, I would still like to take him to the Portland zoo, but I'll have to see how he's doing. It'll be a verybusy 4 days up there, then we'll come home for 3 days before going back up for 3 more days. Hopefully, though, once we're done with the doctorappointments & MRIs and surgery, we'll be able to have a long chunk of time where things aren't "medicalized" for Joshua and he can just have time tobe a little boy.Sign My Guestbook Read TributesTuesday, June 2, 2009 10:31 PM, PDTToday I took Joshua to get his wheelchair adjusted. Even though he's only gained (and lost and gained and lost and gained) 1 pound since December, he's grown enoughto make the chair not fit right. The wheelchair guy lowered the footplates and changed the angle of them, then moved the seat back a bit, so now the chair fitsJoshua nicely again. It took all of 10 minutes, for which our insurance company will be billed $76.80. How's that for ridiculous??? I wish I made $7.68 per minute ofmy time!After the wheelchair was taken care of, we headed to the orthotist's office to pick up a duplicate of the back brace that Joshua's wearing (still 23 hours each day).I'm ridiculously happy to have a second brace so that I can have one to wash & one for Joshua to wear. The orthotist's wife is incredible, too ~ she ordered the brace& then customized it by taking out the support bars, cutting a dip for Joshua's mickey button, sewing around the edging to keep it from fraying and adding velcro sothat we can get it tight enough. So much extra work to go through for my little guy and it was something she OFFERED... I never had to ask for a thing becauseCarolyn thought of everything we'd need & took care of it from the get-go. She & Craig are such blessings to me (and Joshua)!We also got our itinerary for our next 2 Portland trips all set up today. Adam, Joshua & I will leave the morning of the 29th and see Dr. Bliss (surgeon) at noon thatday. The 30th will be a free day & we may go to the zoo or something fun like that. Then Joshua will see Dr. Lashley (urologist) & Dr. Huffman (neurologist) on July1st and Dr. Wehby (neurosurgeon) on July 2nd. We'll drive home the afternoon of the 2nd. THEN we'll turn around and go back to Portland on July 6th for hissurgeries on the 7th. Dr. Bliss will be doing the muscle biopsy of Joshua's thigh & placing a port-a-cath in his chest, both of which are supposed to be outpatientprocedures, but for everyone's comfort & peace of mind, we'll stay at the Ronald McDonald House overnight before heading home on the 8th. Of the 2 previousoutpatient procedures he's had, he got to go home the same day one time and the other one landed him in the hospital for 10 days, so this one could go either way. I'mhoping that he makes it 2 for 3 on the "going home the same day" side. :-)While I'm not looking forward to Joshua having more surgery (albeit minor procedures in the big scheme of things), I feel better knowing we have everything set up.He's tolerating just 3 ounce feeds now and nope, I have no idea what the reason is behind the change. I did put in a call to Jenny (Dr. Wehby's P.A.) yesterday, askingher if we should scan Joshua to see if he's still leaking CSF or what, but I haven't heard back from her yet. She might want to scan him while we're up in Portlandsince the MRI place there can evaluate flow of CSF and the MRI place in Medford can't... we'll see.To end this update on a good note, let me tell you that Joshua is continuing to show interest in eating regular food. He doesn't necessarily eat much, but when otherpeople are eating, he's definitely taking note of it and often asks to join in and have some, too. :-)Sign My Guestbook Read TributesSunday, May 31, 2009 11:13 PM, PDTJust a short update.... Joshua is still having frequent (ie: daily) backaches, occasional headaches, and today he started vomiting most of what heeats/drinks yet again.I'm hoping to hear from the surgeon's office tomorrow regarding when they can get Joshua scheduled to come in for his pre-op clinic appointment &surgery to do the muscle biopsy & place the port. With the onset of throwing up & increased back/head pain, I am hopeful that he can get the port soonin case he ends up needing IV fluids.I wonder if it's possible that he's got high ICP (pseudotumor cerebri) & that is what causes him to blow holes in his dural patch.... or prevents it fromhealing properly. I wonder if the back pain is due to tethering or if he's still got CSF leaking & reforming the pseudomeningocele yet again. No way toknow for sure without doing another MRI, which may end up getting ordered once I chat with the pediatrician & neurosurgeon to let them know what'sgoing on.There's rarely a boring moment with my Joshua!Sign My Guestbook Read TributesThursday, May 28, 2009 7:59 PM, PDTWhile the results of Joshua's CGH test were "essentially normal" (Dr. A's words), there was one aberration that may or maynot be significant.He has an abnormal NPHP1 gene situated at chromosome 2q13. He is not a homozygous carrier (he doesn't have 2 abnormalcopies of the NPHP1 gene) ~ he's a compound heterozygous carrier (1 abnormal copy, 1 normal copy with an unidentifiedabnormality ~ don't ask; I don't understand how a copy can be considered normal while having an abnormality, either).While being heterozygous would typically mean that he would be asymptomatic for any of the conditions in which a mutationin the NPHP1 gene is implicated (because most autosomal recessive disorders require 2 abnormal copies of a gene toproduce the disease/syndrome in a person), it's possible for a heterozygous carrier of NPHP1 to develop symptoms of somepotentially-serious conditions.Dr. A is going to do more research to ascertain what might be in Joshua's future as far as this gene mutation is concerned.He was very clear in saying that it could very well end up being an "incidental finding" and that Joshua may not have anysymptomatic issues as a result of having this gene mutation. He also said that he does not believe that this mutation is theunderlying cause of Joshua's problems, so we need to continue searching for answers.He said we need to do the muscle biopsy right away. He was disappointed because he had thought the bloodwork wouldreveal something else (the gene deletion for a specific condition he had thought Joshua had) & he said he hadn't actuallybelieved we'd need to do the muscle biopsy. But that is the next step & Dr. A told me to call Dr. B (the surgeon) to get thebiopsy & placement of the port-a-cath scheduled ASAP.I did call Dr. B's office & got the ball rolling there. The woman I spoke with was very nice & said she would try to get Joshuascheduled for his clinic visit (required prior to surgery) & surgery during the same trip to Portland that we've got planned forJune 30-July 2 (thus far). She's going to call me back when she has the dates/times set up.Don't ask me how I feel about all of this because I don't know yet. I had thought that learning of a genemutation/duplication/deletion would be a relief because it would point us to a reason for Joshua's problems. I hadn't evenconsidered the possibility that we could find out he has a gene mutation that may cause problems for him but is not theunderlying cause of his overall decline. I shouldn't be surprised, though, since Joshua so rarely does anything by the book.Right now, I would have to say I'm flabbergasted that one child could be afflicted with so many seemingly-unrelatedproblems & I'm sad that there are more issues coming down the pike for my little Joshie-bear. Yes, I trust that God is incontrol & He has a plan, but I certainly can't pretend to have any understanding of what He's got in mind. I'll just keepputting one foot in front of the other & doing what needs to be done because hey, what other choice is there?*** And in other, related news, Joshua is complaining of back pain & headaches again. He requested pain medicationtonight because he was so uncomfortable. I'm not surprised by this starting up again, but I *am* saddened by it. ***Sign My Guestbook Read TributesWednesday, May 27, 2009 10:38 PM, PDTI called the geneticist's office this afternoon & was told that the results came back yesterday (!!) but that I would have to wait for Dr. A to call me to discuss thereport. The nurse that I spoke with told me they (she and another nurse) had sent multiple messages to the doctor, telling him Joshua's results were on his desk &asking him to call, but since he hadn't called me, she would transfer me to his voicemail and let me leave a message.So I left a message for him, giving him my home phone & cell numbers (as if he doesn't already have them). Told him I looked forward to hearing from him.Annnnnd.... he never called.So he's had the results for 2 days now, yet can't be bothered to pick up the phone to give me the results. And his nurses who are capable of giving test results overthe phone (I know they are because I was told so yesterday) won't tell me what the report says.I am going to have a very difficult time being gracious when this doctor finally does decide to call. I'm wondering if he has a legitimate reason for not calling or ifhe's one of those doctors who has a God complex & gets royally ticked by a parent who dares to challenge his decisions and/or gets irritated with them when theyscrew up (such as when they don't numb up your child's arm before attempting to do a biopsy and you call them on it).As of tonight, I'm voting for "God complex."I'm going to assume that the results of the CGH are normal until I hear otherwise. What that doctor doesn't seem to realize is that he doesn't have me tied up inknots with worry. I have been praying that something shows up on the CGH because that would mean we have an answer for what is causing Joshua's problems &that would be a good thing. Like I've said before (probably half a dozen times, at least), NOT having a diagnosis doesn't change anything for Joshua. Getting aconcrete diagnosis would be great. If we get a definitive answer, we might have some treatment options & perhaps some idea of how things are going to unfold in thefuture. Not knowing what's going on isn't going to make things not happen, so I'd much rather KNOW. So, basically, it doesn't matter what he tells me. If theresults are normal, I will ask what we ruled out & move on to the next step. If the results show a microdeletion or duplication of something, I'll ask what theimplications are for that & then move on to the next step. What irritates me is feeling like he's playing some game here.I'm going to ask him why it took him so long to call. I not going to give him a pass on his behavior unless there is some genuinely legitimate excuse because it's justwrong to not call a parent when you've got the test results sitting on your desk & the parents know it. And if he has no reason for not calling, I'll write a letter to thehospital director about Dr. A's unprofessional behavior. I'm so not impressed by specialists anymore. After all, when it comes right down to it, they're working forme.... I pay for their services, so I have every right to expect them to do their jobs.Sign My Guestbook Read TributesTuesday, May 26, 2009 6:46 PM, PDTI spoke with Dr. Anadiotis' nurse this morning & she said she didn't know whether or not Joshua's bloodwork results had come in yet, but she'd check & get back tome. It's now almost 5pm & she hasn't called, so I'm assuming the results weren't in.Perhaps it's snotty of me to say this, but oh well..... a phone call would have been nice!I wish medical personnel would not tell a parent that they'll call back if they aren't going to actually, you know, call. Yeah, I realize that doctors & nurses are busy andblah blah blah.... I don't care. I've been waiting nervously all day long to hear from the nurse because she said she'd call me later today.Ugh & sigh.Maybe I'll hear something tomorrow. It sucks when no one else (medical personnel) cares half as much as I do about finding out what is going on with my kid.Sign My Guestbook Read TributesSaturday, May 23, 2009 3:01 AM, PDTToday was such a fun day that I have to share it with you all (I added a couple pictures to the photo album, too).The kids & I went to the boat races & carnival today down by the river. It was the first time some of them had been to a carnival & we all had such agood time!David, Sarah & Joshua were not into any kind of adventurous rides ~ the twins stuck to the "kiddie" rides like the carousel & little airplanes. Joshua onlywent down the big slide, but he did it twice & LOVED it! Big smiles & lots of laughing from him as he came down. I got the first trip down the slide withAdam (his first carnival experience) on video. He was totally cute!Emily, Isaac & my teenagers were totally into the bigger, faster rides. I thought Isaac would be scared by the flipping, spinning, fast-moving rides (he's5), but he couldn't get enough!It was a beautiful day today (80 degrees) & the park where the carnival was set up had lots of trees, so there was plenty of shade and thus, we all werewarm but comfortable. The kids ate curly fries after watching the guy behind the counter put a spinning potato through a slicer using a power drill(multiple potatoes were used for each order)... that's what made the fries curly. The 10 & under set were all impressed by watching that little show! LOLAfter the carnival, we went to Charley's work for dinner & had a good time there, as well. The food was great & even Joshua ate (half a chicken strip & 1french fry)!Today was one of those blissfully NORMAL days where we got to be a regular family enjoying regular activities & having fun together. Truly, it was abalm to my heart to be able to spend the day with my kids, laughing & just having a good time with them. We don't get enough times like this, whichmakes me appreciate how wonderful this perfect Friday truly was. :-)Sign My Guestbook Read TributesThursday, May 21, 2009 11:21 PM, PDTThis is a question for all the other spina bifida moms out there.How do you prevent a child with spotty-to-no sensation in their legs who falls a lot from tearing themselves up during the summer when they're wearing shorts and areoutside (aside from carrying him every time he's not in the house)?Joshua was walking to the van when he fell on a stepping stone, scraping one knee & gouging the other. No one realized he'd gotten hurt until he was put in his carseat& we saw the blood. I got him cleaned up & bandaged, but it left me wondering how other parents of kids with spina bifida handle this kind of situation.Joshua used to tear up his feet until he started wearing AFOs, and I know to keep his feet covered if he goes swimming to prevent them from getting torn up by thebottom of a pool. But what about his knees? How do I prevent injuries there? I want to do what I can to keep Joshua from getting hurt, especially since he likes totear scabs off, which makes healing take an exceptionally long time.Any advice?Sign My Guestbook Read TributesThursday, May 21, 2009 2:35 AM, PDTHi all!I moved Joshua's page for privacy reasons. It was easier than dealing with a password and having to try to discern who I should give it to in the event someoneemailed and asked for it.Since caringbridge pages are not searchable ~ that is, one has to know the name of the page in order to reach it ~ and I don't plan on posting the URL on any publicforum, I think I will be able to keep out the people I don't want reading about Joshua. I respectfully request that you do not post the link to this page on any publicforum, as well. I don't mind if you share it with friends via email, but I would appreciate it not being put up on a messageboard somewhere in cyberspace.I suppose it shouldn't matter to me who is reading about my son, but it does, and there are a handful of people who I don't believe have any reason to be here. It'smy hope that with the change of URL, they won't have any way of finding this site.Time will tell, I suppose. :-) But in the meantime, here we are. Thanks for coming & for supporting Joshua & the rest of my family (oh, and me, too)!In Joshua news, he is in a good place right now. Sleeping well, engaging in more social eating (ie: he expresses an interest in eating when he sees his siblings doing so) &being generally happy. His energy level is all right, but not nearly what would be considered "typical" for a 3 year old. He's lost the ability to do so many things thathe could do as recently as 4 months ago, so that is a bit of a bitter pill to swallow, but I am trying to focus on all the things he still can do in a "glass half-full"mentality. Oh ~ he did re-learn to type "mouse" (the little kids' password for their user) so he can log himself in on the computer, which I thought was prettyimpressive. He's also beginning to show signs of having a sense of humor in his speech, which is both cute & fun.I'm expecting to hear the results of the bloodwork he had done on the 12th sometime next week. I'll post about it when I hear from the doctor.Overall, Joshua's as good as he's been in a long time, so we all are enjoying doing all the normal family stuff that we can while it lasts. :-)Sign My Guestbook Read TributesTuesday, May 12, 2009 10:51 PM, PDTToday Adam, Joshua & I went to Portland. The drive up & back was great ~ I made exceptionally good time on the way home, especially (it helps that everyone was haulingat 75mph & I didn't see one cop the entire way, hehehe). While we were there, however, was anything but fun.Okay, to be fair, the appointment with the neurosurgeon was not bad. Joshua has a small "squishy" area at the top of his incision that could indicate a developingpseudomeningocele (again) from a CSF leak that hasn't healed yet, so the doctor wants to see him again at the beginning of July to re-evaluate how things look then. Sheagain joked that "Joshua scars everywhere except where we WANT him to," since we need his little body to scar between the dura & the dural patch in order to seal off theleaks completely & he has trouble complying with that, yet he has no problem forming huge amounts of scar tissue in places we'd like him to NOT scar (like his brain & spinalcord). Aside from that, she did a cursory exam to check Joshua's reflexes (still has none in his legs/feet) and then we sat & chatted for a bit about how he is doing, what thegeneticist had discussed, how I was doing & what her perspective on all of this is. She thinks it's definitely time to put in central access, as well, so everyone is in agreementthat that step needs to be taken.... which makes it easier for me to go along with the plan despite wishing that it wasn't necessary.After the visit with neurosurgery, we headed across the hospital & to the 2nd floor to see the geneticist. The nurse applied EMLA ~ a numbing cream ~ to several places onJoshua's arms for potential blood draw sites & a large amount to his upper right arm for the biopsy site. Due to Joshua's intense sensory issues, having "lotion" on his skin wasa horrible experience. He hated it & was crying & asking us to rub it off. Obviously, we couldn't do that, so we put his coat on to try the "out of sight is out of mind"approach (failed dismally) and just dealt with it for 30 minutes before heading to the lab.At the lab, the technician could not find a vein, so after one poke, he asked another technician to try. It was with that first poke that we realized the EMLA hadn't numbedhis skin at all, which made me feel horrible because I had reassured Joshua that the lotion was going to make "this" (the procedure) not hurt & he had believed me. Anyway,when the 2nd technician couldn't get a vein after one try, she gave up & called in the IV specialist, who took a couple tries but was finally successful at getting the blooddrawn. By this time, Joshua was hysterically crying & begging me to take him home. It was extremely sad.Afterward, instead of being able to acquiesce to Joshua's request to go home, we had to go back to the geneticist's office for the biopsy. When they put us in the room towait for the doctor, Joshua started saying, "I want go home now," over & over as he burrowed his head into my shoulder. When Dr. A walked in, Joshua started crying andstating his desire to leave more loudly. He was inconsolable. He didn't know what was going to happen, but he knew he didn't want to be a part of it, which washeartbreaking.Dr. A & I discussed the muscle biopsy & his desire to schedule it at the same time that Dr. B puts in the port-a-cath. We're going to wait until after the blood test resultscome back (about 2 weeks) to schedule the dual surgeries. The same surgeon (Dr. B ~ the guy who did Joshua's emergency abdominal surgery in Sept, 2007) can do bothprocedures, so that will be convenient. There is a possibility of trying to schedule it the first week in July since Joshua already has appointments scheduled with theneurologist & urologist on July 1st & the neurosurgeon on July 2nd. If we could do the surgeries on July 2nd or 3rd, that would be good for my family since we'd get so manythings done in one Portland trip. I'd also like to get the port & muscle biopsy done before summer is over so that it doesn't interfere with schooling the older kids. We'll seeif the surgeon's schedule works out to my liking or not!When it was time to start the biopsy, I laid Joshua on his left side on the exam table & climbed on the table, myself, so that I could straddle his hips/legs to keep his bodystill while holding his left arm out of Dr. A's way. I kept my other hand on Joshua's right elbow & the nurse handed Dr. A what he needed. I mentioned that the EMLA hadn'tworked downstairs at the lab & Dr. A said he was sure Joshua's arm was numb. He scratched the area & Joshua said, "Ow!" but the geneticist said he was sure that was just areaction... that Joshua hadn't actually felt pain. I wasn't as certain & I said so.Dr. A swabbed betadine on Joshua's upper arm while he began begging us to stop, telling us "I no want do this!" "Mom! Stop!" "I want go home!" To say this washeartwrenching would not be an exaggeration. After using alcohol to wipe off the betadine, Dr. A took the scalpel (looked like a metal circle at the end of a pencil) & as hemoved to apply it to my son's skin, he told me, "This is where he'll feel pressure." I asked, "Aren't you going to numb his arm first?" He told me it wasn't necessary becausethe EMLA had him numb enough. I had this sense of wanting to yell, "Did ya not hear me? I said the cream didn't work!" However, all I said was, "Well, I hope he's actuallynumb." As the doctor pressed the scalpel to Joshua's arm, his scream of pain made it quite apparent that he was NOT numb. I glared at Dr. A & said, "He's feeling that!" Hestopped, pulled the scalpel out & agreed, "I believe he is." Grrrr!!!!!So there we are, with Joshua hysterical from hurting & being held down by his mom, Dr. A applying gauze to the bleeding wound & the nurse staring, not knowing what todo. The geneticist said we could apply more EMLA, but we'd have to wait another 40 minutes or so for him to get numb. I asked if he had any lidocaine & he asked the nursefor some, only to be told she hadn't brought any in (duh). He had an exasperated expression on his face as he asked her to please go quickly and get some. About 5 minuteswent by with me still holding a miserably screaming & retching Joshua down & the doctor still applying pressure to the partially-completed biopsy while we waited for thenurse to get her butt back in the room with the lidocaine. When she finally did arrive, she was empty-handed as she informed us, "We have to wait on pharmacy to deliverthe lido." Dr. A told her to go find SOMETHING that could be used to numb this child's arm NOW and the nurse suddenly remembered that there was some cold spray thatthey used upstairs to as a topical anesthetic. She scurried out of the room to fetch said spray and returned a few minutes later. The arm was sprayed liberally & then Dr. Aagain applied the scalpel to Joshua's skin. This time, however, though he continued to cry, he did not scream in pain, so I don't think it hurt him.Afterward, he did not want to keep the bandage on his arm, but by shoving his arms in his coat & zipping him up tight, he couldn't reach it and I was able to thwart hisefforts to tear the covering off. Adam (who had stayed in the waiting room with his earphones on) and I told Joshua that we could now go home and that helped to calm himsomewhat, though he continued to do the post-big-cry-hiccups & shudders for another few minutes.Within 5 minutes of getting in the van, Joshua was crying that he had an owie & asking Adam and me to "take it away." I had brought his tylenol with codeine, so I gave hima dose, but it took another 45 minutes of him crying & Adam holding his hand and offering comfort before Joshua's pain was under control. This absolutely infuriated me.What kind of doctor doesn't numb up a kid's skin before cutting into it? And with no lidocaine on-board, why wouldn't Dr. A have given Joshua some kind of pain medicine orat least told me to give him some? Yeah, I used my brain and thought to bring the T3 we had left over from his last surgery up to Portland with us, but what if I hadn't? Mylittle guy could have been hurting for hours simply because the geneticist didn't give it a moment's consideration. VERY disappointing experience and a very frustrating one,as well. I'll give him (Dr. A) some credit, though ~ he did profusely apologize for what had happened & said he felt terrible about it. He apologized to Joshua, as well, but Idon't think my little guy wanted to hear it.Sooooo..... big sigh........ it was no fun at all, but at least it's over with & we're safely back home. Steps 1 & 2 for this journey are done, which is a relief, and answers fromthose steps will be forthcoming in approximately 2 weeks (blood) & 7-9 weeks (biopsy). Joshua is doing fine now, without any complaints of arm pain at all, and since he iscurrently occupied with playing computer games beside Adam, I think I'm going to go take a hot bath to help me unwind from the very long day I had!Sign My Guestbook Read TributesFriday, May 8, 2009 10:51 PM, PDTOn Tuesday, Joshua & I will make our way back up to Portland for a quick follow-up visit with his neurosurgeon & then a longer, more-involved appointment with thegeneticist. He'll undergo a skin punch biopsy & a blood draw, and when we leave, we should have an idea when we'll be taking Joshua to the operating room to do the openmuscle biopsy on his thigh & place a port-a-cath in his chest so he'll have long-term central access.The geneticist's nurse called to chat today about Joshua ~ specifically, to educate me about the punch biopsy & to discuss the muscle biopsy. The punch biopsy willhopefully be a "no big deal" thing, though it doesn't sound like any fun to me. We'll go in at 1:15pm for the nurse to apply EMLA (numbing cream) to the biopsy site (upperarm) & to both antecubital areas (inside of elbows). After 30 minutes, we'll head to the lab to do the blood draw for the CGH (Comparative Genomic Hybridization test),which will hopefully be painless for Joshua regardless of how many sticks it takes to get the necessary amount of blood. I thought the nurse was awesome to offer EMLAprior to Joshua getting labwork. She told me she used to work in pediatric oncology & she doesn't see any reason to make a child hurt when there is something she can do totry to avoid it. I think I love Dr. A's nurse already! :-)After the labwork is done, we'll head back to the geneticist's office & Joshua will be taken in for his procedure. While being held down, he will have local anestheticinjected into his upper arm. This will hopefully be a painless procedure ~ if the EMLA works well ~ and then Dr. A will use a small circular scalpel to core out a very smallpiece of his skin & underlying tissue. The tiny chunk will be raised up from the surface of his arm & the underside of the tissue cut, then the piece will be sent off to the labdownstairs, where sheets of skin cells will be grown & ultimately shipped to the east coast, where another lab will determine what collagenopathy Joshua has ~ ie: whatconnective tissue disorder. After removing the biopsy sample, Dr. A will close the wound with a steri-strip & apply antibiotic cream, and then we'll be done. The risks of theprocedure are muscle or nerve damage or bleeding, but those really shouldn't be any problem whatsoever.We'll stay the night in Portland at the Ronald McDonald House & then head home on Wednesday morning.The nurse asked me to tell her about Joshua ~ what his clinical course has been thus far. I tried to summarize the past 2+ years as succinctly as possible, telling her thatJoshua generally has 4-8 weeks of being "good" & stable before beginning another decline, where he gets symptomatic & ultimately winds up having another surgery. I toldher how he doesn't tolerate feeds very well & has gone from an all-time high of 8 ounces per feed to just 5 ounces currently. I said that any stress seems to result in Joshua'sdigestive tract shutting down. She interjected that she'd noticed his hospitalizations were prolonged & that GI troubles were responsible for many of those extra days. Iagreed, adding that he can be ready to go home from a surgical perspective 4-5 days post-operatively, but he'll be vomiting up the half-ounce of formula that we try to feedhim over the course of an hour, so they can't let Joshua go home until he again tolerates a minimum amount of fluids. I told the nurse about his waning energy, about hislack of enthusiasm for most activities outside of sedentary ones, and his increasing need for sleep. I told her that though he has peaks & valleys, his overall trend has been adownward one for quite awhile & no one really knows why. She asked me if he tends to have trouble "bouncing back" after surgery & I said he does. I went onto add that he no longer seems to get back to the level he was at, either. She clarified, "So if he was at a 9 before becoming symptomatic & ultimatelyhaving surgery, after he recovers, he may only get to an 8 and that becomes his new good place?" I told her that was exactly right. He used to get backto the same level he was, but now he doesn't. Then she said, "And I bet it takes him longer & longer each time to recover, too." I agreed with her that itdoes.The nurse asked me if Dr. A had told me why he wanted to do a muscle biopsy. I answered that my understanding was Dr. A wanted to evaluate Joshuafor mitochondrial disease. She said she was glad I knew that, because listening to what I was saying when I described Joshua's clinical history had herthinking that was very likely the direction we were heading insofar as a diagnosis. She went on to say that while no parent wants to hear their child hasmito, at least we'd know and we wouldn't have to keep searching for answers, and that knowing would be helpful, not only to my family, but to all of thespecialists on Joshua's medical team. I told her that I knew of a family online whose son has mitochondrial disease & I have found many similaritiesbetween their son when he was in his early stages of the disease & where Joshua is now. She said that she wasn't surprised to hear that.Soooo... obviously the nurse doesn't know anything for sure just from reading a portion of Joshua's chart & talking to me more in-depth, nor do I, but I'mglad she called to talk & that she gave me an inkling of what the geneticist may be thinking with regards to Joshua. It'll take several months before weget any specific answers, but at least we're moving in that direction & that's something to hold onto. I am combating my natural impatience by continuallyreminding myself that whatever is going on with Joshua is not a secret to God. He knows exactly how He made Joshua & He will reveal the 'mysteries' ofmy son's muscles & collagen in His time. Also, even if we are blessed with a specific diagnosis (the odds are much higher that we'll get a general sense ofthe problem without pinpointing anything), there may be nothing we can do about it from a treatment perspective, so I don't see any reason to getworked up about the process we're going through with the geneticist. Yes, I feel nervous about the biopsies, but only because I don't like subjecting mychild to something that is going to cause him pain. Other than that, I feel confident that pursuing this path is the right thing to do and I'm glad we'll getthings underway 4 days from now.Sign My Guestbook Read TributesSaturday, May 2, 2009 10:50 PM, PDTI'm feeling kind of sad. Joshua is doing all right, but "all right" is not what it used to be.The muscle function in his right leg has gotten worse, with increased weakening of his abductor (the muscle that pulls your leg outward). When he walksnow, he drops his right hip & the resulting gait is lopsided.His energy level has not gotten better. He doesn't walk much around the house during the day & he doesn't want to go outside to play at all. Today Iinvited him to come out with Daddy & me and Joshua said, "No. I tired." All he does is sit around for the day & take 1-2 naps. It saddens me to see himso uninterested & unwilling to play outside with his siblings when just a few months ago, he would have been out there on the swingset or the slide or thedome with them.He is only tolerating 5 ounce feeds, down from 6. We did not even get him back up to 8 ounces per feed before he started having problems again. He isvomiting more again and when he gets going, he can't stop retching until I give him zofran. Why is this happening? I don't really know.Every day, he says his back hurts. Most days, he asks for medicine to help ease the pain. I don't know if he still has an active CSF leak despite Dr. W'sbest effort to seal it off. I don't know if all the screaming he did when we were holding him down for over an hour, trying to get a new IV into him whenhe was just 10 days post-op, tore part of his dura (again). He could still have a CSF leak and I wouldn't know it. Will Dr. W want to MRI Joshua? Noclue. Would I like her to? Yeah, actually, I would. I'd like to know. I like specific answers versus theorizing.And speaking of specific answers, we head back to Portland on the 12th to have a follow-up with the neurosurgeon & to see the geneticist, who willperform the skin biopsy that will hopefully diagnose the specific connective tissue disorder Joshua has & also draw blood to look for specific microdeletionson whichever chromosomes Dr. A is suspicious of. I will be discussing the safety of placing a port-a-cath for central access (it would be surgicallyimplanted in Joshua's chest, near his heart) & if Dr. A feels it would not present any danger to Joshua ~~ if he doesn't think Joshua would form a largewad of scar tissue around the port & thus encroach upon his heart ~~ then I'll find out when we can get that surgery scheduled. If possible, I'd like towait until the beginning of July when I know we'll be back in Portland to see the neurologist, urologist, neurosurgeon & geneticist yet again. It would bemore convenient to do it after seeing all of the doctors in clinic than to have to make a completely separate trip.I would really appreciate prayer for this upcoming trip. I want everyone to be on the same page regarding Joshua.... I want every doctor we see to beseeking specific answers to the questions that have plagued my son since he was 8 months old. I want the neurosurgeon to not blow off Joshua'scontinuing back pain by telling me, "There's nothing we can do." I don't want to be told we have to go back to the pain management specialist. I don'twant to have my 3 year old living with chronic pain! I want the skin biopsy to go smoothly. I want there to be a definitive diagnosis at the end of the 9week wait. I also ask you to join me in praying that Dr. A will say putting in the port should be safe. If this is going to be Joshua's life ~ one full ofprocedures & surgeries & hospitalizations ~ then I want to make it as free from trauma as possible, and having permanent central access would help withthat goal. If Joshua didn't have to endure painful blood draws & IVs (and their multiple attempts each time), I think some of the anxiety associated withthe hospital would lessen for him. At least, I like to think it would.I am hoping Dr. A will schedule the muscle biopsy for sooner than later, as well. So many symptoms that Joshua exhibits point to mitochondrial disease& I would like to know one way or the other whether this is what is causing his overall decline over time. I realize that if we found out Joshua does havemito, nothing will change because it's incurable, but there would be a certain measure of peace in having a diagnosis & knowing the enemy's name. Rightnow I feel like I battle each crisis as it arises, but I don't have any understanding of why these problems keep happening & that gets discouraging. If Iknew what was causing Joshua's issues, even though there may be no earthly way to fix them, I'd at least know what I was fighting against. Like I saidbefore, I do better with specifics, so please, if you would, join me in praying that the journey to getting specific answers for Joshua will be short & thatwe'll soon know what is going on with him.Thanks.Sign My Guestbook Read TributesSunday, April 26, 2009 10:49 PM, PDTHappy news ~ Joshua is tolerating 6 ounce bolus feeds at a rate of 400mls/hr. He is no longer requiring any continuous feeds at night, as he eats & drinks enough (incombination with his bolus feeds) to meet his daily fluid requirement. Woo hoo!!! He gets weighed tomorrow at the ped's & I am hoping he's made good progresstoward regaining the weight he'd lost in the hospital.With the increase in formula & oral intake, he's again needing help with his bowels, so I've restarted his program of colace in the morning & a mini-enema at night. Idon't see it as a setback ~ I was happy to get a few days' break from the routine & am not surprised that he's needing the assistance again. His ability to go on hisown was nice while it lasted!Sign My Guestbook Read TributesFriday, April 24, 2009 10:49 PM, PDTI uploaded a couple pictures from the last 2 days of this most-recent hospitalization. Check the "photo" section to see 'em.Joshua is tolerating 5.5 ounce feeds bolused at 300ml/hr. I'm going to give him 6 ounces tonight for his last feed & see how he does. He is also eating food (he justpolished off a small scoop of vanilla ice cream) & has pooped on his own (without the aid of his nightly enema) yesteday & today. VERY good news!!!His walking is still "off", but I'm attributing that to the fact that he hasn't walked much at all in the past few weeks. His energy level is very low; he doesn't evenwalk much around the house, and he opted to not go to the park with the other kids yesterday, preferring to sit at home, instead. And his OCD issues (wanting thingsto be done twice & needing to control who does what for him) are unpleasant, but I am remaining hopeful that it'll get better the further out we get from surgery (andwe are trying to not feed into it, as well).Overall, however, he's definitely in what our family would term a "good period" & I'm happy for that & hopeful we'll get to stay here for a long time!Sign My Guestbook Read TributesThursday, April 23, 2009 10:48 PM, PDTWe're home! Yippeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Joshua tolerated two 4-ounce feeds yesterday (pumped in at 300ml/hr, so it takes just under 30 minutes to get him fed) and he drank some milk and heate a tiny bit of noodles! And this morning, he wanted his tube feed and while Megan was getting it ready for him, he pulled his shirt up & opened hismickey button for her! Sooooo... I am feeling greatly encouraged on the feeding situation, that we'll be able to get him off continuous feeds & back ontoboluses within the next month. Praise God for that!!!I don't really have words to express how relieved & happy I am to be home. These past 2+ weeks have been a long haul for everyone in the family & Iam so tired ~ physically & mentally. I'm looking forward to having some time to recuperate before the next round.I am exceedingly thankful that Joshua is happy & that we are once again being blessed by his laughter, smiles & hugs. It's been so long since he's beencontent that being in this sphere of "good" feels even better than I remember. Most definitely, this little boy has taught me to appreciate the happy timeswhen they're here!I did receive a lovely parting gift this time.... a case of pinkeye. Joy of joys! How I managed to get infected, I do know not know, as I washed my handsall the dang time I was there & I don't touch my face/eyes a lot, but infected I am. Thankfully, the pediatrician took pity on me & wrote out a script forantibiotic eyedrops so I could come home and (hopefully) not pass this to my kids. Now I am relegated to wearing my glasses for a week & throwing outmy contacts & eye makeup, which is annoying, but it could be worse ~ I could have no new contacts to wear once my week's sentence is up & that wouldbe horrifying! LOLSign My Guestbook Read TributesTuesday, April 21, 2009 10:47 PM, PDTWhen we moved at the beginning of the month, Charley & I decided we weren't going to subscribe to cable television anymore. I don't watch a lot of tv,but I said I was really going to miss American Idol, Law & Order, and the Biggest Loser, as those are the 3 shows I do follow. I must have mentioned myfeelings in front of Joshua, because he has done a great job of ensuring that I get to watch my shows for the past 3 Tuesdays by being in the hospital!What a considerate little guy, huh? Still, I think I'd rather be home watching the shows on !It looks like I'll get my wish soon.Today, Joshua has been on continuous full-strength formula and hasn't thrown up once. In fact, he hasn't thrown up in the past 48 hours. He had a reallygood day today.The pediatricians are ready to discharge Joshua tomorrow (if he doesn't have any vomiting tonight). While I'm happy to know we'll be going home, I'mnot thrilled that he's getting discharged on 24 hour feeds. How we're going to manage a 3 year old who is hooked up to a feeding pump all day long isbeyond me. We can keep the pump & feeding bag on our IV pole or put it in a specially-made backpack.Joshua won't wear the backpack because of his sensory issues & the fact that it weighs about 5 pounds with the pump & half a bag of formula, which is1/6 his body weight. That is the equivalent of a 150lb person wearing a 25lb backpack for every waking moment of their day. How pleasant is that? Also,Joshua falls quite often when walking; I can't imagine him being capable of wearing the backpack & not winding up falling & breaking the pump, and I'massuming our insurance company wouldn't be amenable to replacing the pump on a regular basis. This means that we will have to have someone withJoshua at all times so we can move the pump around with him wherever he wants to go. How realistic does that sound?I spoke with the ped about my concerns; his response was that I could work on getting Joshua going on bolus feeds once we got home. Hmmm... thissort of sounds like Portland telling me that I could work on getting Joshua to take more fluids once I got home just before they removed his IVs anddischarged him without waiting an additional day or two to ensure that he would tolerate not having the extra fluids anymore. I mentioned that to thepediatrician (who is not our beloved Dr. S, by the way.... he's covering for her right now) and his reply was, "Well, if he isn't taking decent bolus feeds of7 or 8 ounces, then you can give him fluid at night to make sure he stays hydrated." All right, that is reasonable & logical. However, giving him fluids atnight means I have to get up 2-3 times to cath him during the night &, well, as selfish as it sounds, I don't want to have to be setting my alarm to get upand cath Joshua through the night.So... it's good that we'll get out of here, as Joshua is feeling much better, spent some time in his wheelchair today & was happy to go around the pediatricfloor, but I'm not very happy with the feeding arrangements. Hopefully I'll be able to get him moved over to bolus feeds & he will be able to tolerate theincreases in volume (he hasn't tolerated more than 2.5 ounces yet and would need to take 7-8 ounce feeds and he is still getting just 50ml ~ under 2ounces ~ per hour via the continuous feeds) AND rate (the fastest bolus speed we got to during this hospitalization has been 60ml/hr. Pre-surgery, hisboluses were given at 999ml/hr ~ quite a significant difference). I was told by the ped that our Portland GI said it is possible that continuous feeds will beJoshua's new normal, but I am praying hard that she is wrong. Besides the whole logistics nightmare of moving the pump/feeding bag around with himwherever he goes, he has diarrhea on the continuous feeds because he can't digest food 24 hours per day, so a lot of it runs right through him (any timehe tightens his stomach muscles, such as when he sits up or rolls over, a small amount of poop gets squeezed out) and I wind up doing 12-18 diaperchanges each day, which is going to make achieving social continence (the spina bifida version of being potty trained ~~ the process by which a boweland bladder program are established to keep a person dry & unsoiled so they aren't embarrassed by accidents) darn near impossible.So.... good news & not-so-great news, but at least we get to go home! Hopefully, we won't end up coming back any time soon!Sign My Guestbook Read TributesMonday, April 20, 2009 10:46 PM, PDTThank you for the supportive & encouraging comments to my post below. How uplifting to come here & know others care about what is going on in my liferight now! Truly, it means a lot to me to know there are so many out in cyberspace praying for Joshua & the rest of my family. Thanks to you all.Joshua is still without IV access, so we're using his g-tube to give him 50ml/hr of half-pedialyte, half-formula. When the pediatrician got here this morning& read the orders that the on-call ped had written last night regarding having the neonatologist put in the PICC, he disagreed with that treatment plan &came to discuss the situation with me. In a nutshell, he (the ped) wanted to have Joshua go without IV access by getting continuous half-strength feedsto see if maybe possibly he can manage without having IV fluids. He also wanted to talk to the GI in Portland to ascertain what she wants to be donebefore he puts in the PICC. At this time, he thinks it would be better to keep Joshua here than to send him back to Portland, but he made it clear that thatwould change if Joshua needed something done that they couldn't do here at RVMC.I am comfortable with this plan because Dr. H made it clear that if Joshua vomits even once or if he is unable to tolerate feeds or can't advance them inthe next few days to be taking more volume, he'll get the PICC. We can get the line in right away, if necessary, and they aren't going to let Joshua crash& burn ~ as Dr. H told me, "If he needs it, he gets it, no questions," so I am able to relax a bit & trust that this is an okay step to try.Dr. H came by again at 2pm to check on how Joshua is doing (he was sleeping) & to let me know that he had not yet heard from GI (typical ~ it's hard toget ahold of Dr. F, unfortunately), but said he'd come by again after he talks to her to let me know what she wants to do. He came back again thisevening to let me know that our Portland GI is perplexed by Joshua's condition this go-round, as well, and she agreed with Dr. H's plan to try and getJoshua well enough to discharge from the hospital without having to bring him up to Portland to do more-radical treatment (like putting in a j-tube... afeeding tube that goes straight into the intestines and bypasses the stomach altogether).I am relieved that today is pretty much a day of rest. Joshua had 3 episodes of night terrors last night where he'd wake up screaming, hysterical, wailing,"I don't want to do this!" "I want you to stop!" (which is what he kept crying last night while we were trying to get the IV in). The most heartbreakingmoment for me was after I got Joshua calmed down from a night terror & he stopped crying, looked at me & moaned, "You hurt me!" before falling backto sleep. It hit me just how traumatized he had been by the events of the night & I couldn't stop crying for quite awhile.SighhhhhAnyhow, as of right now (almost 10pm), Joshua is resting comfortably & tolerating the half pedialyte/half formula continuous feeds. This isn't a surprisesince he's tolerated the same volume & rate earlier in this hospitalization. Tomorrow he'll be moved once more (third attempt this hospitalization) to fullstrengthformula on continuous feeds. I expect him to do just fine on it, as well. It'll be when we increase his volume and/or move to bolus feeds thatwill be the real test of whether he's getting better or not. In the meantime, however, I'll be happy with every little move forward, and today we got a fewof those when Joshua sat up unassisted for over 30 minutes and was interested in playing with toys. He colored (scribbled, LOL) and was generally more"perky" than he's been in the past week, too, so that's another good sign.We were blessed by visits from more local friends & that helped the day move by faster, which was nice. :-)Sign My Guestbook Read TributesMonday, April 20, 2009 10:46 PM, PDTJoshua blew his IV. Trying to get a new one was a nightmare. He blew 5 veins in 3 limbs before the NICU nurses (who had been called in after the firstvein blew) gave up. Everyone was in tears ~ the nurses in the room, Adam, me, Joshua (he was hysterical), the nurse in the hallway who paced back &forth with Heather while they waited.The decision was made to run 50ml/hr of pedialyte through Joshua's g-tube tonight to keep him somewhat hydrated and then to have the neonatologistsedate Joshua & insert a PICC line tomorrow when there's a full staff of people in the hospital.I don't know whether we'll be transferred to Portland or whether the doctors will choose to conference call & treat down here. The final decision will bemade tomorrow. The things I vented about this morning notwithstanding, there are many reasons for us to stay here ~ local friends who offer theirsupport & practical help (like doing laundry for us), the kids can come visit, etc. ~ so I think I'll be okay with whatever gets decided as long as thePortland doctors are amenable to our staying down here & as long as they are running the show (albeit long distance). I spoke with a doctor about theissues I had (see my last post) & after he talked with the nurses, everyone who walked into Joshua's room was washing their hands & using handsanitizer & alcohol wipes for everything. We have a fantastic set of nurses tonight (thank you, Lord) who have been beyond understanding & kind, andthat goes a long way toward erasing the ignorant behavior of the other nurses we've had.I have hit a wall. This is all too much. Holding Joshua down & listening to him scream in pain for more than an hour as he got stuck over & over, dealingwith the uncertainty of his future, the cumulative stress of the past two years' worth of surgeries (and the multiple chiari/tethered cord surgeries of thetwins) .... I have gotten to where I don't feel I can't take any more. I know that when I'm weak, He is strong, which is a good thing since I am feelingexceptionally puny.Please pray for Adam, who is so very sad about his baby brother, and for Megan, who is shouldering a heavy load as she plays the role of "mom" in myabsence. Pray for Emily, David, Sarah & Isaac as they miss Joshua & me & worry that we may never come home again. David, in particular, is convincedthat Joshua is going to die. Pray for Charley, who is under tremendous stress at work right now and must continue to perform his job regardless of whattrials he is facing in his home life. I can't imagine trying to go to work all day with the way things are with Joshua... I know this is a very difficult time formy husband as he worries about his little boy & his wife, yet is powerless to do anything because he has to be at work. And most of all, please pray forJoshua, that he would not hurt, that he would make progress in the right direction in tolerating feeds, & that tomorrow's procedure to insert the PICC linewould go smoothly & that the neonatologist would be able to locate a usable vein (he has only one limb to choose from since the veins in his other 3 limbshave been blown tonight by IV placement attempts or in the past few days by blood draws). If you pray for me, I'd ask for continued strength, wisdom &clarity of mind, and peace. My heart has been slowly breaking since we came home from Portland (processing all the geneticist told me & what it allmeans) and this ongoing hospitalization is making the cracks grow ever bigger. I want so desperately for Joshua to be okay, to stabilize & to get a goodperiod.... I want that for my family & for Charley & myself. I honestly do not know how much more we can take.P.S. Rachel, Anneliese, Tammy & Alisha, thank you SO MUCH for coming to visit today. The refreshment our time together provided gave me thestrength to get through the events of the night. Carolyn, thank you so much for dinner last night & for washing our clothes & Joshua's pukey blankets. Iam so thankful for your friendship and so incredibly grateful to you all for taking the time to come see us at the hospital. :-)Sign My Guestbook Read TributesSunday, April 19, 2009 10:45 PM, PDTI've been awake for the most part since 1am, so this may be a little rambly.I believe we are in a subpar medical facility & I am going to try to get Joshua transferred to Portland if things do not improve by tomorrow (I'm waitingonly because it's Sunday & the ped on-call here is not a member of our usual ped's group ~ he doesn't know Joshua, has never met him or me, andisn't willing to transfer without discussing it with our primary care doctor). I'm sorry if this post offends those friends who live in the same city as me &use this hospital for care, but the care Joshua has received here has been a huge disappointment as compared to the standard of care given at LegacyEmanuel.Why do I think it's subpar?1. The nurses don't wash their hands or use hand sanitizer upon entering/leaving the room. I guess the fact that one of the kids here has gastroenteritis& suspected rotovirus means nothing to them. Disease transmission, anyone?2. Only one nurse has used an alcohol wipe to clean the port to Joshua's IV prior to injecting medication into his IV (I didn't realize they weren't doingthis, as he gets meds during the night and I've been sleeping. Heather, however, has watched them every night because she's basically an insomniac &has been awake to observe & this morning she asked me, "Are they supposed to wipe that thing with alcohol before putting the meds in?" because shesaw one nurse do it and the others not, so she wasn't sure of protocol). Sure, let's make my kid septic by introducing germs directly into his bloodstream.Why not?3. No one is on the same page. The doctor tells me one thing & each nurse has her own interpretation of what the doctor's orders mean, so they're tryingto do things differently than what I was told to do (and even the nurses can't come to an agreement on things & thus each one is doing things differentlyfrom the others), and the resulting confusion is extremely frustrating.4. No one knows what to do to get Joshua digesting food properly again &, I am assuming because it's the weekend, no one is on the horn calling aroundto find someone who DOES know what to do. That is frustrating since we've been here since Tuesday and by Thursday, it was apparent to me (& I tried totell every medical professional I saw) that Joshua was not improving, so there was time to call up the specialists and get some ideas for treatment beforethe weekend hit.What is the definition of insanity? Doing the same thing over & over but expecting different results? That is what I feel is going on here. When Joshuavomits, we back him down to 45mls pumped in over an hour and then increase each feed by 15mls as he tolerates it. He gets to 2 ounces (60mls) andhas trouble, so we're going up/down/up/down/up/down with no overall improvement. Why am I the only person who thinks we need to do somethingdifferent here?5. HIPPA violations. Heather, who doesn't know anything about medical protocol (that is not an insult at all; just a statement of fact), asked the CNA ifthe kid who was admitted with gastroenteritis had rotovirus or not (she & I overheard the nurses & doctor talking about the child, LOUDLY, at 4:20am).The CNA said that the test results hadn't come back yet, but they were pretty sure he did. Okay, so patient privacy means nothing here. Good to know. Iexplained to Heather that the CNA should have responded with something along the lines of, "I'm sorry; I can't share that information with you due topatient privacy law." That is what any inquiring person at Legacy Emanuel (our regular hospital in Portland) would have been told. Oh ~ Heather justcame in from getting us some water & she told me that when she walked by the nurses' desk, the CNA announced, "That test came back negative forrotovirus." That is just wrong for her to be sharing that information, not to mention illegal.6. Sarcasm & ineptitude by the nurses. Case in point: at 5am, our dingbat nurse came in. She looks my way & says, "Oh, you're still awake." I respond,"Yep. It's been pretty loud out there." (Which, by the way, is the reason I was not sleeping. The noise level was ridiculous ~ you'd think nightshift peoplewould realize that most people in the hospital try to sleep at night) She answered, "Yeah, it's been a busy night." I bit my cheek at that point, because Iknow darn well she and the CNA assisting her have been sitting on their butts at the nurses' station, chatting about everything except patients, for 75%of the evening! Our room is directly across from where they sit, so I know darn well they hadn't been busy. They're just loud.Anyway, she went on to say, "Dr. C & I were talking about your son," (I wonder if she knows his name, as she did not say it once the entire shiftyesterday or today) "Did you overhear what our plan was?" I told her, "No," and she retorts with a sarcastic edge to her voice, "No, you don't want tohear the plan?" I did sigh in exasperation at that point as I told her, "No, I didn't hear the plan. Yes, of course I want to hear it." I shouldn't havebothered; the plan is the same one we've had for the past several days.As for ineptitude, let's see.... they can't come in and do blood pressure, temperature & O2 saturation level all at once. They come in and do one thing,leave the room (I'm presuming to write the result down), come back and do the next thing & then leave the room again. It's ridiculous. Vitals checksshouldn't take 10 minutes & nurses usually are pretty adept at doing them without fully waking a sleeping child. And they don't think to bring in anynecessary medications to administer at the same time they're doing vitals ~ again, a vast difference from the typical protocol in Portland (whereorganization seems to be a much-higher priority).The nurse needed to put 45mls of formula in the bag for Joshua's feed. I offered to do it and was told she could handle it (okay... I was just trying tohelp, but hey, go for it!). So she looks in the fridge for any opened formula and, after finding none, has to be directed to where the formula is by Heather(it's been in the same place out in the open the entire time we've been here & she was Joshua's nurse yesterday, as well, so she really ought toremember) goes to the case of formula that is sitting on Joshua's bedside table, takes out a can and asks me, "Is this the same stuff we've been using?"Uh.... YES! So then she fumbles around at the sink for no less than FIVE MINUTES, trying to measure out the proper amount of formula. I am not kidding,nor am I exaggerating. Then she gets distracted & leaves the room without a word. I waited for a couple minutes before deciding this was ridiculous andgot out of bed to pick up a 2-ounce syringe, pour in 45mls of formula and dump it into the bag. I had the formula primed through the tubing & wasgetting ready to hook it into Joshua's g-tube when the nurse walks in and goes to the sink to continue working on her task (without washing her handsfirst, of course). I told her, "I already got the formula," as I finished hooking Joshua up, started the pump & climbed back into bed. The nurse was all,"Oh... you are giving him straight formula?" Yeah, since that's what the GI said to do. Ugh. Besides that, even if we needed to dilute the formula, itdoesn't take 8 minutes to put 22.5mls of formula in a syringe & 22.5mls of pedialyte before dumping it all into the bag. For someone who was braggingabout how she's worked here long enough to interpret a doctor's orders her own way, she was grossly incompetent. Right now, I'm looking at the littlescanner thingy that the nurses have to use to scan a kiddo's wristband before administering any medication, IV fluid or the like.... Nurse Brilliance left itsitting on the fold-up cot.SighhhhhhhhhI'd feel more comfortable in Portland because they practice handwashing/use of hand sanitizer & all of Joshua's specialists are there, so maybe someonecould come up with a treatment plan that would work to get Joshua out of the hospital sooner than later. Down here, they keep saying that Joshua iscomplex & they're openly admitting they don't know what to do to help him, but no one is actively trying to contact someone who might have a clue &that doesn't make sense to me. As more days go by, I get increasingly sleep-deprived & frustrated that Joshua is getting worse over time rather thanbetter. I miss my kids & I miss my husband. I don't mind being in the hospital when Joshua is making forward progress (even if it's interspersed with afew setbacks), but this going backward stuff (which Joshua has done for the 5 days we've been here) is not working & needs to be fixed.Update: I spoke with the on-call pediatrician & he is just as perplexed as everyone else. His suggestion for the day was to stay at 2 ounce feeds sincethat seems to be the max Joshua can tolerate without problem & then to space the feeds out to every 5 hours rather than every 4. So that's what we'lldo today & tonight. Dr. J's thought is that Joshua's gut function is extremely compromised for whatever reason, so maybe if we give it extra time todigest the little bits we're feeding Joshua, he'll slowly get better. I told him I was willing to try just about anything to get Joshua to turn the proverbialcorner & move toward getting closer to getting out of the hospital, so we're giving this new regimen a try.(And hey, Tammy & Rachel, we would love to have you visit! Drop by any time!!!)Sign My Guestbook Read TributesSaturday, April 18, 2009 10:44 PM, PDTJoshua vomited the 2.5 ounce feed (that took 75 minutes to drip into his belly) and brought up some of his previous feed (from 4 hours ago) for good measure, as well.I called the ped to inform him that my plan was not working & that I did not know what to do. He said he'd call Portland to see if he could get in touch with Joshua'sGI & find out what she would recommend.He asked me if this had ever happened to Joshua before ~ where he couldn't digest food & hold anything down. I told him September, 2007. He asked what hadworked to get Joshua over the hump & I answered, "Brain surgery #2."So... yeah. No clue here.Update: the GI doesn't appear to have a clue, either. This is the plan... he's not getting erythromycin for the next 24 hours (that's the medication he takes toincrease gut motility) and we're going to feed him 1.5 ounces over 60 minutes every 4 hours to see if he'll tolerate that. What happens after 24 hours? I don't knowyet. I don't think anyone does.Sign My Guestbook Read TributesSaturday, April 18, 2009 10:44 PM, PDTNot much has changed in the past 24 hours. Joshua has received & then vomited feeds. I've been told there is obviously something amiss with his autonomic nervous system& I had to bite my cheek to stop myself from sarcastically responding, "Gee, ya THINK?"The pediatricians taking care of Joshua are awesome. The nurses here at the hospital? Not so much. The one we had yesterday kept coming up with completely-stupid-inlight-of-Joshua's-complexity suggestions for why he was throwing up. Saying, "Could it be the tylenol with codeine since codeine can be very upsetting to children'sstomachs? Have you ever tried giving him some other kind of pain medicine?" Valid theory except that Joshua doesn't get T3 regularly and he has not vomited right aftergetting it. Oops. And yeah, he's had other painkillers aside from T3. Or "Oh, his mickey button was 2ml of water short so you had to refill it? Could that be contributing to hisvomiting?" Uh.... no. No, it couldn't. Sigh. I wanted so badly to tell her to please go read Joshua's chart before she came back to talk to me again. My patience for stupidityright now is exceptionally low, and a registered nurse should have more of a clue than the average person walking on the street with regards to medical stuff. I did tell herthat while I understood the desire to come up with an explanation for why Joshua throws up so much post-operatively, it's not anything "simple" or "easy". What I didn't addwas that we have a team of 10 specialists (and numerous other medical professionals) who have been trying to figure Joshua out for the past 2+ years, so if it weresomething as easy as tylenol with codeine being the problem, I'm sure we would have come up with that a long time ago.It wasn't that the nurse tried to come up with an explanation for the problem. That, I didn't mind at all. It was her attitude about it ~ as though I'm a complete moron &obviously the doctors taking care of my child are, also, because why haven't any of us realized what she figured out within 5 minutes of meeting my son? Yeah, sweetie, if itwere that easy, I wouldn't be here right now! Duh.Something gross but funny to share.... last night, my friend, Heather, spent the night at the hospital and when we were getting ready for bed, I laid down next to Joshuaand said, "You know, I'm going to roll him on his side (I was moving him as I said this) just in case he decides to..." and right then, perfectly on cue, Joshua threw up a hugequantity of formula all over the bed & floor, but not on me! I looked at Heather & finished my sentence, saying, "do that. Yeah. That right there." LOL Okay, perhaps no oneelse will find that to be funny, but after being in 2 hospitals for almost 2 weeks total, what strikes me as humorous is, admittedly, a bit twisted. After we got him cleanedup, he went right to sleep again & had a pretty decent night. I turned his continuous feeds off, thus horrifying our nurse who told me, "But we have doctor's orders!" Iresponded that I'd take the heat from the doctor in the morning and refused to let her turn the machine back on.When the doctor came in this morning, he said that today's plan was to do whatever the heck I thought was best since I know Joshua better than anyone and their plans (thepediatricians') weren't working. I told him I didn't know if my plan (to do bolus feeds, administered extremely slowly, in tiny amounts, increasing by 1/2-ounce with eachsuccessful feed) would work, either, but he told me it was worth trying something different today, so that's what we're doing.Joshua still hasn't perked up much, though we're getting a couple short spurts of happy times with him where he smiles & interacts with us.No idea how many days we'll be here. Joshua will have to be meeting minimum daily fluid requirements before he'll get discharged, which means he'll need to be tolerating6-8 ounce bolus feeds every 4 hours. If he has no more setbacks, he will hit 6 ounce feeds at 4pm tomorrow night, so I'm going to guess that the earliest we'll be out of herewill be Monday.... but again, I can't say for sure.Sign My Guestbook Read TributesFriday, April 17, 2009 10:42 PM, PDTAfter 24 hours of IV fluids, Joshua tolerated 24 hours of 50% formula + 50% pedialyte on a continuous feed at a rate of 50ml/hr (30ml = 1 ounce). Then he did great with fullstrengthformula on a continuous feed at the same 50ml/hr rate for 8 hours. So then, bolstered by his progress, we waited 2 hours and then gave a 2 ounce feed at a rate of60ml/hr ~ so it took 30 minutes to drip the 2 ounces into his belly. All seemed okay for about an hour afterward, but about an hour later, Joshua woke up retching. He didn'tactually vomit, but he did a lot of hard swallowing and gagging. The decision was made to hold feeds for 2 hours & then resume continuous feeds like he'd had the previousnight.That was a bad decision.He vomited a copious amount of formula at midnight & then again just before 7am. He then began vomiting every 10-15 minutes until he was finally given zofran to breakthe cycle.Would you believe one of the nurses here wanted to resume his feeds 30 minutes later? I told her no way; we're giving his stomach a rest.For whatever reason, it doesn't appear that Joshua can make the switch between bolus feeds & continuous feeds. I also don't think his body is capable of digesting food 24hours a day without a break, even if it's a small amount.He had his daily enema & nothing came out, which tells me that either he's completely empty or he's completely backed up. As such, I'm requesting a KUB x-ray when thepediatrician comes to check on Joshua this morning. If he's empty, that's great (though unlikely, considering that he went 5 days without his bowel routine when we were inPortland because the neurosurgeon didn't want him straining and possibly popping the stitches she had just put in), but if he's backed up, he'll need some help getting thatcleaned out. It's important to evaluate, though, since constipation can contribute to vomiting when there's internal pressure on the stomach.Either way, we're still here & there is no discharge date on the immediate horizon.Gotta fly ~ Joshua needs me.Sign My Guestbook Read TributesWednesday, April 15, 2009 10:41 PM, PDTWe may be here awhile. While illness has been ruled out, Joshua remains a sick little boy.IV fluids are being turned down a little so that we can give a continuous feed of pedialyte through his g-tube (1.5 ounces per hour) & evaluate how he'stolerating that. If he begins vomiting again, the pedialyte will be turned down a little & the IV fluids turned up a bit more... we'll do this "balancing act"until we hit the right combination for what Joshua can handle.After 24 hours of tolerating pedialyte, we will begin to slowly introduce formula through the g-tube & will advance feeds as Joshua can tolerate them.He won't be discharged until he is stable. For Joshua, this means being able to take adequate feeds without the aid of IV fluids for maintaining hydration.Our ped said this morning it could be a long haul, but no one is willing to let Joshua go home until he is stable & is going to be able to get a period ofthings being "good".We have friends coming to help out for the duration. God surely blesses us and provides for our every need in every circumstance.Sign My Guestbook Read TributesWednesday, April 15, 2009 12:40 AM, PDTWe're back in the hospital. At 2pm, Joshua woke up and vomited all of the pedialyte he'd gotten via his slow g-tube continuous feed. Then, when I cathed him at 4pm & gotbarely any urine out, I put another call in to the ped's office (we'd been keeping in contact throughout the day) and she said it was time to bring him in.I don't know how long we'll be here, but I do know there is a huge sense of frustration among the medical personnel here that Joshua was discharged from Portland withtheir full knowledge that he was not capable of taking in enough fluids to maintain adequate hydration. I share their frustration; in fact, I'm feeling fairly irritated about it.I have decided that since the Portland team of doctors are in agreement that whatever is going on with Joshua is not fixable & we can expect to continue to have repeatedhospital stays and surgeries, I am going to push for things to be done in such a way that we minimize trauma to Joshua as much as possible. The pediatrician is in completeagreement, and to that end, says that Joshua should have a port implanted in his chest so that we have long-term painless central access for IVs, blood draws, meds andfluid boluses. Her only concern is whether or not it would be safe for Joshua to have one due to his propensity for overproducing scar tissue, so she wants to discuss it withthe geneticist before contacting the general surgeon (the guy who did Joshua's emergency abdominal surgery in September, 2007) to get things set up. I'm in favor of havingcentral access, too, for a multitude of reasons, not least of which is being able to avoid hospitalizations like this one where we come solely to get Joshua rehydrated. If hehad a port, I could give Joshua IV fluids at home & thus keep him out of the hospital, which would reduce the stress that he & the rest of my family endures at times likethis.Sign My Guestbook Read TributesTuesday, April 14, 2009 10:40 PM, PDTAfter Joshua spent the night & early morning vomiting, I remembered that I still had Zofran in the house, so I gave some to him & he hasn't thrown upsince then. He's getting one ounce of Pedialyte per hour through his g-tube and has thus far held it down. His pediatrician is aware of the situation andwill be seeing my little guy tomorrow to check how he's doing.The discussion of giving him a PICC line so he can be bolused with IV fluids at home when necessary was brought up again. I have to admit, I'd like themto just do it already versus talking about it. It is an enormous stressor to have to worry every day about whether or not Joshua has gotten enoughcalories & fluids, so to have the ability to bolus him with IV fluids, especially when he's having a frequent-vomit day, would be a relief of sorts. The topichas been tossed around on & off for the past 1.5 years, so it'd be nice if someone in charge would make a decision and be done with it.I'm not getting a lot done today since Joshua wants me to lay beside him when he's awake. This is all so typical for his post-op behavior, except typicallywe're in the hospital when it's happening. I have to say, it'd be a lot easier to do this routine in the hospital, where laying around doing nothing butvegging in front of the t.v. is the norm. Trying to keep Joshua happy while schooling & taking care of the other kids & the household stuff (laundry,especially) is a heckuva lot more challenging!Oops, he's waking up again. Gotta go!P.S. Our next trip north will be May 4th-6th, when he'll see the neurosurgeon, neurologist & geneticist (for surgery follow-up, bloodwork & punch biopsy).Sign My Guestbook Read TributesMonday, April 13, 2009 10:39 PM, PDTJoshua had a bad day today.He had more pain again ~ tylenol with codeine helped ~ and he isn't holding down feeds as of this evening. He vomited afull 7 ounce feed all over me.... completely undigested.... 4 HOURS after having it pumped in.My concern is that the dietician told me Joshua needs to get 6 cans of formula per day (48 ounces) & I don't have a clue howto get that much into him (continuous feeds overnight almost always result in vomiting, which defeats the purpose & resultsin grouchy, sleep-deprived child & mom). They discharged him taking 28 ounces, so they knew he wouldn't be gettingenough. They also kept him on IV fluids until 5 minutes before we walked out of the hospital since, as the nurses told me,Joshua needed the extra fluids because he wasn't getting enough via g-tube/mouth.That begs the question, if they knew he needed extra fluids, then why was he discharged without a plan to get him the fluidhe needs and isn't capable of ingesting via his tube or by mouth? Yeah, it's what I'm asking, myself, but don't know theanswer to. All anyone told me was that they didn't want to discharge Joshua with a PICC line & IV fluids at home becauseit's a hassle to deal with.Know what? Cleaning up vomit and doing extra laundry is a hassle, too, as is having to stress about the fact that you knowyour kid isn't getting enough fluid/calories each day.I'm not certain this is the culprit, but I DO know that something was very different in Joshua's recovery this go-round, andthe only thing that I can point to is the fact that they kept him on continuous IV fluids rather than disconnecting him fromthe extra boluses 24 hours after surgery like they typically do. That was great while in the hospital, but isn't so great nowthat we're home & I've got him vomiting the way he typically does after surgery. It's manageable when it happens in thehospital because they've got meds to help with the nausea and THEY do the laundry. Here at home? It's the pits.Anyhow, he sees his pediatrician in a couple of days, so I'll get her perspective/opinion on this. In the meantime, I feelbadly for my little guy. After his good day yesterday, I was feeling pretty hopeful about things, but today reminds me thatwe're not far enough past this latest 'hump' to fully relax yet.Sign My Guestbook Read TributesSaturday, April 11, 2009 10:38 PM, PDTWe're home! :-)We got home this evening, just in time to join the little kids in dying eggs for Easter. With 3/4 of an acre & lots of treesmaking up our new yard, there will be lots of places to hide (and LOSE) eggs tomorrow. The mere prospect of an egg hunthas my youngest 4 beside themselves with excitement.Joshua is doing great now that we're home. He's chatting, walking around (a bit gingerly, but that's to be expected while hisback heals) and not having a lot of pain. He's been happy ever since we got home because he got to play some computergames again! LOL Adam & I are happy to be home, as well, and we are both looking forward to sleeping in our own bedstonight.I've uploaded some pictures, including one of Joshua's most-recent incision, for those who want to see it.Thanks so much for your prayers this go-round. It was nice to be gone for only a week this time. :-)Sign My Guestbook Read TributesFriday, April 10, 2009 10:37 PM, PDTWe had an interesting visit with the geneticist today. I doubt anyone wants to hear the blow-by-blow conversation, so I'll skip the mundane & go straight to the plan:1. Joshua will have a skin punch biopsy (from his upper arm) to evaluate for collagen defects (connective tissue problems). It will take approximately 3 weeks to grow thesheets of skin necessary for the tests & then another 4-6 weeks to get the results back after the skin sheets are sent to the appropriate lab. Dr. A said he doesn't believeJoshua has Ehlers Danlos, but he knows there is a collagenopathy (collagen disorder) amongst me & my children for sure (he examined Adam & me along with Joshua), so hedoesn't expect the biopsy to come back negative. He said if it does ~ if Joshua doesn't have a collagen defect, then he (geneticist) is going to have a really difficult timeexplaining to Dr. W (neurosurgeon) how it's possible for my child to have a defect in his dura but not the rest of his connective tissue.2. On the same day that he has the skin punch biopsy, Joshua will have blood drawn for a Comparative Genomic Hybridization test. Dr. A did not specify why he wants thistest done. He made it clear that he does have a few conditions he is going to evaluate Joshua for, but he also said he thinks it is cruel to tell a parent that he suspects theirchild has a serious condition before he knows for sure that it's true. So... on one hand, I respect that perspective, but on the other, I'm desperately curious to know what heis thinking might be genetically wrong with my child. Doesn't matter; I'll have to wait. If everything on the CGH comes back normal, I do plan to ask Dr. A what conditions hehad been looking for, though, just to satisfy my curiosity.3. Joshua will have a full-scale sensory test, whereby the geneticist & neurologist will work together to assess exactly where Joshua has sensation to pain, pressure &temperature in his lower extremeties. The reason for this? I'm not entirely certain. All Dr. A told me was that it was important to do it & that there is a condition that linksGI dysfunction similar to what Joshua exhibits with impaired sense of smell (something else he suspects Joshua has that will be definitively established or refuted viatesting) & progressing sensory loss in the lower extremeties. Bonus points to anyone who can tell me the name of that particular condition because again, he wouldn't tellme what it was, and Google University isn't helping me to figure it out.4. Joshua will have a muscle biopsy to evaluate for mitochondrial disease. His lack of energy, GI dysfunction, excessive sweating, and other odd/weird/random symptoms allunfortunately point to this being a real possibility (I was told). Mitochondrial disease can be severe & fatal or it can be mild & slower-progressing... it's not a diagnosis Iwould want my son labeled with.The geneticist made a point of making sure I understood that even if he's able to pinpoint a specific diagnosis or two for Joshua, it isn't going to change things for him ~ thatwe will still wind up in the hospital for surgeries on a more-frequent-than-normal basis & we'll still be dealing with the same issues because a diagnosis isn't going to lead toa cure. I assured him that I knew that. He said the same thing the neurologist told me ~ getting a diagnosis would help everyone on Joshua's medical team to understand whythings happen for him the way they do, so even though we couldn't stop it from happening, at least we'd have an explanation for it. He then went on to tell me that therewas a very real chance he would not be able to come up with a specific diagnosis at all, but he believes he'll be able to narrow the field, at least, and come up with an"umbrella" to explain Joshua's symptoms (like how PDD is an umbrella term that encompasses autism, Asperger's, PDD-NOS). I figure any help in tying everything togetherwill be a good thing.Soooooo.... we'll be racking up a lot of mileage over the next few months with the hope that one or more of the tests lead to answers that will ultimately help Joshua, andwe can officially add "geneticist" & "neurologist" to the list of specialists on my youngest's medical team (rheumatologist didn't make the cut, LOL).As for how he's doing right now? Pretty well. He is tolerating 6.5 ounce feeds & sitting at 45 degrees. He had a fever at 8:30pm, but tylenol was given & a recheck of histemperature at 10pm showed the fever was lower (though not totally gone). The IV in his left wrist is threatening to blow ~ he snapped the tubing 4 times today (don't askme how, as I don't know) and on the last disconnection, a clot formed and we almost lost the site ~ but the IV in his right foot has been flushed regularly with heparin &remains patent, so if necessary, we'll switch his fluids to the foot & go from there.Rumor on the street is that he will probably get discharged tomorrow as long as nothing changes overnight, so while I'm not packing up our stuff just yet, I'm smiling on theinside at the thought that I'll soon be home, sleeping in my own bed & enjoying a celebration of Christ's resurrection with the people I love most in the world.Sign My Guestbook Read TributesFriday, April 10, 2009 10:37 PM, PDTWe're still here. Joshua was sitting at 15 degrees yesterday & took 5 ounce feeds by the late afternoon. He got a 6 ouncefeed this morning and hasn't had any problems & we have him sitting at 20 degrees right now (and will increase his inclineas he tolerates it).The prevailing theory is that his receiving constant IV fluids is helping keep his nausea at bay. It was explained it to me andmade perfect sense. Basically, he needs 6 cans of formula per day to meet his fluid intake ~ 48 ounces ~ & since January,his intake has been about 16-20 ounces of formula & 12 ounces of fluid via mouth, so he's been in a mild state ofdehydration for months & dehydration contributes to nausea & vomiting (it's a cycle). Since he's been in the hospital & oncontinuous fluids via IV, he's not dehydrated & thus the cycle of nausea/vomiting is broken. Though they typicallydiscontinue fluids about 24 hours post-operatively, it was decided to keep Joshua on his to see if it made a difference in hisrecovery. It definitely has helped.So now the question is, how do we keep him fully hydrated once he's discharged? Like I said, he took 6 ounces this morning.We tried to give him more, but it wouldn't go in. The pump simply stopped because Joshua's stomach was too full toaccommodate more fluid. That, of course, is really weird since a 3 year old should be able to hold a lot more than 6 ounces inhis stomach (especially since he had been taking 8 ounce feeds at the end of December/beginning of January. There was asuggestion tossed out that perhaps we could give water boluses (like 4 ounce "feeds" of water through his g-tube throughoutthe day), but a nurse countered that if we use one feed time to fill his stomach with water, that will prevent him from gettinga formula feed & he needs those calories. Water should, theoretically, empy from his belly faster than formula, but we don'tactually know if it would.No one wants Joshua to come home with a PICC line & a need for fluid boluses via IV, so discussions are being had todetermine an alternate plan for hydration. We hear lots of "complex", "unusual", & "unpredictable" in these discussions, butthus far, no definitive course of action.As soon as he can sit up without incident, he'll be discharged. Historically, Joshua has gone from being sluggish & barelytolerating an incline to happily riding around in his wheelchair in the space of about 8 hours, so we expect that at somepoint, he's going to turn the proverbial corner & we'll get out of here. He had some bouts of being pretty happy last night, soI thought for sure he'd wake up bouncy & rarin' to go, but that didn't happen. He spent the entire morning flat in bed,unwilling to sit up at all and not interested in doing anything (even watching tv). It's only been in the past 15 minutes thatAdam convinced him to begin interacting with the world.The neurologist spent more time with Joshua yesterday and the rheumatologist said he believes the geneticist is going to bethe person who is able to piece together the puzzle that is my little boy. I find it extremely interesting how suddenlyeveryone is seeing the things that I've been concerned about for over a year. Things that I was repeatedly assured were"fine", "just the way Joshua is," & "nothing to worry about" are suddenly not so benign. I'm not mad about it at all ~actually, I'm relieved that the specialists are now looking into all of this stuff to try & determine how it all fits togetherbecause if we know what's causing all of his symptoms, we may have an idea how to treat him more effectively and/or havea "roadmap" for what to expect in the future. Sure, it would have been nice if the powers that be had started this process ayear ago, but I know God's timing is perfect & therefore I can rest in knowing this is part of His plan.Today, this Good Friday, I will spend time reflecting on the crucifixion of Jesus Christ and the gift that his death was to all ofmankind. I will thank God for His son & for the redemption that Jesus offered by sacrificing himself on the cross. Andbecause I *am* in the hospital and don't have unlimited time to try & compose a deep, meaningful post about what Jesus'death means for every soul on earth, I encourage you to go read what Nate wrote today. He said it better than I ever could,myself.Sign My Guestbook Read TributesWednesday, April 8, 2009 10:36 PM, PDTJoshua is about the same today, albeit with a little less grouchiness. He has slept most of the day and is pretty zoned out. He's not yet sitting up because he wasn't able totolerate being raised, but when he's laying flat, he's all right. He's even been playing with the balloons his aunt Karen sent him and he's enjoying the hershey kisses & cheesenips his aunt Heather sent his way. That's all encouraging, of course. Dr. W said to not push moving him to an upright position & that we should let him lead the way as faras what he can tolerate, so that's the current plan. We know Joshua will turn the proverbial corner eventually ~ and right now, it seems like it'll be soon ~ so everyone isfeeling optimistic about that.The neurologist came by today and spent about an hour talking to me & examining Joshua. As usual, there was a lot of information passed back & forth, but the bottom lineis that she doesn't think Joshua has a neurodegenerative disease, but she is wondering if he perhaps has a mitochondrial disorder. She wants him evaluated by rheumatologyfor connective tissue disorders (specifically Ehlers Danlos Syndrome) while we're here & genetics to determine if there is something there to latch on to, & she wants himevaluated by the neuropsychologist & developmental pediatrician to determine if he falls somewhere on the autism spectrum (that would be done on an outpatient basissometime in the future, but is not the priority at this point in time). She is concerned that Joshua has ups & downs but the general trend is in a downward direction (per theneurosurgeon's assessment). She is concerned that his energy levels are decreasing over time & that it is affecting his development. She was concerned that he had slow/lowreflexes in his upper extremeties and no reflexes whatsoever in his legs/feet. It was a bit worrisome to her that his hand-eye coordination still appears to be "off". Basically,there were several "little" things that, individually, don't seem like much, but when put together, point to a definite underlying "thing" that needs to be pinpointed, ifpossible."If possible" is the big key there. Dr. H (neurologist) was clear in explaining that we could go through all of the tests & evaluations and still not wind up with a definitivediagnosis for Joshua. She said it would be extremely helpful if we could, of course, and that it's highly possible that he'll be given multiple labels before an overlyingdiagnosis that encompasses most (or all, "if we're lucky") of the other labels is found. Bottom line? The belief is that yes, there's some condition causing Joshua's problems,but it's going to take time to figure it all out.It's all a little overwhelming (okay, a lot overwhelming), but I haven't really had time to dwell on what I was told yet. I think for the moment I am just going to wait to seewhat rheumatology & genetics have to say and then go from there. It feels like by the time we're done, Joshua will have a specialist from pretty much every major field ofstudy there is and that is kind of crazy. The neurologist summed things up today by saying, "Dr. W is right; this little boy is extremely complex. He's definitely one of a kind!"No matter who sees him, everyone is in agreement with that one sentiment!Sign My Guestbook Read TributesTuesday, April 7, 2009 7:03 PM, PDTNot a lot of new information to share... Joshua continues to experience a lot of pain, is photophobic (can't tolerate lights being on), and is generally unhappy.Neurology will be coming by tomorrow for a consult & GI is coming by tonight to evaluate the g-tube concern.Joshua has tolerated 3-ounce feeds and one 4-ounce feed, though he had some gagging & the consensus was that we should not "get cocky" by pushing too much toosoon. He is now eating a tater tot & drinking some milk from his cup, which I find encouraging.He has complained of head pain along with the back pain caused by the surgery, and unfortunately morphine doesn't seem to be helping much. Thankfully, however,Joshua has been able to nap for short periods today, so Adam & I have gotten breaks and thus been able to rest.A friend came by today with her little girl who also has spina bifida. Joshua wasn't feeling great & his nurse decided that while Jill & Emmy were visiting was theperfect time to bring her student nurse in to attempt to look at Joshua's back. The resultant screaming & crying pretty much ended our visit and convinced me tostand my ground in refusing to allow anyone else access to Joshua's back until he is not in agony when being moved.I'll update more after I talk to the neurologist tomorrow. As far as neurosurgery goes, Dr. W & Jenny have said that Joshua can begin to slowly be raised a bittomorrow ~ like 5 degrees every hour. They said he shouldn't have spinal headaches or any problem like that, but since it's Joshua, they weren't ruling out thepossibility. How reassuring is that? Not very. Hopefully it'll go better than expected.Sign My Guestbook Read TributesTuesday, April 7, 2009 9:33 AM, PDTJoshua finally settled down a bit after midnight & slept decently until 7:30am. I was awake to cath him throughout the night since he's gettingIV fluids and therefore couldn't go 12 hours without cathing... & the indwelling foley was removed at 7-ish last night at Joshua's request (okay,insistent demand is a more-accurate description).He took a 2-ounce feed last night without incident, which was encouraging. We'll give him a 3-ounce feed just as soon as I get a pump from thenursing staff. I forgot to pack the power cord for Joshua's pump & it's pretty much out of juice, so now I'll have to rely on the hospital pump.Minor aggravation, but not a big deal in the grand scheme of things.His oxygen sats have been running low because of the morphine he's getting (depresses the respiratory system), but other than that, his stats look good (bloodpressure, heart rate, etc). His pain is well-managed at this moment, so he's resting comfortably. Adam just showed up from sleeping at the Ronald McDonald House &Joshua's happy to see his big brother.Thus begins another day at Hotel Legacy Emanuel.Sign My Guestbook Read TributesMonday, April 6, 2009 10:35 PM, PDTJoshua is pretty miserable. He's got a headache and backache. Medication helps for about 30 minutes and then he'scrying/whining again.His g-tube button is exquisitely tender. If it gets touched, he cries out in pain and when Adam accidentally bumped it,Joshua screamed and then cried for about 15 minutes. I'm not sure what is going on with that, but I wonder if maybe theway they had Joshua positioned in the O.R. caused some tugging on his button (like maybe it was getting pulled) and as aresult, he's now really sore. I don't know, but I'll be asking his docs about it in the morning if things don't improveovernight.It's hard to see him hurting and so incredibly unhappy. I pray he'll start getting more relief from the pain meds & that hefeels better tomorrow ~ oh, and that he sleeps tonight so that I can, too!Sign My Guestbook Read TributesMonday, April 6, 2009 6:34 PM, PDTJoshua is resting comfortably with the assistance of fentanyl & morphine. We're keeping him pretty doped up so that he'll stay down & as motionless as possible.Thus far, this plan is working well.He threw up once, but we put the attachment tube for his mickey button on and vented his belly into a disposable diaper for a few hours and that helped (as did givinga dose of zofran).We just took the attachment tube off & closed up his mickey button & we're letting him drink a little bit to see how he does with holding fluids down. Fingers crossed& lots of prayer that he doesn't start throwing up.He is currently watching SpongeBob and is not complaining at all, so I am relaxing & enjoying this moment.As long as he's okay, I'm okay. I'm tired (5am wake-up calls don't mesh with my night owl personality), but otherwise feeling all right.Dr. W & her P.A. came in to see Joshua & we were able to chat more about her reasoning for the choices she made in the O.R. She felt the size of the 3 leaks inJoshua's dura would have skewed the results of an LP, which played into why she didn't do the procedure. I thought that if she did it & the pressure was high, itwould be an obvious sign that he has much-higher pressure when he doesn't have CSF leaking out, but perhaps I'm simpleminded for thinking it would be thatlogical/straightforward. I don't know.As for the neurology consult, I don't know if that is still planned for this hospitalization or not & I forgot to ask while the doctors were here. It's fine; it's not likewe'd do a consult in the first few hours after surgery, anyhow. I'll ask tomorrow & see what Dr. W is thinking with regards to that.Gotta go lay with my little guy again, as he's getting a bit restless.Sign My Guestbook Read TributesMonday, April 6, 2009 3:31 PM, PDTHe's out of surgery. He tolerated it well. It took longer than expected simply because there was a lot of scarring, as always.The anesthesiologist put in 2 IVs so that if one blows (the usual thing with Joshua), we'll have a backup to use. As long ashe's not here for a long time, it should be fine & he shouldn't lose both lines.Dr. W did not do the lumbar puncture to assess for pseudotumor cerebri. She said Joshua had 3 areas on the dural patchthat had not scarred over, so he was leaking from 3 areas, not just 1, and thus she feels confident that his symptoms aredue to that and not PTC.I can't say I feel as confident just because pseudotumor would explain why Joshua doesn't stay "fixed" for longer than 1-2months post-operatively. But hey, maybe she's right & he'll be okay. We'll see. Nothing much I can do about it at thispoint.He's not happy about having an IV in his left hand (he's left-handed), but hopefully he'll get used to it without too much fuss.Will update more later.Sign My Guestbook Read TributesMonday, April 6, 2009 1:28 PM, PDTThe handoff went well ~ Joshua was sleepy and whined a little, but there was no crying or screaming for Adam or me, sothat was a huge blessing.He's been in surgery for closing in on 2 hours. No word from the OR at this point, so I assume all is going well.Thanks to everyone who is praying &/or has prayed for Joshua!The picture is from pre-op ~ just before Adam handed Joshua off to the anesthesiology nurse.Sign My Guestbook Read TributesSunday, April 5, 2009 11:26 PM, PDTWe made the drive to the Ronald McDonald House without incident today and are now getting ready to go to bed so we can be up at 5am to get to the hospital.Please pray for Joshua to have a smooth handoff to the anesthesiologist tomorrow, with no tears or wailing for Adam and/or me. It breaks my heart to have to handhim off when he's distraught, so my prayer is that he will be calm, sleepy & easily distracted as the doctor wheels him to the operating room. Please pray for thesame.I'll update as often as I can throughout this hospitalization to keep you updated on how things are going.Thanks for the well-wishes & prayers for my little guy as he faces surgery #14. We (Charley, the kids & I) appreciate it a lot!Sign My Guestbook Read TributesSaturday, April 4, 2009 10:24 PM, PDTJoshua's surgery is on Monday at 7:30am. We'll be heading north on Sunday (Adam, Joshua & I).Our move went smoothly. So now we look ahead to 'the next thing' ~ Joshua's upcoming surgery in 2 days. I'm choosing to believe that we'll get excellent results thisgo-round and that Joshua is going to finally feel better for good. I think he's about due for that & I know all things are possible with God. Once again, my prayerrequest to those of you who lift Joshua up would be for safe travel to & from the hospital, relief from pain for Joshua, a successful surgery whereby no new damageoccurs, definitive answers with regards to the pseudotumor cerebri question, and an end to the medical turmoil my son has endured since he was born. I'll update fromthe hospital & let you know how he's doing.Sign My Guestbook Read TributesSaturday, March 28, 2009 10:23 PM, PDTJoshua saw the orthopedist today. Yep, on a Saturday. The Shriner's docs come south every 3 months for outreach clinic, where they evaluate how kidsare doing, make or adjust braces, check x-rays, etc. I'm thankful for outreach clinic, as it saves me the trip north to get Joshua checked out.The orthopedist was a little concerned about a few things he saw when he observed Joshua walking. Joshua had to walk 15 feet in one direction & then 15feet back. The entire time he was walking, he was whining, "Hold me, Mom! I don't know how to walk!" over & over. Dr. A, his assistant, the nurse & Iwere chuckling as we watched. The assistant said, "For not being able to walk, he fakes it pretty well!" Dr. A asked Joshua, "Why can't you walk?" and heanswered, "My legs hurt & my back hurts." That made us all stop giggling pretty quickly, and Dr. A told Joshua, "Okay, buddy, you don't have to walkanymore."Dr. A was worried about how Joshua's left leg collapses every so often while he's walking, as well as how his feet turn in but he walks on the outsideedges of he feet. He talked about the possibility of Joshua needing some intervention to get his feet placed properly while he walks, but said he (Dr. A)wants to wait until after the surgery in April to determine how much, if any, of what he's seeing could be caused by the pseudomeningocele. He'll seeJoshua again in June & if things haven't improved, my understanding is that Joshua may need some kind of orthopedic procedure on his feet/ankles. Dr. Adidn't get into specifics; rather, he just said he wants to make sure there isn't an imbalance due to muscle innervation that could be causing Joshua's feetto be positioned the way they are during walking.Truth be told, I don't know much about orthopedic stuff for spina bifida kids aside from tendon transfers or tendonotomy. I know that if there isn't properinnervation to the muscles, one side can be "stronger" than the other & thus pull bones out of alignment. But what might be in Joshua's future from anorthopedic standpoint? Not a clue! So this is something I'm not going to worry about. If he winds up needing something done to his feet or ankles, we'lldeal with it when the time comes. For now, he's got a 3-month reprieve, which means I do, too!He's gained back almost all of the weight he'd lost and is again 32 pounds, and he's now 39 inches tall. He's not throwing up anymore & he's beentolerating 5-ounce feeds (and even a couple of 6-ounce ones, too). He is willing to eat little snack-type foods like cheese nips or go-gurt & occasionallywill eat a piece of cheeseburger or a couple french fries. It is a huge relief to have him getting interested in food again and not puking it back up. I can'texplain what happened to cause that change. Dr. W and her P.A. would say there must have been a change in the CSF pressure in his brain & maybethat's true, but I would like to chalk up Joshua's improvement with regards to eating to the constant prayer he's been receiving from so many. I dobelieve it is helping! I am hopeful that after this surgery, he won't have back/leg pain anymore (he hasn't had a headache in about 4 days). It would bewonderful if the neurologist Joshua is going to be seeing while he's in the hospital decides Dr. W is off her rocker & there is no way he (J) has aneurodegenerative disorder. THAT would be the ultimate answer to prayer!About the other kids ~ Adam's blood pressure remains elevated. No one has any answers yet, but everyone involved (except Charley & me) seems to becomfortable waiting until after Joshua's surgery to pursue the next step. Charley & I are a bit apprehensive, as high blood pressure can cause damage tothe blood vessels, but since we don't call the shots, we've no choice but to wait. Hopefully, answers for Adam will be forthcoming.Isaac's echocardiogram results were normal, which was great to hear. One less thing to be concerned about definitely makes me happy!Sign My Guestbook Read TributesTuesday, March 24, 2009 10:23 PM, PDTJoshua is not wanting to walk much anymore. When we try to get him to walk to the car from the house, for example, hecries & says he can't; he doesn't know how to. He wants to use his wheels or be carried for even short distances now.Tonight, he was crawling through the house rather than walking. The skin around the scar on his back is caving in again, too.Last week, it was perfectly flat, but now he's got an obvious depression all along his lower spine. When this happened lastfall, I was told it was scar tissue attached to his skin that was pulling inward. I was surprised to see it again tonight.He complains of back pain throughout the day. He's lost sensation further up his legs ~ he fell & cut his right thigh and didn'tnotice it, and today he skinned the front of his shin & never reacted. It's hard to see increased deficits and continued loss offunction. I am praying he'll get it back post-operatively.The interesting thing is that yesterday I got a copy of the MRIs from February 20th. According to the radiologist, Joshua'sbrain MRI showed diminished CSF flow through the foramen magnum (base of the skull opening into the spinal canal), whichwould explain the chiari symptoms he's having. Dr. W said she thought Joshua had adequate flow, so I'm not sure who tobelieve. I mean, if Joshua were asymptomatic for chiari right now, I'd think the radiologist was wrong. But since he's havingdefinite chiari-type symptoms, it's easier to think that this time, Dr. W is wrong, especially since that would mean we couldtreat the problem & potentially alleviate Joshua's symptoms again. Of course, it doesn't matter what I think because I can'tforce a neurosurgeon to change her mind (though I did put a call in to her P.A. yesterday, asking about the discrepency &whether Dr. W had read the radiologist's report, and if she had, did that change her opinion at all? Unfortunately, I haven'theard back from anyone yet).The lumbar spine MRI showed the collection of CSF outside the spinal canal and under the skin, of course (thepseudomeningocele that will be drained in April), but also that the bottom of Joshua's cord is pulled down to L4-5 (it'ssupposed to be up at L1) and that there is no motion in the cord at all. So once again he's tethered, which is to be expectedin a kid with spina bifida ~ the joke I've heard multiple times is that SB kids retether before they come off the operatingtable ~ but to have zero movement in the spinal cord indicates severe tethering that is linked to symptoms like back pain,loss of sensation in the legs & increased falling ~ you know, stuff Joshua currently is experiencing. I find it insanely difficultto wrap my mind around the thought that he would be able to retether so much in just 3.5 months after surgery (as of theday he had the MRIs done, February 20th). I know Dr. W will remove scar tissue outside the dura when she operates in April,but I'm betting she is not going to remove the dural patch and attempt to remove the scar tissue inside the dura/around thenerves of the cord because it's so soon after his last detethering surgery & every time she goes in there, the risk increasesfor more permanent damage. Besides, she's going to be busy trying to patch the hole that is causing the CSF leak & doingthe lumbar puncture to assess Joshua's CSF pressure (and putting a shunt in his brain if it's high). I'm pretty sure she'll tellme we need to come up with a plan for pain management and put off doing yet another detethering until something seriousforces the issue, instead. I'm fine with not doing more surgery ~ it's not like I enjoy putting my 3 year old through theprocess repeatedly ~ but I want him to not hurt. Physical deficits are not a big deal (to me ~ it's all about perspectivenowadays), but daily pain that gets worse over time? That has to go. There must be something we can do to give Joshuarelief for longer than 4-8 weeks. I just pray we stumble upon the answer soon because this cycle of him getting just 1-2months of being "good" before becoming symptomatic again is very draining/stressful, not only on him & me, but all of theother kids & Charley, too.Through all of this, God has been quite gracious to give me daily reminders that He is present and that I'm not walking thisroad alone. I'm grateful to have Him & my treasured friends who lift my spirits, listen & offer advice/support/reasons tolaugh and are always there for me, be it via a phone call, an email, a card in my mailbox or getting together for lunch or a"girl's night out". I am so blessed to be surrounded by friends and to never have to feel alone or defeated by the challengesthat I face with my kids' many medical issues. Thanks to all of you who read this site & care about my son. Your prayers andwell-wishes in the guest book mean so much to me!P.S. For those who want to know about the other kids ~ Adam's blood pressure is still hovering in the high 140's/low 150'sover 90's. His echo & bloodwork came back normal, but he's still dumping protein in his urine, which would indicate thatregardless of the normal kidney function tests, something is not working properly there. He is scheduled to see hiscardiologist in April after we get home from Portland. Please pray for this to get figured out.Isaac had his echo today & I am still awaiting the results. I asked the tech if she could tell where his murmur was originatingfrom & she said she could, but she couldn't tell me anything more (liability and all that). I'm assuming the results were okaysince no one called today with bad news. He has his audiology test in April after I get back from Portland & he'll have hisspeech evaluation soon thereafter, as well. No answers as of yet, but the ball is rolling in the right direction, so that'ssomething!Packing is going well. We've moved over all of the garden ties, decorative bricks, dirt that we bought to put in the raisedflower beds, roses & lilac bushes. We'll pick up the U-Haul on the 1st, load it, drive to the new house, unload everything andstart getting things set up. Charley has to work on the 2nd, but he has the 3rd & 4th off, so we'll have a couple of days toget things all situated before I leave to take Joshua up north. I'll be offline for a few days, but I'm hoping our internetprovider can get us reconnected in the new house on the 2nd or 3rd. Say a prayer that our internet blackout isn't for long('cuz our internet people also supply our phone & I want that hooked up quickly, too)!I have to admit, even though I'm fairly accustomed to hectic stuff happening in my life, I'll be happier when Joshua's surgeryis over & we're moved & settled & life goes back to what is normal for us.Sign My Guestbook Read TributesFriday, March 20, 2009 10:22 PM, PDTWe've figured out how to halt Joshua's weight loss ~ he'll eat go-gurt that's been stuck in the freezer, so he's getting acouple of those each day, & the extra calories, combined with his reduced activity level, has resulted in his weight beingmaintained. Yea!!! :-) I'm assuming that he'll go back to eating/tolerating formula better after his surgery.In other news, Charley got transferred, so we'll be moving at the beginning of April. It's not a big move ~ just 30 miles away~ and I'll be keeping our team of doctors/dentists/therapist/orthotist in Medford, so I don't have to worry about that aspectof life (at this point in time, I would not be willing to move if it meant losing the team of medical providers I have for all ofmy kids & their myriad of issues). We debated whether we should move or not, but decided that it would be cheaper for meto commute back to Medford 2-3 times per week rather than having Charley commute to work 5-6 days per week. Also, wefound a 2000 square foot, 4 bedroom house on 3/4-acre (with redwoods!) for $10 more per month than what we currentlypay for our 1100 square foot, 3 bedroom house in a treeless subdivision, so that clinched the decision for Charley & the kids.I wasn't sure at first, just because I didn't want to move & the thought of packing the house when I'm up to my eyeballs indoctor appointments was less than appealing. However, Charley & I spent time praying about the opportunity & seeking whatGod wanted for us & ultimately, I felt His peace that moving was the right choice & got onboard with the rest of the family.We'll be moving on April 3rd, unpacking on April 4th, & I leave for Portland with Joshua & Adam on April 5th for Joshua'sApril 6th surgery. Wheeeeee!!!!! We'll have the house essentially set up before I leave (seriously... having autistic kidsmeans we have to get things looking like home asap or else kids fall apart with major meltdowns. I pack in such a way thatwe can get things unpacked quickly & any new house will look like "ours" within 30 hours of moving in), and if Joshuadoesn't get discharged within the expected timeframe (2 days post-op), I might get out of coming back to our current houseto clean & do paint touch-ups (Charley would have to do it). That would be a perk! LOLSign My Guestbook Read TributesSunday, March 8, 2009 10:21 PM, PDTJoshua is losing weight fairly steadily. It's not a huge amount ~ about half a pound each week ~ but he's down almost 2pounds and there's still another month before we go to Portland. And if Dr. W is correct, repairing the pseudomeningoceleisn't going to affect Joshua's GI symptoms whatsoever. I'm hoping she isn't correct about this, because I'm not sure how toget Joshua's weight back up if that happens.At this point, we're letting him eat anything he wants. Unfortunately, that is almost nil (he ate 1.5 GoGurts ~ which I don'ttypically buy, but again, we're trying everything ~ & drank 2 ounces of milk today). He gets four tubefeeds each day, butthat accounts for only half the formula he normally gets (4 ounce feeds versus his normal 8 ounces).... 16 ounces of formulaequals 500 calories & his daily requirement is about 1200, so you see why he's losing weight.I can't feed him any more frequently because he doesn't digest 4 ounces any faster than he used to digest 8, so trying togive him more ounces per feed or more feeds per day results in vomiting.... something I aim to avoid. I don't feed himovernight because he does not tolerate it well and he doesn't sleep worth a darn when we attempt it. And I'm not sure howto get him interested in eating more food when he's not primarily a "by mouth" eater on a good day!In addition to the non-eating situation, he's still having daily headaches & backaches. He's very tired most of the time, whichI am assuming is due to a lack of sufficient caloric intake. His PT & I agreed to cancel his physical therapy sessions until afterhis surgery since Joshua is not getting anything from PT whatsoever right now.We're pretty much in a holding pattern until the surgery. I am hoping that Joshua will get a resolution of more symptomsthan Dr. W expects. I've decided that if Joshua does not have pseudotumor cerebri, I am going to ask Dr. W to order aneurology consult while he's inpatient in the hospital. By doing a consult while Joshua is inpatient, we could get the processwith neurology started 3 months sooner than the July 1st appointment date.Sign My Guestbook Read TributesWednesday, March 4, 2009 10:20 PM, PSTI heard from the neurologist's office today. The earliest new patient appointment they have is July 1st, so that is when Joshua will see the doctor. That isactually good timing, I think, because he'll be well-healed from his surgery and we'll have had plenty of time to see if the recent weakness in his legs wascaused by the pseudomeningocele or not. It will be easier to know what symptoms were being caused by the CSF leak and which ones weren't by thetime we see the neurologist.I know Dr. W will be a bit disappointed by the long wait, but I believe God's timing is perfect and there is a good reason why the appointment with theneurologist is so far out, so I'm not going to worry about it. I'm not in any rush to see her, anyway. :-)P.S. Since Joshua is due to see the urologist, I scheduled him an appointment on the same day as the neurologist appointment. So he'll see Dr. H at11am (neurologist) and Dr. L at 2pm (urologist). If it turns out that he doesn't resume eating normally (for him) post-operatively, I will schedule anappointment with Dr. F (gastroenterologist) on either June 30th or July 2nd. Oh, and he'll have a post-op follow-up appointment with Dr. W that I'llschedule on one of those days, as well ~ might as well see all of the specialists while we're in town (though I'm sure his orthopedist & pain managementdoc will be crushed to be excluded from the party, LOL)!Sign My Guestbook Read TributesTuesday, March 3, 2009 10:20 PM, PSTJoshua's next surgery is scheduled for April 6th. In addition to the pseudomeningocele repair, Dr. W will be doing the lumbar puncture I requested. The LP will assesswhether or not Joshua has high CSF pressure. If he does, he'll receive a diagnosis of pseudotumor cerebri & a ventriculoperitoneal shunt for treatment. However, since hemay not have PTC, we're moving forward with getting an appointment set up with the neurologist. I am hoping an appointment can be made for Friday, April 3rd so that Ican combine the two events in one trip north. It will be a "God thing" if the neurologist schedules Joshua for an appointment on the exact date that I want, but it sure wouldbe convenient, so it's what I am praying for.Sign My Guestbook Read TributesMonday, March 2, 2009 10:19 PM, PSTHappy 3rd Birthday, Joshua!!!!!!Three years ago, Joshua was in the hospital for his birth & subsequent surgery to repair his spina bifida defect.Two years ago, Joshua was at home (yea!), but was in a downward spiral that took him to his first chiari decompression &second cord detethering 6 weeks later, so his 1st birthday was not as happy as it could be because he just wasn't feelingvery good.Last year, Joshua was in the hospital recovering from his third chiari decompression surgery. It wasn't an ideal celebration ofhis 2nd birthday at all.But this year, he's home again (yea!) and despite not feeling his very best, he has enough happy periods that I think he'sgoing to enjoy his special day for the first year of his life and THAT makes me very happy!!!We are hoping that this will be the year that Joshua enjoys some birthday (cup)cake (last year he ate a couple bites in thehospital, but I'm hoping for a full-on "make a mess of it" eating event this year). If it happens, I will post pictures later of theexciting event. And if he doesn't, that's okay ~ we'll all still have fun celebrating the 3rd birthday of a little boy who hasbecome the sunshine in all of our lives!Three years ago, God blessed me with this remarkable little boy. His daily challenges force me to walk the walk of faithrather than merely talk the talk and I'm thankful for that. Joshua, I love you!!!Sign My Guestbook Read TributesTuesday, February 24, 2009 10:18 PM, PSTAn online friend emailed to suggest that I look into the possibility that Joshua may have a condition called pseudotumor cerebri (PTC), which occurs when there isincreased pressure within the skull caused by a lack of proper absorption of cerebrospinal fluid (CSF). In reading about PTC as it occurs in conjuction with chiarimalformation, I learned that 20% of chiari decompressions fail (ie: symptoms return post-operatively). Of those failures, 42% are eventually diagnosed withpseudotumor cerebri. In studies that were researching the connection between PTC and chiari, I found that the majority of children who were treated by having ashunt implanted in the ventricle of their brain had "significant resolution" of their symptoms. This gives me some hope!The symptoms of pseudotumor cerebri in a post-decompression chiari patient are as follows:1. Chiari-like symptoms (headaches, nausea, tingling in upper extremities, dizziness, ataxia, etc ~ you know, Joshua's usual constellation of symptoms which hecurrently is experiencing).2. Brain MRI is normal. There has to be normal flow of CSF around the base of the brain and at the skull-neck junction & normal ventricles. (Joshua has this)3. Elevated CSF pressure as measured by a lumbar puncture (don't know yet if he has this)4. Symptoms were temporarily relieved after draining CSF & reducing the CSF pressure (I wonder if perhaps part of the reason Joshua improves for a short timeafter each surgery is that he loses CSF when Dr. W opens the dura ~ thus lowering pressure ~ and then, within a month to 6 weeks, the pressure has increased so thathe again becomes symptomatic).Perhaps he has PTC in conjunction with chiari and it is THAT which contributes to his "never staying fixed". If he does have problems properly absorbing CSF, thatcould explain why his head grew so quickly as an infant when his skull sutures were not yet fused but he never had hydrocephalus ~ the excess fluid & pressure are onthe outside of the brain, not within the ventricles, so a CT scan shows no ventriculomegaly. This link PTC and how the headache associated with pseudotumor cerebri is extremely painful, often wakes a person from sleep & usually lasts for hours. This isEXACTLY what happens with Joshua ~ he wakes with his head hurting on a daily/nightly basis! The article states nausea is common & vomiting less so ~ when Joshuahas headaches, he is very gaggy & retches, so we give him Zofran and that helps (would suggest nausea to me). It says there can be episodes of transient blurred visionthat may involve one or both eyes ~ Joshua frequently rubs his left eye & blinks rapidly & repeatedly for 30 seconds to a full minute. Perhaps he is having blurredvision? The ophthalmologist did say that Joshua is favoring his right eye over his left, so maybe that's the reason.My plan is to contact Dr. W about this. I will ask her if she would please do a lumbar puncture when she is already in the operating room with Joshua to drain hispseudomeningocele. If he has high CSF pressure, thus confirming the suspicion of PTC, she could place a VP shunt while he's in the OR and we could go on with life &hopefully Joshua would feel good more than 50% of the time. If his pressure was normal, then we would conclusively know that he does not have PTC & we'd be backright where we are now in terms of not knowing what is causing Joshua's symptoms, but at least I would know that we ruled out the treatable conditions beforejumping into the realm of degenerative disorders. I feel like I have to push for that, even if it turns out I'm wrong.If you're praying, please ask God to move on Dr. W's heart so that she would want to check the level of Joshua's CSF pressure. Pray that she would read my note toher & that it would make her want to investigate the possibility of Joshua having PTC more closely.For anyone who may want to read more about this condition, here are a few more links: (Pediatric Neurosurgery Journal article)(1)/PTC%204(1).asp (Linking of chiari with pseudotumor cerebri)Sign My Guestbook Read TributesSaturday, February 21, 2009 10:17 PM, PSTAfter a very long day, we arrived home just before midnight last night. I thought about posting before I went to bed but realized I couldn't find the words to say.This morning isn't a whole lot better, but I'll give it a try.In typical Joshua fashion, there's good news, not-so-great news & bad news.The good news is that his chiari looks great. He's got good flow of cerebrospinal fluid (CSF), no blockages whatsoever, & his ventricles look perfect.The not-so-great news is that the pseudomeningocele (collection of CSF under the skin as a result of a leak in his dura) from November's surgery is still there. Dr. Wcan surgically make a small incision in Joshua's back, drain the pseudomeningocele, determine if there is a tiny leak in the dura and, if so, attempt to repair the leak.Since Joshua doesn't heal properly because of his suspected connective tissue disorder, this surgery may not be successful. After all, Dr. W not only sewed the duralpatch into place during November's surgery, she used fibrin glue & some other gel stuff to attempt to prevent his dura from tearing/leaking and it happened, anyhow,so there isn't much more she can do this next go-round. Also, it's possible that there is no leak & that the collection of fluid is just "left over" from thepseudomeningocele that formed post-operatively. In other words, it could be analogous to a lake being fed by a stream which would cause the lake to slowly expand &get larger (an active leak) OR just a pond, with no source of extra incoming fluid (leftover CSF from previous leak). She wouldn't know until she opened his back &could visualize the situation.Dr. W didn't see any compression of the pseudomeningocele on the spinal cord or any nerves and therefore she doesn't think that is what is causing Joshua's decline,but she hypothesized that some of his symptoms could theoretically be the result of tiny changes in ICP that could possibly be occurring with positional changes. Shedoesn't think draining the pseudomeningocele is going to give Joshua much relief, but it is worth trying. Charley & I reminded her that she's said that before (thatshe didn't think doing a specific procedure would help much) & yet Joshua has had a good outcome every time. Dr. W replied that that is why she was willing to drainthe pseudomeningocele... that since Joshua rarely did anything as expected, he might get more relief than would typically be expected.The bad news we were told was that Joshua is obviously having symptoms that originate in his brainstem & cerebellum and this time his chiari cannot be blamed forcausing them. Dr. W thinks Joshua has a degenerative disorder and something wrong with his brainstem. She has said this to us a few times in the past, but becausethere was obvious chiari or tethered cord involvement at the time, neither Charley nor I gave her concern much thought. We simply didn't believe her. This time,however, we can't easily dismiss what she said because we are watching Joshua slowly decline and there is no explanation for it.I can't possibly share everything that was discussed ~ Dr. W examined Joshua & then sent Adam & Joshua out to the waiting room, then she spent another 45 minutestalking to Charley & me, comparing Joshua's old MRIs with his new one from yesterday & showing us the changes/differences, discussing her concerns, answering ourquestions, etc. Joshua wasn't even supposed to see her yesterday ~ he'd been put on her P.A.'s schedule ~ but Dr. W said that she'd looked at his scans before shewent downstairs (had an emergency shunt malfunction to take care of, so we had to wait for her to get done with that) & wanted to talk to us. Bottom line is that whilea degenerative disorder is what she strongly suspects, until we do the full neurological workup (which is what she wants us to do... she said she could set it all up withthe neurologist's team), we won't know for sure. Regardless, it was fairly devastating to realize that there is nothing we can do to "fix" Joshua this time. That we canuse pain meds for his headaches & backaches, continue to do PT and adjust his bracing, as necessary, to accommodate the increasing weakness & tone change in hislegs, adjust his tubefeeds as needed (he's only tolerating 4 ounces per feed at this time), etc... but we can't make this go away. Yes, we'll have the pseudomeningoceledrained & maybe we'll get lucky & it will help Joshua, but Dr. W was very clear in explaining to us that it won't last. That because of what she suspects is going oninside Joshua's body, we can treat symptoms, but we can't fix the underlying problem & ultimately, the outcome may not be a good one.She told us to go home, think about it, talk about it, and then let her know what we want to do (regarding the neuro workup & surgery). We're supposed to give her 2weeks to look more at Joshua's scans & confer with others about his situation and then we'll reconvene to make a new 'gameplan'.Last night, Charley & I were devastated. Today, we've both agreed that we're going to hang out in Denial (it's lovely this time of year) until Dr. W's suspicions areeither confirmed or refuted. Yes, we will do the neurological workup, because knowing for sure one way or the other is necessary for our sanity. We will also moveforward with the surgery to drain the pseudomeningocele because we are hopeful doing so will help Joshua more than Dr. W expects it to. We are approaching itrealistically ~ not expecting cerebellar/brainstem symptoms to completely disappear from draining a lumbar pseudomeningocele ~ but we're believing that since Joshuahas always had atypical symptom presentation in the past, there is a chance he'll get more relief than would normally be expected from such a procedure.This is a very scary situation for us to be in and I don't want to minimize it and act like we're not bothered at all by our visit to Dr. W yesterday because obviously, weare. On the flip side, I refuse to freak out over something that, at this point in time, is only a suspicion... a possibility. If the suspicion gets confirmed, Charley & Iagree that we will indulge in some major hysterics before we breathe deeply & move forward again. Ultimately, though, we are going to lean on God, ask Him to healJoshua, and trust that He still has a plan & all we have to do is take one step at a time, believing that whatever He brings us to, He'll also bring us through. Becausereally, what else can we do?Sign My Guestbook Read TributesWednesday, February 18, 2009 10:17 PM, PSTI'll be leaving tomorrow for another trip to Portland with Joshua. He'll have MRIs of his brain & spine & flow studies toevaluate for blockages of CSF (cerebrospinal fluid) on Friday morning & then he'll see his neurosurgeon in the afternoon.Even though we've done this multiple times, it's still a stress-inducing event that I don't ever really get used to. It's one ofthose things that doesn't get easier no matter how often you go through it ~ kind of like caring for a kid with a stomachvirus; the 10th time you deal with it is just as unpleasant as the 1st time. Sure, you have an idea of what to expect, butgoing through it still sucks.So.... as usual, I am requesting prayer coverage for this trip. Prayers for our safe travel up & back, for Joshua to travel well& for his peace of mind, for the MRIs to go perfectly, & for definitive answers when we see the neurosurgeon.Thank you.P.S. Today marks the 1-year anniversary of Joshua's last brain surgery. Kind of ironic that we're going back to evaluate hishead again. David & Sarah's last chiari decompressions were February 21, 2005.... we certainly seem to like visiting theneurosurgeon this time of year!Sign My Guestbook Read TributesTuesday, February 10, 2009 10:16 PM, PSTJoshua's MRIs will still be on February 20th, but now we'll be doing them in Portland rather than locally. The reason for thechange is that Portland has the ability to do CINE MRIs, which show the flow of CSF around the brain & spinal cord, and ourlocal imaging place doesn't. We need to know if there are any blockages occurring from a buildup of scar tissue, so it will beworth the trip to get the specialized scans.After the MRIs, Joshua will see his neurosurgeon in clinic and we'll discuss what our options are.He was weighed at the ped's today and has lost half a pound, which isn't a surprise since his formula intake has dropped. Hetypically loses a pound or two when his chiari acts up, so this isn't a big concern to anyone, including Charley & me.Obviously, if Joshua were to lose a lot of weight, we'd intervene, but at this time, he's doing all right. It's just one more thingwe're monitoring the progress of.Sign My Guestbook Read TributesThursday, February 5, 2009 10:11 PM, PSTJoshua saw the ophthalmologist this morning, got his eyes dilated & examined thoroughly. The results? No papilledema. Hisoptic nerves look fine, so he does not have hydrocephalus. However, the depth perception concerns are legit because his lefteye is not working as effectively as his right. The doc said Joshua is favoring his right eye. He did some refractory-thingytesting and came to the conclusion that Joshua's visual problems are not caused by his eyes, per se. He believes the ataxia iscaused by a problem with Joshua's cerebellum, which wasn't a surprise to hear, but WAS a disappointment. He said thatafter we get his head taken care of, we may need to patch his right eye so his left eye doesn't stop getting messages fromhis brain (which would result in him losing the sight in that eye ~ but that won't happen because we're aware of it and willstay on top of things).I came home and called the neurosurgeon's office to leave a voicemail message giving them a 'heads up' about what's goingon. Instead of leaving a message, I was able to speak directly with the P.A. and she said she'd like us to come to Portland toget the scans done so they can have CINEs as well as the usual MRIs & so Dr. W can see Joshua in clinic. She's going to becalling me back today or tomorrow with details once they're scheduled, so I'll update more when I have heard back fromtheir office.The P.A. asked, "When did we last do his head?" and when I answered, "A year ago... February 18th," she was happy to hearit. We both agreed that considering that Joshua had had 3 brain surgeries in 10 months, for him to go an entire year withouta problem was pretty good. She said, "So he's heading down the same track?" And I told her he was. She is going to talkwith Dr. W to let her know what's up and we chatted about where this is probably going to lead (brain surgery #4). It'sdisappointing, but a blessing in a way because at least Joshua DID have a good month in December, and at least we have agreat rapport with our neurosurgeon and her P.A., so there's not a lot of hoop-jumping anymore.Sign My Guestbook Read TributesWednesday, February 4, 2009 10:10 PM, PSTThings have gotten worse.Joshua is throwing up all solid food that he eats, though admittedly, that isn't a lot since he doesn't eat a lot by mouth. Still,it's significant that he's not digesting solid food even with the erythromycin on board to help with gut propulsion. He's alsothrowing up about half the volume of each of his tubefeeds and he is only tolerating 4 ounces at the most now. I'm givinghim Zofran every 6 hours but it is only marginally effective ~ I think it helps him to keep down *something*, but not much.His headaches are more frequent, his balance is worse, and his stamina is poor. He went to PT today and was okay for 20minutes before he was too exhausted to do anything more.He sleeps a lot and is irritable a great deal of the time when he's awake.I'm taking him to the ophthalmologist tomorrow morning to see if he has any sign of hydrocephalus (via swollen opticnerves). He may have a vision problem, but I no longer believe I can attribute his symptoms solely to that possibility. At thispoint, he's behaving exactly as he did prior to his 1st, 2nd & 3rd chiari decompressions, so my guess is that he's got scartissue causing problems and we'll be heading to Portland to get the back of his brain cleaned out again eventually. (heavysigh)Just over 2 weeks until his MRIs. PT asked today if we could move them up, but it's impossible because the anesthesiologistshere in town do sedation for MRIs only 2 days per week.... so what's scheduled is scheduled, especially since Joshua's scanswill take a chunk of time to do. So all we can do is wait to see what they show.In other news, I spent yesterday afternoon in the ER because a side effect of the blood pressure medication caused me to gointo shock as a result of low potassium. I had the symptoms of a heart attack, which scared me since my dad had a doublebypass at age 40 and died of a heart attack at 52. After tests were done (EKG, angiogram, chest xray, bloodwork), it wasdetermined that the culprit of my symptoms was not a myocardial infarction (thank you, Lord!), but the blood pressuremedication side effect. I was treated with a megadose of potassium chloride and observed for a few hours to make sure mysymptoms abated. I saw my regular doctor today, got put on a different BP medication, and now have permission to rest anddo as little as possible until the beginning of next week. I'm okay, albeit still very tired and my muscles are super sore (likeyou'd feel the day after a hard workout). Thankful, too, that it wasn't anything very serious & that it was easily reversible.Praise God for that!Sign My Guestbook Read TributesFriday, January 30, 2009 10:10 PM, PSTSomething is up with Joshua. I am not sure yet just what it is, though. I spent some time yesterday emailing & making phone calls to different doctors & getting someappointments set up, so hopefully that will help get this figured out.He's having headaches that require pain medication to manage, is gagging/coughing/vomiting more, is having difficulty tolerating more than 5.5 ounce feeds (down from 8ounces), is sleeping a lot more than is typical for him & isn't interested in doing some of the things he's always loved (like playing at the computer). While he is fine for mostof each day, we're seeing more bouts of symptoms and lethargy as time goes by. This has never been a good sign, historically-speaking, for Joshua.His physical therapist has commented a few times that Joshua doesn't always appear to have good depth perception and a few days ago, when Adam was holding Joshua upto a windchime, he wasn't able to reach out and touch it. He repeatedly swatted in the vicinity of the chimes, but kept missing them. It was odd.I scheduled an appointment with the ophthalmologist to get Joshua's eyes checked & to make sure he doesn't have any optical sign of increased cranial pressure nextThursday, February 5th. I don't know if what we're seeing is chiari-related or if it's something easier like nearsightedness or astigmatism, but since vision problems can causenausea, vomiting, imbalance & headaches, too, I thought it would be a good idea to check out Joshua's eyes before automatically assuming his symptoms are chiari-related(though I'll admit that's where my brain goes when he starts acting like this). It'd be nice if this is just a simple vision problem that can be fixed with glasses.His brain and spine MRIs are scheduled for February 20th. Unfortunately, the imaging center in town doesn't have the ability to do CINE scans (specialized MRI that shows theflow of cerebrospinal fluid around & through the brain & spinal canal), which means we won't get to see if there is any blockage of CSF flow in the back of his head. Isuspect there may be more scar tissue partially blocking things because Joshua tends to be much more symptomatic when he wakes up in the morning or after a nap & goesfrom lying down to an upright position, so I am interested in learning what the MRIs show.I am hopeful it's just his eyes. The mere thought of another round of chiari makes my heart sick and exhausts me. I realize it's been awhile since his last brain surgery(February 18th will mark 1 year), so I shouldn't complain so much (I mean, after having 3 brain surgeries in 10 months, going for an entire year without problems has beengreat), but darn it all, I'd like for him to never need another chiari surgery again. I can't prevent him from needing another detethering eventually, but I've been hopefulthat since he's gone so long without any chiari-type symptoms (not counting when his cord was pulling his brain down prior to his November surgery), he'd gotten past thathurdle permanently. I know that there's a chance these symptoms aren't pointing to chiari, but to even have to consider that it could be that monster rearing its ugly headagain makes me irritated, frustrated & sad all at once.Sign My Guestbook Read TributesTuesday, January 27, 2009 10:09 PM, PSTMRIs will be on February 20th.Seeing the orthotist today.Having bouts of back pain bad enough that he asks for medicine (ibuprofin). Not a clue what that's about. Maybe some scartissue pulling near a nerve or something?That's about it for today.Sign My Guestbook Read TributesSunday, January 25, 2009 10:09 PM, PSTThanks for the prayers ~ they appear to be working. Joshua is having occasional headaches still, but they are not asfrequent as they were. His episodes of gagging and vomiting are not as frequent, either, though part of that improvementcould be due to his not getting more than 6 ounces at a time in a tubefeed again. I'm not entirely certain why he is nottolerating 8 ounces anymore, but if it's chiari-related, it's a subtle change at this point. As for his balance, it's about thesame, so that may be just the way he is now (a 'new normal') or it may be chiari-related. More time will be needed to assessthe situation.We're still doing the MRIs. Since it's not urgent, it's not getting scheduled right away, but I'm going to call on Monday to findout when we can expect to get Joshua in. I'm hopeful we'll get a date by mid-February.We've run into a little snag with Joshua's new braces, but it's not a big deal & will be easily remedied. The left brace is notworking well for what Joshua needs, so I'll be taking him back to the orthotist to get it revamped. Our PT called to discussthe situation with him & he's more than happy to change things around so that Joshua's braced appropriately.Other than that, things are going along pretty much the same with my little guy. He's only 6 weeks away from turning 3years old, which kind of blows my mind because I don't see how he can possibly be moving into preschool years already!Sigh... that's fun in a lot of ways, though, so I'll try to focus on the positive rather than being bummed that my baby isn't ababy anymore.Sign My Guestbook Read TributesFriday, January 16, 2009 10:08 PM, PSTJoshua has been having some problems with balance, vomiting, headaches & generally being 'gaggy'. Historically, this hasbeen a constellation of symptoms that is linked to chiari. As such, he will be getting MRIs of his brain & full spine (cervical,thoracic, lumbar) soon ~ the ped's nurse will call to let me know the date after she gets it set up.We're scanning his spine in order to have a new post-operative baseline for comparison purposes the next time he hastethered cord symptoms, and the brain MRI will help us evaluate whether there's something going on with his chiari or abuild-up of scar tissue.On a good note, his weight is back to exactly what it was on Oct. 22nd ~ 32lbs (he'd gotten down to just under 30lbs afterhis surgery). He's between the 75th & 90th percentiles for weight and remains just above the 95th percentile for height. Dr.S told me to keep doing what I'm doing with regards to Joshua's tubefeeds & solids. She was pleased with how he's growing& I was reassured to know that despite my feeling like I never know if he's getting the right amount of formula each day, it'sall working out in the end. [And in case you're wondering how things went from being great on January 1st to being dicey on January 16th, all I can sayis, "Welcome to Joshua's world." He has a history of turning on a dime, going from fantastic to horrible in the space of a fewdays. He's not super-symptomatic right now, but enough so that it's noticeable & since I took him to the doctor for a weightcheck today, I told her what we're seeing at home. The ped takes Joshua's symptoms seriously, even when they're mild,because she knows how quickly he can spiral down... he's done it often enough! We're all still hopeful that whatever isbugging him neurologically will settle down & he'll go back to being okay again without any intervention from up north.]Sign My Guestbook Read TributesMonday, January 12, 2009 10:07 PM, PSTAs I sit here at 11pm, waiting for Joshua's last tubefeed of the night to be complete so I can go to bed, I wonder when thetime will come that he no longer needs to be fed through a g-tube. His GI doc doesn't expect it to happen until he's at least6-7 years old. Dr. F says we'll have to wait until J is old enough to understand that if he doesn't want a tubefeed, he has toeat a certain amount of food at each meal. She also told Charley & me that there's a chance Joshua will never be able to eatenough food to sustain himself because of his gut motility problems & the fact that he doesn't get hungry (or he doesn'trecognize his body's hunger cues ~ either way, he can go all day without eating & if no one offers him food or I don't tubehim, it wouldn't bother him in the slightest & he wouldn't ask to eat). I think he'll eventually be able to get off the g-tube,but I am also beginning to believe that it may not be until the timeframe Dr. F has predicted.Can I confess that the thought of 3-4 more years of tubefeeds depresses me? It's not that feeding via a g-tube is difficult.It's not. You just pour formula into an IV bag, prime the pump (ie: move some of the formula through the tubing to get rid ofthe air), hook the attachment tube to his mickey button (the button that sticks out from his belly), start the pump & wait forthe formula to slowly be moved into his tummy. And giving medications & vitamins is extremely easy, which is a definiteadvantage every day, but even moreso when Joshua's in the hospital (no fighting a little kid to take nasty-tasting stuff & wenever have to wake him up to administer meds). So what's my problem? Sigh.... I don't exactly know, but it's something I'mtrying to hash out.I suppose part of it is that tubefeeding is not convenient. I can't just make breakfast/lunch/dinner/snacks for the kids,distribute a portion to Joshua & call it good. If he does decide to eat something, I have to monitor how much he eats &adjust his next g-tube feed accordingly, especially if he's due to get a feed soon after he's decided to eat something (hisstomach will hold 8 ounces total; any more than that & he'll throw up, so if he has eaten a couple ounces of food, I can'ttube more than 6 ounces if I feed him within an hour of his eating those ounces). And there's never any rhyme or reason tohis eating, either. One day, he decides to eat a normal, toddler-sized portion for lunch & dinner and the next day he'srefusing all solids. Another day, he'll decide to drink lots of fluids from a sippy cup & yet another, he'll refuse all but a fewounces over the course of a day. As a result, I never know what he's going to need from g-tube feeds with regards tocalories & fluids from day to day, so I have to keep an eye on his intake & make adjustments as the day goes along. It wouldactually be a lot easier if he didn't eat any solid food because then I'd know exactly how much formula to give him each day& I could give him tube feeds at regular intervals. With him being willing to eat little bits here & there, it's nowhere near aseasy.Then there's the social aspect. Joshua already gets stared at because of his AFOs & wheelchair. If we have to give him atubefeed while we're out in public, it's just one more thing for people to gawk at & ask (sometimes stupid) questions about.Right now he doesn't care, but I do. I don't like the insensitive comments (like being told that he's too old for formula, orthat he's old enough to be able to eat food, or if I would offer him things he likes, he'd eat, or if I refused to cater to him,he'd eventually eat what I offer him instead of refusing it).There are so many things that Joshua has to deal with that most kids his age don't ~ daily cathing, enemas & medications,wearing braces, using a wheelchair, going to PT, multiple surgeries/doctor appointments/tests, etc. It strikes me as unfair tohave added feeding difficulties on top of the pile. And yeah, I know, some of you reading this whine have kids who are moredifficultthan Joshua, kids who have a laundry list of "stuff" going on, so while you could tell me to get a grip & stopsniveling, I'm going to instead assume that you will understand how sometimes it's the littlest thing that gets you down.That's how I feel about tubefeeds. It's a little thing, just one more thing to do each day (several times each day), but it hasthe ability to exhaust & exasperate me, and not having any foreseeable end to it makes it difficult to imagine a time whenthe situation will improve.I guess I should take Joshua in for a weight check so that I can get some reassurance that he's gaining adequately & also tochat with Dr. S and see if she has any suggestions. Maybe that would help push this molehill back into its proper perspective,because as of right now, it seems more like a mountain to me (even though I know in the back of my mind it's really not).Sign My Guestbook Read TributesWednesday, January 7, 2009 10:07 PM, PSTJoshua got his new AFOs today, along with a new pair of Answer 2 shoes to fit them (size 9 ~ without braces, he'd only weara 7.5). The right AFO is hinged with dorsiflexion assist, same as the one he already wore. The left one is hinged to allow fullrange of dorsi- & plantar-flexion (up & down movement of the ankle) while providing medial-lateral support (side to side)since Joshua has been walking on the outside edge of his foot since his last surgery. We picked a fun blue & white pattern(called Ice Age 2) & Joshua likes it a lot. I put a couple pictures in the "photo" section.We'll get him used to wearing the new braces and watch for signs of pressure problems, but I don't foresee any majorissues. We're very lucky to have an excellent orthotist who makes good braces for kids. He has a child with spina bifida,himself, and is therefore aware of the needs of SB kids (not to mention that he's a smart guy who happens to be reallytalented at what he does, lol).I will admit, I had a momentary twinge of sadness when I saw the orthotist walking in carrying 2 AFOs. Joshua has onlyneeded a shoe insert called a UCB for his left foot thus far & I had no idea he'd be getting an AFO this time around. Ishouldn't have been shocked ~ I knew he needed more support than the UCB was providing ~ but I had thought it would besomething like an SMO (a brace that goes just above the ankle). It's not really a big deal, of course.... but still, it gave me amoment's pause.Looking back on the bright side, I'm hopeful that now that he's got his new braces, Joshua will walk even better & that thebalance issues that his PT & I have been noticing in the past week will be resolved. And hey, if the kiddo has to wear AFOs,at least his are cute! That's something, right? :-)Sign My Guestbook Read TributesThursday, January 1, 2009 10:06 PM, PSTHappy 2009!!!Here's hoping this upcoming year is a very boring one, medically-speaking. :-)We're off to a good start. Joshua is doing well. He's able to tolerate 8 ounce tube feeds now, which is the largest volume he'sever been able to take without vomiting. He's eating more often during the day, as well.We'll be picking up his new braces next week, he'll continue receiving PT twice a week (down from 3 times per week) andother than that, life will continue on as normal.He's not having any pain at all (yippee! Thanks be to God for answering that prayer) and his walking is almost as good as itwas prior to surgery. His stamina is not what it used to be, so he continues to use his wheelchair when we go out, butoverall, Joshua has had a fantastic recovery from his most-recent surgery & I couldn't be happier with the outcome & wherehe's at, today.Best wishes to you for a prosperous & God-filled 2009!Sign My Guestbook Read TributesThursday, December 25, 2008 10:04 PM, PSTMerry Christmas!!!I hope you & your family enjoy a pleasant day together as you celebrate the birth of our Savior, Jesus Christ!We'll be opening presents & doing our Christmas celebration this upcoming Sunday, when Charley has a day off from work.He worked until 3am this morning & has to go back into work in just a few hours (so I should probably go wake him up) andthe kids did not want to "do Christmas" without their dad, so it was unanimously agreed that we'd wait until he couldcelebrate with us. We'll have a cake today, though, in honor of Jesus' birthday.Blessings to your household from ours!!!Sign My Guestbook Read TributesWednesday, December 24, 2008 10:04 PM, PSTWe picked up Joshua's new wheelchair today (photos in the picture gallery). It's a red & black Quickie Zippie 2. The processtook just under 2 months (the seating evaluation, where measurements & decisions about what we wanted for the chair weremade, was October 30th), which is a quick turnaround, but the process was not a smooth one aside from our awesomeinsurance company nurse case manager giving the preauthorization approval less than 24 hours after the claim was faxed toher. The medical supply company we worked with was less-than ideal. And if you look at the pictures, you'll see the the chairdoesn't have armrests attached yet, which is because the company ordered the wrong ones. They wanted to keep the chair(which they've had in their office since December 12th) until the new armrests arrive, but I refused. It's not like Joshuaneeds armrests & they aren't a vital component of the chair, so he'll be fine without them for awhile. In the meantime, hegets to use his new wheels.The chair fits him well, with lots of room for growth (that part isn't really "pretty" to look at, but what can ya do? It has tolast for the next 3 to 5 years and at the rate Joshua grows, he needed a chair that would accommodate a lot of inchesobtained between ages almost-3 and almost-8!). He can speed around in it even faster than he was able to move in theloaner chair, which makes him a very happy little guy.Merry Christmas to you (the readers of this site)!!!Sign My Guestbook Read TributesTuesday, December 16, 2008 10:03 PM, PSTJoshua ate cereal for the first time in his life today. For the first time in MONTHS, he ate breakfast rather than getting hismorning meal through his g-tube!Also, he hasn't complained of head or back or leg pain for the past 5 days! Five days without pain.... he hasn't had the luxuryof being pain-free in such a long time!His PT says he is regaining strength in his left leg about as well as can be expected and she is happy with his progress (asam I, of course).He only throws up once in awhile now (if he gets overfed or if he chokes on something or gets a hair in his mouth ~ he stillhas a sensitive gag reflex).I am thanking God for these blessings & enjoying the stable place Joshua is currently at. May it last a good long time!Sign My Guestbook Read TributesMonday, December 8, 2008 10:03 PM, PSTJust a quick update: Joshua is healing well. His incision is fully closed & he's not having any swelling from the CSF leak. Dr.W didn't think it could scar over in less than 3 months (cuts/tears in the dura have to scar over versus clotting & healing likecuts in the skin), but I'm betting that Joshua, with his propensity to over-scar (is that even a phrase? It is now! LOL), will beleak-free sooner than that. He is allowed to have his brace off for an hour per day now and even though we forgot to put iton after the allotted time today, there was zero swelling in his back after 7 hours without the brace being on. I take that as avery good sign as far as the healing dural tear, but not such a great sign as far as how quickly scar tissue is reforming.He continues going to PT 3 times per week and that is going well. Today he got casted for his new braces at the orthotist's &we're still waiting to find out the ship date for his wheelchair from the medical supply company, but maybe we'll haveeverything by the end of the year. That's my hope, anyhow.Joshua isn't having headaches anymore, thankfully, but his back & legs continue to hurt. I was thinking that it could just be areaction to the surgery & PT confirmed that today, saying that we should give him another 4-6 weeks before we getconcerned that the pain is due to neuropathy and not normal post-surgery soreness. Either way, I'm treating him with painmeds as needed and we still have the option of using the pain patches when he's having a particularly difficult day.He's been able to pee a little bit on his own, though I can't say for sure it's not just leakage versus his choosing to "go", buthe is still unable to have a bowel movement without assistance. Those changes, in addition to the new muscle weakness inhis left leg & both hips, appear to be the collateral damage incurred as a result of detethering him this 4th time. It'sobviously a much-better outcome than paralysis, but no damage would have been even better. As the orthotist told metoday, even a small change in muscle function can have a large impact on overall functioning a few years down the roadwhen Joshua puts on more weight & height.Overall though, he's feeling better than he was pre-surgery and I'm very grateful for that improvement.Sign My Guestbook Read TributesMonday, December 1, 2008 10:01 PM, PSTI took Joshua to see his new physical therapist (PT) today. She is nothing short of fantastic and I am so so so so so happy that she's a part of Joshua's medical teamnow.Joshua's previous PT was amazing. Seriously, she had an incredible wealth of knowledge about pretty much everything relating to anatomy, physiology, kinesiology &everything in between. She could hold Joshua, feel specific muscles & just know what was going on with him. When she moved back to Australia at the beginning ofthe year, I was heartbroken to lose her services. I've been incredibly blessed, however, that we have developed a genuine friendship (versus the professionalrelationship we had when she was Joshua's therapist) & she is always willing to give her opinion on what's happening with my littlest guy. She's been able to tell methings that then get confirmed by local professionals, which I think is an amazing feat to accomplish from 8000 miles away! Anyway, my point is that about 6 weeksago, S called to give me the name of a private physical therapist (not involved with Early Intervention) and told me I should give her (T) a call. So I did. And, asprovidence would have it, T had an available opening & was happy to take Joshua on as a client.Charley, Joshua & I met with T at the beginning of November and I was immediately reminded of S, our previous physical therapist. T was friendly & knowledgeable &our personalities were a good match immediately. She is so completely different from A, the PT that has been seeing Joshua once a month through EarlyIntervention, and that's a really good thing! The EI therapist never even touches Joshua! Seriously! How can a physical therapist do her job without ever laying handson the child??? It's mind-boggling.So, I was looking forward to today's visit because I suspected that seeing T would be informational... and I was not disappointed. In fact, the entire therapyappointment reminded me so much of our previous therapist that I felt an intense pang of longing to see S again! T tested all of Joshua's muscles from the hips down& took notes of her findings as she went along. She explained every single thing she was doing, why she was doing it, & what the results of each test meant. Sheconfirmed everything that S had told me she'd seen in the videos I'd sent her (I taped Joshua doing specific things that she had requested) and since she knows S,too, and she knows we're friends, she asked me what S had told me ~ instead of being threatened by the knowledge that I have a friend who's a PT & gives me advice(like the other therapist, A, is), T was happy that I'm getting information from more than just one source (her). She was very thorough, even getting me to sign arelease of information form so that she can obtain a copy of the operative report from the surgery because she feels that if she knows what was done inside Joshua,she can better help him on the outside. She does work with scar tissue to try to get it to be more flexible & to work with a person's movement rather than just sittingthere, tight & pulling on structures, and she is optimistic that this will help keep Joshua out of the operating room a bit longer than usual (a goal I can support withgusto!!!). She was fantastic with Joshua, too, and he warmed up to her quickly, which is impressive considering he's only met her one time before today and he'sgenerally very anti-being-messed-with so soon after surgery. Overall, it was a really great appointment. Joshua will work with T 3 sessions per week for the timebeing... eventually I'm sure it'll be less, but for now he'll be a busy little guy.The results of the muscle testing weren't a surprise to me since S had already told me what she thought was going on & I trust her (even from halfway across theworld). Basically, Joshua's quadriceps & hip muscles on the outside of his body are extremely weak. The left side is now weaker than the right. There are grades ofmuscle strength going from 0 to 5, where grade 5 is normal. Grade 3 is needed for functional walking. Joshua's got grade 2+ on the right leg and grade 2 on the leftleg (pre-surgery, his left leg was a 4 & his right leg was a 3). The functional walking scale also goes from 0 to 5, with 5 being perfect and 0 being unable to walk. Joshuais currently a 2, which is known as a "household ambulator" and means that walking is possible indoors on flat, horizontal surfaces. With therapy, he may get back to agrade 3, which would classify him as a "neighborhood ambulator" and that means he would be able to walk indoors & outdoors on uneven surfaces, could climb anoccasional step or stair & could walk within a limited and restricted walking distance. He used to be a grade 4 (could walk anywhere, on any surface, for any distance,but had a noticeable abnormality to his gait).We're going to be taking Joshua swimming a few times each week to help strengthen his muscles & there will be exercises we need to do, as well. The biggest challenge(aside from generalized strengthening) will be to prevent problems that can crop up as a result of muscle imbalance. Muscles are organized into groups that opposeeach other ~ when one muscle contracts, the opposing muscle relaxes. So when your quadriceps muscle on the front of your thigh contracts, your hamstring muscle atthe back of your thigh relaxes. But when you have weak quads & strong hamstrings or strong hip flexors & weak hip extensors (another issue Joshua now has), animbalance occurs & that can pull muscles and bones out of place and create new problems that have to be dealt with. S told me it can be a big 'ol mess & T confirmed it,so I will diligently do whatever is recommended in the hopes of helping Joshua avoid that particular situation.He'll be getting new braces, but T wants to see him for a few more sessions so she can be certain of what Joshua needs before she puts the order in to thepediatrician (who writes the prescription that then goes to the orthotist who makes the braces). She thinks his left foot may need some extra support and she's notsure she wants to keep him in the hinged AFO on the right foot. He turns both feet inward when he's walking & he bears his weight on the outside edge of his leftfoot & pulls the inside of that foot up a little as he takes each step. He definitely walks better when he's got his braces on, though. Without them, he shuffleshesitantly and wobbles a lot more than when he's got the extra support.Um.... what else? Oh yeah ~ he's 31 pounds, so he's down 1.5 pounds from his pre-surgery weight, but that's no surprise & no one is worried, including me. He'll regainit in time. He's also having a little growth spurt, as none of his pants are long enough for him anymore! That tends to happen (he grows) right after his cord isdetethered. It happened with David & Sarah after their cords were detethered, too. Interesting phenomenon, I think!I spoke with the representative from United Mobility & Seating, the company we're getting Joshua's wheelchair from, and she told me that she should have a shippingdate for me on Friday, which means he'll have his chair soon! Considering we did the seating evaluation on October 30th, this has been a super-fast turnaround.All in all, it was a satisfying day and I am really happy to be starting therapy with our new (awesome!) physical therapist. I have hope for Joshua again and that feelsgreat, too!Sign My Guestbook Read TributesTuesday, November 25, 2008 10:01 PM, PSTJoshua has been discharged from the hospital. Yea!!! We are going to spend the next 24 hours at the Ronald McDonald House & then we'll check in with Dr. W before wehead home tomorrow afternoon (around 3-4pm). We should be home by 10pm tomorrow night.The neurosurgical team is hopeful that Joshua's walking will improve over time. He's more steady today than he was yesterday, which is a relief. He walkslike he's drunk and staggers a little, even tilting & making us think he may fall over backward (hasn't happened, though). Knowing that it's probably atemporary thing makes it less disconcerting to watch.I'm off to pick up his 7 prescriptions from the pharmacy (zofran, erythromycin, prilosec, colace, keflex, tylenol with codeine & theravac enemas) and thenwe'll head outta here. Joshua has to wear the corset 24 hours a day for another 8 days (2 weeks total) and then he has to wear it for 23 hours a day for 2more months. After that, he'll gradually get to taper off how many hours per day it's on. The CSF leak he had was significant and it will take months tofully heal. Dr. W said that the next time Joshua has surgery, she will immediately put a corset on him post-operatively to try & prevent a repeat of whathappened this time. I think that's a wise idea.So... only 13 days in the hospital this time. Dr. W's P.A. & a couple nurses were teasing me that they were disappointed that we didn't beat our record(16 days). I just laughed at them & said I'd be happy to never beat that record or come close to it again! We've been getting/giving hugs & sayinggoodbye to everyone we know (and it always surprises me how many people that is). Joshua has been cruising around in his wheelchair, impressingeveryone with how well he maneuvers himself in it, and generally flirting with the nurses & doctors. It's amazing how much he perked up & how hisattitude improved when I told him he was going to get out of the hospital today. He's much happier today!Thanks once again for all of the prayers, encouragement, balloons, toys, cards, emails, phone calls & care packages given to Joshua & my family duringthis hospitalization. The online support has been incredible & made such a positive difference for me. I am appreciative & grateful to you all. Thanks somuch!!!Sign My Guestbook Read TributesMonday, November 24, 2008 10:00 PM, PSTJoshua has had two 5-ounce feeds. He definitely needs zofran to help keep the formula down, but the good news is that it ISstaying down.He's been out of bed & in his wheelchair twice now, which has made him very happy.He's attempted to walk several times but we're finding there are some functional changes. I don't yet know how much isrelated to his recovery & how much is permanent. His knees buckle and he needs help to stay upright... he walks like thescarecrow in the Wizard of Oz. When he tried to get down out of a chair by himself, he collapsed. This has happened a coupleof times & it's obvious that Joshua is confused by his legs not bearing his weight like normal. Again, I don't know if this isdue to his being in bed for so long or if the CSF leak and altered fluid balance in his brain/spine is affecting things. We ("we"being the nurses, Adam & I) are waiting for Dr. W & Jenny to come evaluate Joshua & see what they think.It's looking like we may get out of here tomorrow ~ Joshua will get discharged to the Ronald McDonald House overnight &then we'll see Dr. W in-office before leaving to come home Wednesday afternoon. She wants to make sure that he's okaybeing upright and moving around for 24 hours before she clears us to leave town. That is the plan, anyhow, assuming thatDr. W isn't concerned by Joshua's functional status. The nurses think she'll still discharge him with orders to see the PT soonafter we get home. That won't be a problem as Joshua has appointments scheduled for next Monday, Wednesday & Fridayalready.I'll update later with news after Dr. W comes to see Joshua.Sign My Guestbook Read TributesSaturday, November 22, 2008 9:58 PM, PSTWe had a good day here. Joshua is up to 4.25 ounce feeds and didn't throw up at all today. It was great & it also felt really weird because he hasn't gone a full daywithout vomiting in a looooong time. I could totally get used to this! :-)We had a couple of nice surprises today, too. This morning, the son of our pediatrician's nurse (who is a friend of ours) showed up with groceries for Adam & me.Nurse Karen (not to be confused with best friend Karen) had called her son and asked him to make the delivery on her behalf & he said he was happy to do it. So wewere blessed with an answer to prayer & we got to visit with our friend's son, who is a really neat young man. It was a good start to the day!The second surprise arrived in the form of a care package from an online friend. She sent many wonderful goodies, among them a new blanket for Joshua (that herfamily had prayed over) & a really pretty friendship bracelet for me. Her kindness really lifted my spirits today and it was fun seeing Joshua get all happy & excitedover his new blankie & stuffed car. He was playing "peekaboo" with the neurosurgeon (pulling the blanket over his face and "hiding" and then emerging with a laughwhen the doctor asked, "Where did Joshua go?") and we had a couple nurses pop their heads in the door when they heard Joshua's laughter. Everyone agreed that itwas fantastic to hear him so happy. Thanks, H! Your box of treasures made our day around here!Sitting up is slowly improving. We got Joshua in a wagon today for a little ride and he loved it. He ate a little solid food today, too ~ a few bites of mashed potatoes, asquare of Hershey bar & a few bites of a donut (courtesy of the neurosurgeon's bribing him to sit up! LOL). It wasn't healthy stuff, but at this stage of the game, noone cares. All that matters is that he was choosing to put food in his mouth AND that he didn't throw it back up!Oh! And the best sign of progress was that he was able to stretch out his need for tylenol with codeine to every 6 hours (from every 4)!!! Every little step forward isencouraging to me, but the reduction in his need for pain medication is the best because it bolsters my hope that he's going to be pain-free soon, and that was my #1wish/hope/prayer for the outcome of this surgery.By my calculations, Joshua will hit his goal for food intake on Monday (assuming no setbacks, which I don't expect to happen now that he's doing so well). If he cantolerate sitting up for a decent amount of time by then, it's probably realistic to think he could get discharged late Monday or sometime Tuesday. No one is making anypromises, but that is what we're all hoping & praying will happen. Since Charley has Wednesday off from work, he could come get us and we'd all be home & togetherthe day before Thanksgiving (and wouldn't that be absolutely perfect??!!).The only bummer of the day has been Joshua's IV site. It keeps getting partially occluded & is already not looking good. The nurses were nervous all day long, thinkingit was going to blow & we'd have to go back to the torture room (ahem, I mean "treatment room") to get another line placed. Since he isn't ready to be off fluids &he's still getting meds through his IV, we really need for the IV to hold until he's ready to be discharged. Would you please join me in saying a prayer (or 2 or 10) thatthe site stays open & working well so that Joshua is spared having to get poked again for the duration of this hospitalization? I know Joshua would be veryappreciative (and so would I)! Thank you!Sign My Guestbook Read TributesFriday, November 21, 2008 9:58 PM, PSTToday was a decent day; there were ups & downs, but overall, things were good. Joshua's up to 3.75 ounces per feed. We've put him back on zofran every 6 hours & that, inaddition to the prilosec & increased erythromycin, seems to be the combination needed to get him out of the cycle of vomiting so often.He was able to sit up at a 60 degree angle for about 5 minutes before getting a headache and he stood with assistance by the side of his bed for about 30seconds before needing to lay down again.He hasn't needed any morphine today, either.On the flip side, he had several tantrums/meltdowns when the world didn't go exactly his way or when it was time for his pain meds and that made thingsvery unpleasant at times.The other bummer of the day was Joshua getting angry & pulling the IV out of his arm, which caused him to bleed all over the place. His tubing had beengetting kinked & thus setting off the alarm, so I tried to straighten out the tubing and that angered Joshua enough to trigger a huge hissy fit. I was sittingbeside him on the bed but not attempting to touch or console him because this was the 6th tantrum of the day & I knew that nothing I did was going tostop it. This behavior is completely out-of-character for him, but is what we're dealing with while we're here. So... anyway... he grabbed the IV tubing andyanked on it, which completely dislodged it and made a huge mess. I admit to feeling annoyed with my child for a few minutes. It took 8 pokes (undersedation) to get that IV & after 48 hours, he pulls it out. Argh! This event took place about 15 minutes ago & now he is facing having to get poked(probably multiple times) while he's awake since he's blown the IV in his foot, as well. The IV team is on their way up & will be here soon. Here's hoping &praying they can access a vein with the first poke.The exit requirements ~ or things that need to happen for Joshua to get discharged ~ are as follows:1. Keep down 22-24 ounces of formula per day. The dietician said Joshua could be released when he's taking in 80% of his daily fluid requirement.2. Be able to sit up without getting a bad headache ("bad" being defined as pain severe enough to require narcotics to deal with it). Since we have a 5hour car trip home, we obviously need Joshua to be able to tolerate being upright in a carseat that long.3. No longer need narcotic pain medication.That's it! He's close to meeting criteria #3 and closing in rapidly on criteria #1. #2 is something that could use some focused prayer to achieve.We were happily surprised to receive a box of books that a friend sent us & I got to spend a little time reading a new book ("A Wrinkle In Time") andforgetting all about the hospital. It was heavenly and probably the best part of my day. :-)Sign My Guestbook Read TributesWednesday, November 19, 2008 9:57 PM, PSTThe pseudomeningocele drainage procedure went well. We didn't get back to our room until a little after 7pm so I couldn't update until now.Joshua is resting comfortably at this time. Jenny said he'll probably have one heckuva headache tonight, but she & Dr. W are hoping he'll start feeling abit better tomorrow and that the corset will enable him to begin sitting up (sloooooooowly) while encouraging the CSF leak to seal itself off.The sedation team was able to put in another IV while Joshua was unconscious (yea!!), so now he has 2 sites that can be accessed. This is reassuringbecause the IV in his foot has been having some occlusion problems and the nurses & I were worried that it would blow & then we'd have the hugeproblem of getting another line in. It took the sedation team 8 tries to get the IV in and they had to settle for the odd location of Joshua's upper arm (justabove his elbow), but I'm happy they were able to get one going at all!Sign My Guestbook Read TributesWednesday, November 19, 2008 9:56 PM, PSTAt 2:30pm (PST), Joshua will be taken downstairs to be sedated & have the pseudomeningocele drained. Afterward, he'll have a compression wrap (a"corset") put on and then we'll come back to his room. He'll have to wear the corset for several months because it will take that long for the csf leak tocompletely resolve/heal. Dr. W, Jenny & I are hopeful that doing the "tap & wrap" (what they call the draining/compression procedure) will stop Joshua'sheadaches, reduce the pain in his back & allow him to start sitting up.On the GI front, he tolerated a 3 ounce feed this morning, which was encouraging. He is NPO right now due to the upcoming procedure, but we'll restarthis feeds this evening and are, again, hopeful that he will not have any setback.I'm feeling better today. Yesterday was extremely frustrating on all fronts and I didn't handle it well. It happens. This morning I was able to have someheart-to-heart discussions with the key doctors & nurses involved in Joshua's care and now I feel as though we're all on the same page again, which helpsa lot. This hospitalization is hard enough without having to feel as though I'm fighting the battle alone. I'm thankful for caring professionals who arewilling to take the time to sit, really listen & then develop a plan of action that is appropriate for my son.It helped, too, that a hospital chaplain came by to visit yesterday & today to talk. I don't know if someone asked him to come by or if God knew I neededa spiritual boost, but he showed up yesterday afternoon and encouraged me to "brain dump" my feelings & thoughts... to let it all out. He mostly listened,asked a few leading questions, and that was it. But then he showed up this morning with some sections from a book he'd done his thesis on in seminary.The book was written by a pediatric oncologist and it evaluates the book of Job. I think he said it's called "Why Me?" Anyhow, I'm going to read what hegave me and then he'll be back tomorrow so we can talk some more. I have to admit that I am really appreciating the spiritual answers this guy is helpingme to figure out. And yeah, I find it "coincidental" that he happened to come by right when I was struggling the most (to me, coincidence is when Godchooses to remain anonymous). :-)Thanks to you ladies for your responses to last night's post. Your words soothed the spot in my heart that was hurting & I appreciate everything you said.Sincerely.Thanks, also, to those of you who continue to pray for Joshua. While I am still hoping that he'll turn the proverbial corner & get out of here soon, Irecognize that what might happen is that he'll make slow steps forward (with perhaps a few steps backward, as well), culminating in a discharge date aweek or longer away. I am comforted to know there are people who are walking beside me (figuratively speaking) and upholding Joshua, me & the rest ofmy family in prayer each step of the way. I'd hug you all if I could!Sign My Guestbook Read TributesTuesday, November 18, 2008 9:55 PM, PSTDr. W (neurosurgeon) is debating taking Joshua back to the OR to drain the CSF leak. If that plus compression (using a corset, which I imagine is different from what ladies used to wear) don't work to seal off the leak, she mayhave to re-open his back and re-suture the dural graft into place.Dr. F (gastroenterologist) is upping Joshua's erythromycin, starting him on prilosec & she supports the current efforts to increase his tolerance for g-tube feeds by 1/4-ounce increments. She also talked about doing a G-J tubeand then, if that is successful, doing a jejunostomy so that we can bypass the whole post-operative feeding problems in the future. Basically, instead of having the button that goes from the skin to thestomach (what Joshua has now), a section of the jejunum (small intestine) would be brought to the skin & a stoma (opening) would be made so a button could be placed and Joshua would be feddirectly into his small intestine, completely bypassing his stomach. If we did that procedure, he would still be able to eat regular food. There are a lot of possible complications associated with a G-Jtube, but Dr. F said the benefit of doing one is that it would tell us if Joshua would be a good candidate for the jejunostomy. The biggest drawback is that complications are common (tube obstruction &displacement) & treatment always requires an endoscopy, which has to be done under sedation & has to be done here in Portland, which is (as you know) 5 hours away from home, which would not bean easy trip to arrange on 10 minutes' notice. I have to do some research on the pros/cons of that procedure and I have to talk to Charley before I can formulate an opinion, much less make adecision.If Joshua's pain continues, Dr. F had some recommendations for medications for that, as well. I'm hoping the pain will dissipate, though. I am extremely reluctant to pump Joshua full of a bunch ofdifferent medications every day. I tolerate it when we're in the hospital for obvious (to me) reasons, but I am hoping we won't have to do it on a regular basis.Oh, and I learned that there is a connection between Ehlers Danlos, gastroparesis & chronic pain. Dr. F said she was going to do some further reading in order to increase her ability to help Joshua (agesture that I appreciate since not all doctors are willing to do that).He's still at 2.75 ounces per feed. We tried 3 ounces & he threw it up about 2.5 hours later, so we backed down. I'll try 3 ounces again in the morning.He'll have a consult with the dietician tomorrow to determine what his caloric needs are and how many ounces he has to take in to meet his minimum fluid requirement (ie: what he'll need to begetting before they'll discharge him from the hospital). In February, that amount was 30 ounces, so I'm guessing it'll be about 32-34 ounces now. We'll see.Um... what else???? I guess that's about it. I could write a big hairy vent about how frustrated I am that each specialist looks at their particular little organ system and is unwilling to look at the biggerpicture & try to figure out how everything is connected, or how discouraged I feel that we're still here and that Joshua is still so miserable, or how I am having a crisis of faith that is very ill-timed, orhow I am struggling with being told that this suffering is Joshua's lot in life, but that would not be very useful & I'm trying to not allow myself to go down that road. However, I'll tell you this: beingtold yet again that "there is something structurally & functionally wrong with Joshua's brain & spinal cord and no matter how often we fix him, he's going to have problems again and there are limits towhat we can do, so you'll have to accept that chronic pain & throwing up & the rest of it is going to be what he lives with," makes me feel sick inside. I can't accept that there's nothing anyone can doto help my child and it's making me feel alternately sad & angry that most of his medical team up here seems to have given up on trying. They have a, "Yeah, this sucks, but Joshua is Joshua & this iswhat he does, so what can you expect?" attitude. I was told today that while I am a fantastic advocate for Joshua, it might be time for me to stop fighting so hard to find answers... that it's good tocontinue asking questions, but that in Joshua's case, an answer may be impossible to find, so learning to accept that this is just the way he is may be easier. Makes me wonder if maybe they're right(the nurses & doctors)... if maybe the best thing I can do is stop trying to understand the "why" and just focus on dealing with the symptoms/issues/problems as they crop up. That totally goes againstmy personality, but maybe it's what I need to do. I don't know. I've reached the point where I don't know anything anymore.Sign My Guestbook Read TributesMonday, November 17, 2008 9:54 PM, PSTJoshua has thrown up any feed larger than 2 ounces. It's being chalked up to "Joshua being Joshua". Seriously. This is what he has done after hard surgeries in the past, so no one is worried that it'shappening, but it's still discouraging (to me, anyhow, since I'd like to go home).His GI doc will be called for a consult today to see if she has any ideas that could get Joshua tolerating feeds again, but if she doesn't have any brilliant insights, then we'll have to do what we've donein the past: slowly increase the volume of feeds as time goes on. It could mean we're going to be here for awhile unless Joshua turns a corner soon.Sign My Guestbook Read TributesSaturday, November 15, 2008 9:54 PM, PSTJenny from neurosurgery came to visit & said Joshua was doing well. Then, before she left, he threw up the 4 ounce feedthat he'd had 4 hours previously to prove her wrong. Any guesses as to why he still had an entire feed, only partiallydigested, in his stomach 4 hours after getting it? Did you answer, "Because he's Joshua?" If so, you win the prize. Seriously,no one knows what's going on aside from remembering that Joshua has done this before (in September, 2007 & February,2008). We can't reach his gastroenterologist until Monday & we don't want the on-call guy who doesn't know Joshua'shistory, so the plan is to give 2-ounce feeds every 4 hours so that he's getting at least a little sustenance and then chat withDr. F on Monday morning.There's rarely a dull moment with this little guy, that's for sureSign My Guestbook Read TributesSaturday, November 15, 2008 9:53 PM, PSTDr. W came by to chat last night. She thinks what's going on is a combination of changes in CSF pressure & volume mixed with Joshua's chiari & tendency to have GI issues post-operatively, whichsounds plausible to me.We're keeping up on his pain medication & pretty much letting Joshua set the pace for how quickly he advances in activity. So far today, he has tentatively rolled himself over a few times and he'scomfortable laying on his side, so that's progress. He has had a 2-ounce feed & a 4-ounce feed without incident, which is also encouraging.He's got some blood leakage, which isn't a big deal, but as he's moving around more, his incision area is getting increasingly puffy, which would indicate there's some CSF leaking through the graft.The nurses are keeping a close watch on how things progress & will alert neurosurgery if it becomes necessary.I'm tired and wishing we'd stop getting new roommates (we're on our 3rd already) right around midnight every night. It's insane how LOUD the doctors & nurses are when they're admitting someone.It's like they are oblivious to the fact that behind the curtain that separates the two halves of the room is another child & their parent who might actually be trying to sleep! Very frustrating!! And thenthe every-4-hours neuro & vitals checks & every-2-hours medication-administration & my having to get up to cath Joshua every 3 hours around the clock pretty much kills any chance of getting adecent chunk of sleep. So... yawn... I'm dragging now.Adam is holding up well (he gets to sleep at the Ronald McDonald House without interruption) and is a great help with Joshua. I'm glad to have his company here and Joshua lights up with a big "HIIIIIADAM!" when he sees his big brother walk through the door, which always makes me smile.I'm guessing we'll get out of here in another day or two. Joshua has to show that he can keep down enough fluid to meet his minimum daily requirement (so he doesn't wind up dehydrated), but as soon as he gets there & is offof narcotics (ie: has pain managed with Tylenol with codeine alone), they'll discharge him. I hope it happens sooner than later, as I'm ready to go home.Sign My Guestbook Read TributesFriday, November 14, 2008 9:52 PM, PSTIn typical Joshua fashion, he's doing his "2 steps forward; 1 step back" dance toward recovery.Last night, he began vomiting and complaining of a headache. He became very sensitive to the light, too. This has continued into today and hasn't improved yet. His doctors aren't worried at this time& neither am I because these symptoms are not out of the ordinary for Joshua post-operatively. We're keeping him laying flat, giving morphine & Tylenol w/codeine as needed plus Toradol every 4hours and not feeding him anything. If we don't see a turnaround within 24 hours, the plan of action will change.Sign My Guestbook Read TributesWednesday, November 12, 2008 9:51 PM, PSTDr. W changed her mind at the last minute about doing the procedure as planned, but I have to believe that Godorchestrated that change because Joshua is moving both legs AND he is fully detethered for the first time in his life!!!!!When Dr. W came out of surgery, she showed me a picture of the bottom of Joshua's spinal cord and said she'd gotten himas detethered on the right side as he's ever been and that no nerve roots had been severed. I asked how the left side hadlooked ('cuz remember, she had said she had a hard time believing he could retether in under 6 months) and she admittedhe'd had some scarring there, too, but quickly added that it wasn't a large amount or deeply attached yet.Later, when we'd gotten Joshua up to his room on the pediatric floor, Dr. W's assistant, Jenny, came in because she said shehad to tell me what had happened. She said that there had been a palpable presence in the operating room today when Dr.W was working on Joshua and that she'd seen Dr. W do some amazing things over the years, but what she witnessed todaywas beyond incredible. Jenny reminded me how Dr. W hadn't been able to touch the right side of Joshua's cord in Maybecause she couldn't access the scar tissue at all to remove it and that's how she knew she'd have to paralyze him to get itdetethered. However, today, "for some reason", suddenly Dr. W was able to lift the cord enough to get to the scar tissue inthe areas that haven't been able to be touched since Joshua was born. She could visualize all of the nerve roots as they hungdown, surrounded by scar tissue, and she was able to painstakingly remove the scar tissue from each of those nerves. Jennysaid it was amazing to watch and that everyone in the room KNEW there was something there... she thought maybe it wasangels. I smiled and told her, "It was God," and I told her how there were literally hundreds of people praying for Joshuatoday. She said she didn't doubt it because it was obvious there was a definite presence in the room and the fact that Dr. Whad been able to fully detether Joshua's cord without touching one nerve root was no less than a miracle.For the first time in his life, Joshua's spinal cord is free from scar tissue & lipoma and he's still able to move both of his legs.We don't yet know the status of his sensation & function because he's too drugged up. And as for his pain level, it'snonexistent right now thanks to morphine & fentanyl, but even though Dr. W & Jenny warned that he may still have pain, Iam choosing to believe that once Joshua is off pain meds, we're going to find that he's not hurting at all because I can'tbelieve God would answer our prayers of fully detethering Joshua while sparing him of paralysis but not remove the chronicpain.I admit that I was feeling guilty & ashamed of my lack of faith, but when I was asking Him to forgive me, He gave me a deepsense of peace. I realize now that even though Dr. W thought she was doing things her way, God had orchestrated the entireday and everything played out exactly as He intended.Jenny said the operation was a miracle & beyond incredible.Tonight I am looking at my son, thanking God for His miracle of answered prayer, and feeling incredibly blessed. Thanks toeveryone who has prayed for Joshua. Thank you for being a part of the miracle my son received today. To see him move hisright leg tonight fills me with a joy I can't describe. And to know that he was able to be fully detethered without beingparalyzed ~ despite that being "impossible, barring a miracle" (to quote Dr. W) ~ fills me with a humble gratitude that theGod of the Universe chose to bestow upon Joshua that exact miracle.Sign My Guestbook Read TributesFriday, November 7, 2008 9:51 PM, PSTWe'll be leaving on Tuesday (the 11th) to head up north. It's a 5 hour drive & I'm praying for decent weather for our travel.Dr. W's P.A. called yesterday to chat about details of the surgery. I asked how long she & Dr. W expected it to take and she said it could be 4 hours or 6 to 8 hours or even longer, depending on whatthey find when they open him up. I think he's their only surgery for the day, which would indicate that they're not expecting it to be quick. I'll have my laptop with me and if I can get internet access inthe basement of the hospital (where the surgical waiting area is located), I'll post updates as we get them. If not, then I'll post an update after surgery when Joshua is comfortably sedated in PICU.I don't know how long we'll be in Portland. Could be as short as 3 days or it could be a lot longer. It depends on how Joshua does post-operatively. He's only had 1 uncomplicated recovery thus far, butmaybe he'll make it 2 this go-round. I really hope we're not up there for longer than a week, but we'll see how it goes.He's having a lot more chiari symptoms and is throwing up very frequently throughout the day & night. His pain varies from mild to severe, but is always worse at night. Good thing sleep is over-rated,huh? (Yawn!) Although I'm extremely nervous about this surgery, I'm about as ready as I can get (psychologically) and now I just want to get it over with so that Joshua can be out of pain. I know it'snot guaranteed to remove his pain forever, but at the very least, he'll get several days of good narcotics to give him some relief and that will be a welcome reprieve.Sign My Guestbook Read TributesTuesday, November 4, 2008 9:50 PM, PSTI realized tonight that I haven't posted anything for almost a week (gasp!) and my best friend told me I should share the story of what happened on Halloween.We took the kids out trick-or-treating and Joshua had a great time. He saw people dressed up in scary costumes & I thought he might get frightened, but nope, nothing fazed him at all, not even thehouse with a strobe light & fake smoke & monsters coming out of coffins & scary music. But then we saw a teenage boy dressed up in blue surgical scrubs & a doctor's mask walking our way. Charley& I didn't think anything of him until we noticed that Joshua had grabbed ahold of his wheelchair wheels and was absolutely refusing to go forward another inch. He'd seen that "doctor" and was notgoing to get any closer if he could help it! We had to wait until the kid passed by us before Joshua was willing to start moving again.It was kind of funny, but mostly it was sad & such a testament to how much the medical care Joshua has required in his short life has affected his psyche. He's a tough little guy, but he's not immuneto being scared... and he's smart enough to recognize that it's those pesky surgeons he wants to avoid! :-)Of course, that makes knowing that we'll be heading to Portland to visit our favorite "pesky neurosurgeon" in just 6 days a bit more difficult. Again I ask those of you who read this & pray, please askGod to protect Joshua's mental health through this next surgery (in addition to prayers for a full detethering that results in Joshua being pain-free and still able to move his legs). The older he gets, themore he is aware of & he is a smart little guy who figures out what's going on & gets sad about it. My heart aches at the thought of putting him through another operation, especially when theoutcome could be less-than ideal, and I know that Joshua needs all the prayer coverage & support he can get this time around.Sign My Guestbook Read TributesThursday, October 30, 2008 9:49 PM, PDTI met with the PT & representative from the medical supply company this afternoon to get Joshua measured for his wheelchair and to discuss all of the specifications for what he'll need. The roughestimate for delivery of the chair is 6 weeks, so if all goes well, Joshua will have his first set of non-loaner wheels by Christmas.He's getting a red Quickie Zippie. I can't wait for him to have a chair that is built especially for him and fits him well. I think he'll be so much more comfortable & I'm betting he's going to be able to goa lot faster, too, which should allow him to keep up with his siblings better and I know he'll like that.Of course I'll post a picture once we get it. I'm praying that there aren't any snafu's that get in the way and delay delivery. I'd like Joshua to have his own chair as soon as possible after his surgery.Sign My Guestbook Read TributesTuesday, October 28, 2008 9:49 PM, PDTJoshua learned to peddle a trike yesterday ~ his 9 year old sister, Emily, taught him how. He was quite pleased with his new skill and it was one more fun thing to videotape just in case he's unable todo it again after November 12thWe've been doing a lot of videotaping lately, actually. Each of the older kids (Megan, Adam & Emily) understands what the potential for paralysis means for Joshua, so they've been keeping the cameraclose at hand to catch moments where their brother is doing things that he won't be able to do if he becomes paralyzed during the surgery. It's both sweet & sad at the same time, but I'm glad we'regetting lots of video footage. If the paralysis occurs (I figure I should say "if" instead of "when" because God could decide He doesn't agree with Dr. W's prognosis & give us a miracle), it will be greatto have videos showing a time when Joshua was able to walk & "run" & climb & peddle a trike & do all the things he can do with 2 able legs. I think he'll like being able to watch them someday, as well.Something very odd that we noticed a few days ago is that the skin along Joshua's spinal scar has "caved in". The skin on his back had been flat, but now the scar is being pulled inward & he has whatlooks to be a separation of his back muscles on either side of the scar & the skin has fallen inward toward his spine. I'll add a picture to the gallery so you can see what I'm trying to describe. His PT &I are hypothesizing that internal scar tissue is pulling the skin inward, but we don't know for sure what's causing it. We do know it's causing Joshua A LOT of pain. He can't stand to have his lower backrubbed anymore and if anyone touches the scar area, he whines, "Ow!" and tries to slap our hand away. I'm interested in hearing what the neurosurgeon thinks when she sees it in 2 weeks.Sign My Guestbook Read TributesFriday, October 24, 2008 9:48 PM, PDTWe got the placard for handicapped parking today. It's one more tangible expression of the new normal we've got going onaround here.I know it's silly, but realizing that we're now legally allowed to park in handicapped spaces makes me feel a bit dazed. Inever saw this coming.My best friend helped me to find the silver lining, though, by pointing out that come Christmas time, I won't have anyproblems finding a parking spot at the mall or anyplace else. :-) I guess it's a decent perk in light of the circumstances.On another note, Joshua had a doctor's appointment yesterday & he is now 32 pounds! His height laying down was 37.5inches and standing was only 36, but the ped explained that when Joshua is standing, his scoliosis makes him seem shorterthan he is when he's laying flat and can be stretched out straighter. That should have been obvious to me, but I neverthought of it, and now I don't know which measurement to claim as his height if someone asks me how tall he is!We did some informal testing to evaluate Joshua's sensation and found that he doesn't feel superficial pain up to mid-thighnow in his right leg. His calf muscle is a lot smaller than it used to be just 2 months ago & as a result, his brace is fitting a lotmore loosely in the calf area than it's supposed to. The ped's nurse told me I should talk to the guy who made the brace, butI'm thinking that'd be pointless at this stage because if Joshua winds up paralyzed as predicted in 19 days, he's going toneed new braces, anyway, so why bother trying to fix this one now? If it were leaving red marks and therefore had thepotential to cause pressure sores, I'd have been on the phone setting up an appointment already, but since the brace fits fineon Joshua's foot/ankle, I'm going to sit tight and see how things work out on November 12th. If we get a miracle & he is ableto walk out of the hospital, then yeah, I'll get the brace looked at. But if not, then at least I won't have wasted anyone's timefiddling with a brace that isn't going to be used anymore.He's been having daily headaches & is losing his balance & falling more often with each passing day. The past 3 days haveleft him with 3 new lumps on his head (2 in the back & 1 on his forehead) ~ each time, he's been walking when he loses hisbalance & either lunges into a wall (the forehead lump) or falls at an angle, hitting his head on whatever is in his way (theentertainment center for one lump & the coffee table for another). As a result, he pretty much insisted on being carriedeverywhere today when we were inside. I finally got his chair from out of the back of my van and brought it in for him touse. I know the PT would prefer that he not use the chair indoors at this time, but again, in 19 days that may all change, soI'm not going to worry about letting him get accustomed to using his wheels inside the house. It beats having him gettinghurt and my having to worry that he could wind up with a chiari flare-up again since, historically, hitting his head hardenough to bring up a lump has been enough to cause problems (his body is a drama queen & freaks out over minor injuriesby producing mass quantities of internal scar tissue that is totally unnecessary & out of proportion for what's needed). 3lumps in 3 days has me feeling a bit nervous, so I'll do what I can to prevent another fall from occurring. I am hopeful thatthe balance problem & headaches resolve with this surgery. His cord is probably yanking his brain in a downward direction &that has to hurt, so freeing the cord should make his brain feel better, too.Sign My Guestbook Read TributesTuesday, October 21, 2008 9:47 PM, PDTWhy is it that when a woman wants to get pregnant, she sees other pregnant women everywhere she goes, and when you're looking for a particular type of vehicle to buy, you suddenly notice thatexact make/model cruising by every time you leave the house, and when you have a child who is unable to do something that you wish he could do, you continually run into people whose childrenhave mastered that skill and you realize they take it totally for granted?I keep meeting mothers with 2.5 year olds who are potty-training, running, jumping & generally exhausting their parents with their antics. I don't begrudge them their "normal" children (seriously),but I am finding it very difficult to not feel sad when the mom complains about how her little boy is running her ragged or how potty training is going so slowly & she wishes it were over with, already.I want to tell moms like that to be grateful that their kid can run and climb and jump and learn to use the toilet independently. I want to tell them to stop complaining to me about normal childdevelopment because I would give my right arm to allow Joshua the opportunity to do all those things. I don't say anything, though, since the rational part of me recognizes that their frustration islegitimate & it's silly of me to expect them to know how I feel because they have no experience with a less-than-perfectly-developing child.I know Joshua will do amazing things in life ~ he already has ~ and I know that while he may not take the same path as many others, he is far from alone on the road he's traveling. I realize he'sgoing to be okay, but tonight, I still feel sad about what he's facing. There's a part of me that is hopeful that I'll get to look like a fool for writing that he is expected to be paralyzed by this nextsurgery.... I want to be able to write that he's out of surgery & moving both his legs without problems, praise God, and to laugh at myself for getting extra PT set up and for having the scripts for anHKAFO, mobile stander & reverse walker all ready to go. I want to be able to feel a little silly for worrying about something that ultimately didn't come to pass. But because I'm logical & analyticalbefore I get emotional, I have a hard time believing that any outcome other than paralysis is actually a possibility. I can't imagine that the neurosurgeon would tell me that complete loss of sensation &function was guaranteed if she didn't believe it was going to happen, so I don't see the intelligence in getting my hopes up. Then again, I know God is in control here & if He doesn't want Joshuaparalyzed, he won't be, regardless of how anyone else expects things to play out. Sigh... it's hard to explain how I can believe in the idea of something happening, but not really believe it's going tohappen. Suffice to say that I do trust God has a plan. I just struggle with waiting for it to unfold. :-) I wish I could know the outcome of this surgery now.Since I'm wishing, I'll toss out one more completely-irrelevant and can-never-come-true desire: I wish no one had ever told me that lipomyelomeningocele is a mild form of spina bifida and that Joshuawouldn't have any major problems to worry about. Charley & I heard that said by many professionals, as well as friends who'd googled the condition online, when Joshua was first diagnosed. Ofcourse, no one knew Joshua had chiari & a connective tissue disorder, as well, which have obviously complicated things. Still, it would have been easier to get a "worst case scenario" up front becausethen, when things didn't live up to the dire predictions, I could be happy that Joshua was doing so well. Instead, I find myself often feeling as though he's doing so much worse than anyone thoughtcould possibly happen and it makes me worry that even worse things could be lurking down the road for my son. It doesn't help when I read other lipomyelo kids' blogs and see they're having the"mild" outcome that was predicted for Joshua. While I'm genuinely happy for them, it does make me question why God chose such a different path for our family.Sign My Guestbook Read TributesMonday, October 20, 2008 9:47 PM, PDTGot my new laptop today, which means I can now access the internet from home again! Yippee!!! Eventually I'll have to get my PC fixed, but at least I've got this option now, plus I'll be able to keep intouch & post updates when I'm in Portland for Joshua's next surgery.As promised, I'll be uploading a couple pictures of Joshua in his loaner wheelchair. It has provided a great amount of independence for Joshua and I am really pleased that he's taken to this form ofmobility without hesitation.He's having a lot of pain and has spent the past few days in "hold me, Mom" mode... wanting to be cuddled and carried around because his back and legs hurt. He's also been complaining of his headhurting and we're seeing more gagging, choking & vomiting, too. This makes me suspect his brain is being pulled downward, but I fully expect those symptoms to disappear after surgery since therewon't be any more tension on the upper spine once the lower spine is detethered. While I will be glad to get this surgery over with and thus hopefully allow Joshua to be out of pain for a good longtime (forever would be nice, though I don't think that's a realistic wish), I am nervous about the actual operation and the predicted consequences.It helps to know that 2nd & 3rd neurosurgical opinions netted identical results in agreeing that the surgery should be done. Joshua's PTs (he has 2) & pediatrician & pain management specialist alsobelieve this is the right step to take, as do my friends. That helps me, psychologically, so that I don't feel like I'm a horrible mom for consenting to a surgery that is reportedly going to paralyze one ofmy son's legs, but it doesn't make the thought of what is going to happen in 23 days pleasant to contemplate. No matter how many people agree that this is the right path to take, I'm finding thethought of "Is this REALLY the right decision???" popping into my mind periodically throughout the day. Sigh... I don't think I'll feel any less-conflicted until the surgery is over with and there's no goingback.Dr. W is not looking forward to doing the surgery. It was a very difficult choice for her to make in going forward with this procedure and it's not one she ever wanted to do.... paralyzing a childshouldn't be something that has to happen in order to get that child out of pain (and that isn't something that can be guaranteed to happen, even ~ he could still have pain after surgery, too). It isn'ther fault, of course. She didn't create Joshua to overproduce scar tissue or to have a connective tissue disorder ~ God did ~ so I don't hold Dr. W responsible for how my son's body reacts to surgicalprocedures. This time, however, I am hoping for an outcome that will allow Joshua a long break from surgery.To help achieve that goal, we have begun seeing a private PT in addition to the PT Joshua sees through Early Intervention. After Joshua's surgery, she will work with Joshua 3 times per week. We'll getstarted right away after Joshua gets discharged from the hospital because the hope is that she can force the scar tissue that will inevitably re-form to bend and "work with" the activity that Joshuadoes versus pulling against his dura and causing pain and loss of function. Everyone wants to preserve the function in Joshua's left leg/foot, especially if he completely loses the function in his rightone.For those who pray, this is my prayer list that I am asking you to bombard God with:1. For the surgery to get Joshua *completely* out of pain.2. If paralysis has to occur, then I'd like Joshua's right hip muscles to be spared. The PT said that if he kept those muscles, he'd be able to do a lot more, functionally, than if he loses them (such aswalk with a reciprocal ~ right/left/right/left ~ gait).3. For Joshua's psychological wellbeing. For no depression to hit (yes, I was told even a toddler can get depressed after becoming partially paralyzed) and for him to "bounce back" well after surgery.4. For no GI involvement. For those who know Joshua, you know how almost every major surgery has caused him to enter "Vomit Universe" and that complicates his recovery substantially as hismedical team works to get him stabilized again. He didn't have huge vomiting problems after his last partial detethering in May and it's my prayer/hope that he again is blessed with a problem-freerecovery.5. For good pain control. There has been difficulties in the past with keeping Joshua's pain manageable... I pray it isn't a problem this time.For those who don't pray but are willing to think good thoughts for Joshua, I appreciate that very much. I know the surgery is 3 weeks away, but it's foremost on Charley and my minds even now aswe do what we can to prepare for a surgery that has the potential to drastically alter our family's concept of "normal" yet again.Sign My Guestbook Read TributesMonday, October 13, 2008 9:46 PM, PDTSurgery is scheduled for November 12th at 7:30am. Pre-op is November 11th. More details later.Sign My Guestbook Read TributesFriday, October 10, 2008 9:46 PM, PDTJoshua will be having surgery in the next few weeks. I'll find out on Monday what day exactly. I was told it could be the 22nd or 29th of this month, but I'm going to ask if we can do it on November5th, instead, because I've got 6 different appointments between the 22nd & 31st of October for many of the other kids (dentist, David's cast removal, etc) and I'd rather not have to reschedule all ofthose since so much of my time after the surgery is going to be dedicated to rehabilitating Joshua and it'd be a lot easier if I've gotten the other appointments out of the way already.Barring a miracle from God (which I do believe could happen, but I'm still preparing in case it doesn't), Joshua will be paralyzed from the hip down after this next tethered cord surgery. He has scartissue that has grown into his spinal cord in such a way that the neurosurgeon is 100% sure paralysis is inevitable (which is why the surgery has been put off as long as possible). Assuming theneurosurgeon's predicted outcome does occur, Joshua will have to relearn how to walk with the assistance of an HKAFO on his right leg and a walker and he'll use his wheelchair fairly frequently, aswell.God is granting me a lot of peace about this situation, but I'd be lying if I said I didn't have bouts of sadness as I contemplate all that Joshua could potentially lose with this surgery. I've beenvideotaping him walking and doing things that he won't be able to do once his leg is paralyzed so that I can look back and remember the time when he COULD do it. I had a neighbor tell me how shewas having such a difficult time keeping up with her little boy (who is a week older than Joshua) and I had to bite my tongue to not reply, "At least he can move fast enough for you to have to chasehim! Don't take his being able to walk and run for granted... at least not around me." So yeah, I've got some less-than-charitable thoughts running through my head occasionally, but I know I'll getpast it eventually. Overall, I'm okay at this time. Mostly, I just feel sad that in order to help Joshua, we have to wipe out one of his legs.Anyhow, I bought a laptop a few days ago, so I'll be able to post updates from the hospital and that will be a nice change from past hospitalizations when I've had to keep everyone waiting until I wasable to get a few minutes to run down to the computer lab at the hospital or until Joshua got discharged & we got home.I'll post another update after I know the day/time of surgery.Sign My Guestbook Read TributesSaturday, October 4, 2008 9:45 PM, PDTJoshua got his first wheelchair 2 days ago. It's a Quickie Zippie GS, burgundy in color, and super-tiny. He can maneuver it around pretty well already, too. This chair is on loan from our physicaltherapist and will be Joshua's to use until his chair is made (a process that could take a few months). Unfortunately, I can't upload pictures from the library, so I can't show you how cute my little guylooks as he wheels around, but I'll put up a few pictures as soon as my computer gets repaired.There's definitely an adjustment period to getting used to having Joshua using wheels when we go out, but I'm glad we've got the chair now because it's easier to have him in a wheelchair than tohave to carry him everywhere. Also, he LOVES the chair... loves the freedom he has to be able to go where he wants and to look at things from a forward-facing position rather than rear-view, whichhas been the situation for so long. And people have been so sweet ~ they smile and make a nice comment about how cute Joshua is or what a big boy he is. I have to agree, of course; he is adorable!Sign My Guestbook Read TributesTuesday, September 30, 2008 9:45 PM, PDTThe operating system on my computer crashed, so I no longer have a working computer at home. Our local library is open just 4 days each week and has odd hours (for example, it opened today atnoon), and with homeschooling 5 of my 7 kids and having doctor appointments & typical "life" stuff happening, I don't know how often I'll be able to get to the library to post an update. I won't be ableto share pictures at all until my computer is fixed.So...this is just to let you know that while the updates on Joshua may be few & far between for a little while, I will eventually be back online from my house again, so please check back.We're getting a loaner wheelchair from our PT this week and Joshua's chair will be ordered in a few weeks. I'll be glad to have it so we aren't having to carrying Joshua everywhere anymore.He's not throwing up very often anymore, but that's probably because he has stopped eating food. He's getting 5 tube feeds each day and his weight is holding steady.I'm going to be calling Dr. W to let her know about the changes going on with Joshua. We'll see if it makes her decide she wants to move his surgery up or not. I'm not in a big hurry to get it done, butI think I'll breathe easier when it's no longer hanging over our heads. I handle concrete "this is how it is and what we have to deal with" situations much better than hypothetical, "this probably willhappen but we won't know for sure until we do it," situations.In other news, David broke his arm (both ulna & radius) last Friday and got a green cast put on yesterday, which he'll wear for the next 3.5 weeks. He's adjusting well to having the cast, which is arelief. I had wondered if his sensory issues associated with autism would make having a cast very difficult for David, but it's been okay so far.Sorry this is so short, but I have a limited time to be online at the library, so I must go. If anything "major" happens, I'll find a way to get back to the library so I can update the site. And hopefully I'llbe able to get my computer fixed so that I can be online at home again soon.Sign My Guestbook Read TributesTuesday, September 23, 2008 9:44 PM, PDTIt looks like we're going to start the process of getting Joshua a wheelchair. When we were at the doctor's today & everyone saw me carrying Joshua because he refused to walk (when I tried to puthim down, he immediately cried out for me to hold him again & refused to take even one step), I overheard two nurses quietly discussing that it was time to get Joshua a wheelchair to use when heleaves the house. The doctor we saw (not our usual ped, but the back-up who knows Joshua well) agreed. The general consensus is that he'll definitely need a wheelchair after his next surgery and itwould be good if we already have it on hand or if we're already in the process of obtaining one (since it can take awhile), so when I take Joshua to see the PT tomorrow, I'm supposed to ask her aboutsetting up a wheelchair evaluation. I'm not exactly sure what that entails, but I was told it's the first step after the doctor writes the prescription.On one hand, I am glad we're getting this started. I don't want to have to carry Joshua everywhere anymore (he refuses to ride in the stroller, but I don't know if it's because the position he sits inhurts his back or what). However, on the flip side, I feel like I must be dreaming because it doesn't seem possible that my child can be at the point that he needs a wheelchair to help him get around. Imentioned that to the doctor today & he told me that Joshua having EDS & chiari upped the odds of his having a much more-complicated outcome in life than the typical lipomyelo kid. Way to go, mylittle overachiever! :-)Sign My Guestbook Read TributesSunday, September 21, 2008 9:43 PM, PDTJoshua is back to not digesting solid food very well. He's throwing up if he eats anything with texture, but smooth stuff like yogurt or ice cream seems to stay down fairly well, as do his tube feeds. Healso doesn't want to walk much at all anymore. "Hold me, Mom" is what we hear at least 20 times a day. The child who used to HAVE to walk everywhere we went (albeit slowly) now doesn't want towalk from one end of the house to the other, much less all the way to the car from the front door.Dr. Frim's nurse emailed me & said that he is inordinately busy becoming Chief of Neurosurgery & that they are remolding his practice at this time. As such, he is offering to look over Joshua's MRIs &then he'll call Dr. W (our neurosurgeon) to chat with her before giving his opinion. Nothing was said about scheduling an in-office evaluation at this time.It looks like we'll probably have no choice but to wait until Dr. W is ready to do the surgery. I don't agree with her position; I think that since the outcome is going to be the same regardless of whenthe surgery is done, we should just do it & get it over with so that Joshua can (most likely) be out of pain & we can adjust to our "new normal". Unfortunately, my opinion means jack squat comparedto the neurosurgeon's. It's interesting how parents are considered the experts on their child up until the moment their opinion clashes with the doctor's, at which point the doctor becomes all-knowing& the parent's input holds no value.Sign My Guestbook Read TributesFriday, September 12, 2008 9:43 PM, PDTJoshua saw the pain management specialist (Dr. R) this morning. He's now got 2 prescriptions to try & we go back to see thedoctor in 2 months to evaluate how things are going. If his pain isn't under control, we'll do a caudal block, where the doctorwill sedate Joshua & then inject long-lasting pain medication and steroids directly into his spinal canal at the lumbar & sacrallevels. That sounds so painful to me, but he said it usually provides good relief for his patients.He said there are 4 layers in the "pain management algorithm". Layer A is non-invasive and involves topical anesthetic gels(which he said would be useless for Joshua ~ it works better for muscle & joint pain, not nerve pain) and long-acting painpatches (lidocaine ~ lasts for 12 hours ~ which we have a script for). Layer B is pharmaceuticals such as Imipramine (the2nd med he prescribed ~ 10mg pills, take 1-2 an hour before bed to provide pain relief at night when Joshua is not wearingthe lidocaine patch), which are designed to block nerve pain. Layer C is stronger pharmaceuticals that include Neurontin &Topamax. Layer D is invasive and includes procedures such as the caudal block described above. It also includes narcotics(vicodin, codeine, et al) which he won't give to Joshua because of the propensity for developing tolerance/dependance, whichwould mean that when he goes into have surgery & he's given narcotics for pain, the dosage he would get in the hospitalwouldn't work for him because he'd have built up a tolerance by taking narcotics every day (not to mention the addictionfactor).The goal is to buy some time before Joshua has the detethering surgery. Since it's only been 4 months since his last spinalcord surgery, Dr. W does not want to go back in so soon. She doesn't want to take away the function Joshua has in his rightleg. She is being conservative, which I can understand even though I tend to be more aggressive about things (she may beright in taking this approach, so I am going to give her the benefit of the doubt).As a parent, what is important to me is that my son is not suffering every day. I spoke with Jenny (the PA) at length todayafter leaving the pain management specialist's office and she explained the "game plan" that Dr. W wanted to follow. Aftershe explained everything, it made more sense to me than when I was in the office on Tuesday. We will hold off doing surgeryas long as 1) Joshua's pain is being managed adequately by Dr. R and 2) as long as Joshua doesn't lose significant function.When we get to the point that either his pain can't be controlled or he's functionally much-worse than he currently is, thenDr. W will do the detethering & we'll deal with the consequences of the surgery at that time.I am still going to get more opinions from other neurosurgeons to ensure that this is, in fact, the best course of action. If thegeneral consensus is in line with Dr. W's, then I will continue taking Joshua to her for treatment. If the consensus among theother neurosurgeons is vastly different, I will have to consider transferring Joshua's care elsewhere, at least for this nextsurgery. For tonight, however, what I've written above is the current plan.As for David, his brain CINE MRIs showed he has adequate fluid flow around the back of his head, which means that eventhough his chiari is reformed & the cerebellar tonsils are herniated into his spinal canal, they aren't compressing hisbrainstem or blocking the flow of CSF at this time, so we don't need to do anything. Yea!!! And the lumbar CINE wasinconclusive by the radiologist's report, but Dr. W felt there was more movement of the cord than on David's previous MRIdone before his surgery in 2005. Bottom line is that we are supposed to do a "watch & see" with him ~~ if his symptomsimprove, these past 2.5 months will be chalked up to symptoms resulting from a growth spurt (which does happen with TCkids). If his symptoms continue, he'll have to go back to the neurosurgeon for further assessment & possibly anotherdetethering surgery. But at this time, she wants to wait on David, as well.Charley isn't thrilled about Dr. W's assessment of David and thinks we ought to get a 2nd opinion for him, too, so I'm goingto contact Dr. Frim about both boys. David is also scheduled to see the same neuro as Joshua in November & Dr. Bolognesefrom The Chiari Institute is evaluating his MRIs, as well, so we'll have a plethora of neurosurgical opinions to draw from soon.Sign My Guestbook Read TributesSunday, September 7, 2008 9:42 PM, PDTYou know what makes dealing with Joshua's issues the hardest? The fact that he can be going along just fine ~ beautifully, in fact ~ and then WHAMMO!!!! Out of the blue, he begins having trouble.This time, we got a solid month before I got an inkling that a storm was brewing, but I decided to try to ignore the droplets of rain that were sporadically hitting the ground all around me. I tried topretend that, "Oh, he's FINE. I'm sure this isn't going to turn into anything." I tried some reverse psychology: if I praise God for all that is going well with Joshua & I thank Him for all that He has done& is continuing to do, maybe that will keep my child on the "doing well" path. I engaged in positive thinking & refused to dwell on what might be coming 'round the bend.Know what?It didn't work. And today, right in the middle of lunch, the rain began in earnest.Joshua is throwing up everything he eats (which, admittedly, isn't a lot). He's retreating back into his shell ~ withdrawing from life. That's how his pediatrician characterized the change in Joshua'spersonality when she saw him. She said that when he's feeling well, he's this talkative ball of energy & so darn adorable you can't help but smile when you look at him (very accurate description), butwhen his head & back get bad, he withdraws like a little turtle into his shell & it's so sad to watch it happen (once again, a good description).I so desperately wish for an end to this craziness. There has to come a time when Joshua will be good to go for longer than a month, right? And yet, I'm thrilled that we got an entire MONTH of himdoing well because in the past year, the longest stretch he's had where he's not throwing up, having horrible head pain and/or back pain has been 16 days (literally). I want this little guy to know whatlife is like without daily pain or nausea. And, selfishly, I want to be able to enjoy him without having to worry so much about him.Today he started chewing food & then pulling it out of his mouth & placing it on the table. He'd take a bite, chew it up, then take it out of his mouth. He knows that if he swallows, he'll just throw it up,yet he still wanted to taste food. He's one smart little boy, but it almost made me cry to watch him "eating". It is so freaking sad to know he wants to eat, but can't because his body rebels againstsuch basic things as digesting food.I'm hoping today's development is being caused by his tethered cord and not his chiari acting up. I'm already wondering if the neurosurgeon is going to tell me that David will need his chiari revisedalong with a 2nd detethering and to be honest, I don't feel like I could deal with Joshua needing both head & back redone, as well. If you pray, would you please ask God to give my kids a break & togive me whatever it is I need to deal with this yet one more time? I know that isn't eloquent or worded "right", but that's what my heart is crying out for tonight. Obviously I'll do whatever needs to bedone, but I need God to give me an extra measure of grace so I can do what He's called me to do in a way that is pleasing to Him. I'll be honest with you; right now, I'm having a hard time praying &believing that God's listening to a word I say. I know that when I'm feeling this way, I need to turn to God even more, but I'm finding it hard to do.I'm sorry; I really want to say all the right things & be strong & act as though none of this gets me down & I want to praise God in this storm & tell him to "Bring the rain," (like so many other Christianbloggers who apparently have waaaaaaay greater faith than I), but the truth is that I'm exhausted & emotionally spent. I'm sure the devil loves knowing that I'm falling apart at the seams and thosewho dislike me would chortle over my distress ~ oh well.Sigh.I could go on and on complaining & whining, but I know that's not going to get me anywhere and (believe it or not) I don't actually want to get mired down in self-pity. Suffice to say I'm feeling tiredtonight. Tired & dejected as I think of my sons & what they are going through & what is probably in their very-near future... wishing I could do something to make them feel better, and wishing thattheir lives didn't have to be this way. I know in my head that God is still here; He hasn't changed & He who began a good work will see it through to completion. He has plans for all of us, even if wedon't think they make sense. I believe those words, but sometimes knowing the truth doesn't mean it's easy to accept it (for me, anyhow).Sign My Guestbook Read TributesSaturday, September 6, 2008 9:41 PM, PDTSome good news to report! The orthopedist says that we can wait another year on Emily's legs and that there's a chance she won't end upneeding the derotational osteotomies at all! Yippee!!! With surgeries potentially looming for David & Joshua, getting the news that we canwait to do Emily's was extremely exciting.Joshua's appointment went as expected. The orthopedist said his scoliosis is stable at this time but that I shouldn't get too excited becauseodds are his curve will increase as he gets older/bigger. I smiled and replied that today, I'd take the news of a stable curve as good news.Then he grinned & agreed. He didn't think Joshua's achilles heel is tight; his assessment was that the tethered cord was responsible forpulling his foot up a bit, and he seemed fairly confident that once Joshua's cord is detethered, we should see his foot come back into properposition. He did say that if the surgery does result in paralysis of Joshua's right leg, he'll want to see him sooner than 6 months from now.So yea! A good appointment for both kids! I'm relieved and very happy about Emily's good news (as is she) and reassured that Charley & I aremaking the right choices thus far for our kids' medical careSign My Guestbook Read TributesWednesday, August 27, 2008 9:41 PM, PDTI feel like I should post something, but I don't really have anything of interest to say right now.Emily went to the dentist today to get sealants & 2 baby teeth pulled. Most of my kids unfortunately inherited my narrow jaw & big teeth,so we're regulars at the dentist for various children to get teeth removed to make room for their permanent ones, as well as frequenting theorthodontist for appliances like palate expanders prior to getting braces. Nothing exciting, but there ya have it.Tomorrow I get to take Joshua to get x-rays of his back so that Dr. A (orthopedist) can evaluate what's going on with his scoliosis & kyphosis.I don't expect anything newsworthy; it's a yearly evaluation just to keep an eye on things as he grows.Yesterday, Joshua saw the PT. After 45 minutes of activity including walking up & down steps (5 up, 5 down ~ he did this 6 times), squattingto retrieve dropped beanbags and standing on a squishy mat while building a tower with big cloth blocks, my little guy was sweating.Literally. He was thoroughly exhausted from the effort of using his leg muscles so much. The PT made Joshua alternate feet while walkingup the steps and that was extremely difficult for him. He would grab hold of the railing and pull himself up while trying to step up withhis right foot. Alice (PT) said that his right quadricep muscle is very weak and she suspects that is caused by nerve damage to the muscle.She did several exercises with Joshua, including having him sit on a chair & raise his lower leg/foot to pop a bubble while she gently kepther hand on his quad so he couldn't lift his entire leg. After doing it three times (alternating between the right & left legs), Joshua stillwanted to play the game ~ you could see him trying really hard to do it ~ but he couldn't get his foot raised up enough. His left leg wasgoing strong, but his right leg totally petered out. Same thing happened when she was having him pop bubbles with his toes ~ she'd hold herhand in front of his ankle so that he had to lift his forefoot off the ground (pulling his toes back toward his body) and he had no problemsdoing it with his left foot, but couldn't do it with his right foot at all. He did try.... he concentrated hard, but he kept curling his toes underrather than pulling them upward. One time, he did get his big toe to pull up a tiny bit, but that was it. PT said getting the brace was a goodidea because the dorsiflexion (ability to pull your toes upward) is just not coming back after his last surgery.I know that seeing his difficulty and/or inability to do basic things shouldn't make me sad since this is just part of spina bifda, but it does.Alice told me that since Joshua's quadricep is showing signs of weakness (probably due to the tension on his spinal cord from it beingtethered & pulled as he grows), he will probably have more difficulties as he gets bigger. She didn't specify what difficulties she wasthinking of, though I'm guessing Joshua won't have a lot of stamina and he might have difficulty walking for a decent length of time sincethat is already what I see on a regular basis. I know it could be a lot worse ~ last Saturday, we went to a picnic for families who have kidswith SB and one of the girls there was Joshua's age & in a wheelchair ~ but I also know it could be a lot better since I have 6 other kids whocan run, jump, climb, walk fast and kick without hesitation. I know that I have much to be thankful for with Joshua... he's very smart, iscognitively normal, doesn't show any signs of autism and the only delays he has are gross motor related, which isn't the end of the world.But in the interest of honesty, I have to admit that it makes me sad that he can't run & jump & do all the physical stuff that his brothers &sisters can do and I sometimes wonder how I will answer his questions of "Why can't I do that, Mom?" & "Why did God make me this way?"when he gets older.Ah well. I guess there's no need to dwell on things that won't come to pass for awhile yet.On a completely different note, let me extend my warmest "Happy Birthday" wishes to Anne (yesterday) & Jenni (today)!!!!! My two friends,you make 40 look like 25! May God bless you this next year of your lives with happiness, contentment, peace & joy.Sign My Guestbook Read TributesThursday, August 7, 2008 9:40 PM, PDTJoshua hasn't been eating much in the past 3+ days. I don't know why. He just doesn't want anything that we offer him, even though weoffer foods that he's been eating with gusto for the past month. I made him spaghetti for lunch (one of his favorites) & he looked at it andsaid a bit sadly, "No eat." I asked him why he didn't want to eat & he replied, "No eat," again. I told him it was fine if he didn't want to eat,but then I'd have to give him a tubie. He said, "All right," and that was it. So I gave him a 5 ounce tube feed, his first in a month. And itmade me feel really sad. I don't want to go backward.... I want him to stay off tube feeds completely. More than that, however, is mydesire to know why he suddenly isn't interested in eating food. He'll still eat popsicles or ice cream, but he would eat those back when hewas primarily tubefed, too, so that doesn't offer me any great reassurance.He says his back hurts and he lays down so someone can rub it 2-4 times per day. He is waking up at night 3-4 times and wants to nurse, butwhen I refuse, he accepts it without a fuss ~ he will take a drink of milk or water from a cup and go back to sleep in my bed. If he cries outat night, I rub his lower back and that calms him.He threw up twice yesterday without provocation (no choking or any obvious cause). I don't see any other sign of illness, though.*scratching my head* I don't know what's up with my littlest guy. I do hope he'll go back to eating like he was, though, because I have reallyenjoyed life without tube feeds and I've gotten spoiled by being able to serve Joshua a plate of whatever everyone else is eating & let himfeed himself.Sign My Guestbook Read TributesTuesday, July 15, 2008 9:39 PM, PDTJoshua got his new AFO & UCB today. His shoes hadn't come via UPS yet, so that left me scrambling to go buy some after we left the orthotics place (they had no idea when I could expect the shoes toarrive) and I bought the first pair that worked with both of the braces ~ Megan calls them Joshua's "gangster shoes". They do have that look to 'em, what with the graffiti stuff on the sides, but they'llwork.I will admit, there is a teeny-tiny-itsy-bitsy amount of sadness in my heart over Joshua needing to get this brace. When he was a baby and had no gross motor delays, we had hoped that he wouldn'tneed anything more than the UCBs and that maybe someday he wouldn't even need those. It's disappointing to face the reality of decreased function, muscle strength and stamina when Joshua is onlyalmost-2.5 years old.I'm not going to dwell on the negative, however. This is a good thing, a positive step (no pun intended) in the right direction for Joshua and I'm glad we got it for him. Besides, he is already walkingfaster than he ever has (without falling once!) and he didn't want me to take it off during naptime, which makes me think he can feel a difference and he likes it. So I'll swallow my bit of sadness andinstead smile and be proud of how well Joshua is doing. Because really, he's an amazing little boy!Sign My Guestbook Read TributesWednesday, July 9, 2008 9:38 PM, PDTDr. S is back in town, which makes me happier than it probably ought to. But hey, when you see someone as often as we see ourpediatrician, you miss her when she's gone for 5 weeks. :-)Joshua and David saw Dr. S today. Here's the rundown:Joshua is doing AWESOME (but you all knew that already)! He's up to 29lb,13oz, which is just over 2 pounds gained in 6 weeks. He's talkingso much now and every day he adds 6+ new words to his vocabulary. He is stringing 2 and 3 words together all day long and the best partwas when he showed off for Dr. S, telling her "hello" and "miss you" (I missed you) and "I burp!" after he burped (that made her LOL). Hepointed to animals on request, drew a circle & traced a straight line, and generally blew her mind, which had me feeling happier than I'vefelt in a very long time.She agreed with me that yes, Joshua SHOULD be seen by the orthopedist & urologist, but she understood exactly why I didn't want to dealwith making the calls and she gave me official "permission" to not worry about it for now. We're going to just sit back and enjoy this happyperiod with Joshua and let him enjoy being a normal 2.5 year old. I must admit, it IS blissful!!!!!As for David, he's lost 4 pounds in 10 days ~ proof that he doesn't eat much while on the Adderall. After chatting about the situation with hisADHD, Dr. S agreed to cut the dosage in half, so now David will get 5mg twice a day and we'll see how that goes. He can't afford to keeplosing weight (he was 39.9 pounds today).David will have a brain & full spine MRI to evaluate for chiari reformation, cord retethering and/or syringomyelia as soon as we can getthings set up.Sign My Guestbook Read TributesWednesday, June 25, 2008 9:38 PM, PDTMegs saw the endo on Monday. He was a pleasant fellow, but the appointment "wasn't very satisfying", to quote my daughter. The doctorthinks she probably has PCOS (Polycystic Ovarian Syndrome), but he said it's a diagnosis of exclusion. In other words, he has to ruleeverything else out before he can give that particular diagnosis. I figure it's just a fun way to run up a massive bill before he tell us, "Yep,PCOS is what it is."On a completely different note, Sarah has an extra tooth growing in the roof of her mouth. Normally, it wouldn't be an issue to leave itthere, but in the spirit of being one of my kids who can't do things typically, Sarah's tooth is lying vertically ~ upside-down ~ which meansthat as the root grows, the crown of the tooth will be pushed further toward her brain. This could lead to all sorts of problems, the dentistsaid (I guess having a tooth pierce your brain is not something anyone should aim for in life), so Miss Sarah will be seeing an oral surgeon toget that pesky tooth removed. Emily has to get 2 teeth removed, as well, and then she, Sarah & David ALL need to see the orthodontist toget palate expanders. Wheeeeeeee!!!! I told Charley that we'll eventually pay over $35,000 to the orthodontist!!! Think that man is going tolike our family? Yeah, so do I. Sigh. Thank goodness I know God will provide for the kids' needs so I don't have to stress about it.In addition to seeing the dentist, David also saw the pediatrician yesterday. Dr. C (not our usual ped since ours is still out-of-town until nextweek) talked with me while observing David as he busily opened drawers, shredded paper, bounced all over, climbed on & under things,interrupted constantly to utter nonsensical things, etc. Then he smiled at me and said, "You know how sometimes you take your car to themechanic because it's making a funny noise, but as soon as you get it to the shop, the noise stops?" I told him I did. His grin got wider as hewent on, "We're not having that problem today with David, are we?" LOL I laughed and agreed that nope, that definitely wasn't an issue; hewas seeing the David I lived with! He said the severity of David's ADHD (emphasis on the H) combined with his autism made for a verrrrrrrryinteresting little boy (he wasn't being insulting, though). I had to agree with that assessment!Dr. C prescribed Adderall for David to try since Ritalin & Concerta didn't work. While David & I waited at the pharmacy for the script to befilled, I held my little guy (who, incidentally, is up to 43.6 pounds and 47 inches tall at 6.75 years old) to keep him from running amok &touching everything in the aisles and he hummed & made funny noises in a singsong pattern. He wasn't excessively loud, but he waspersistent. When the pharmacy tech called our name and I stepped up to the counter to pay, she said, "I can see why we're giving these tohim!" I chuckled at her understatement.The medication chilled David out very well today and he read 2 Bob Books and wrote letters A through J (upper and lower case), which wasa great accomplishment for him, but since every other medication we've tried has also been fantastic at first, I'm withholding judgment onthis new one until he's been on it for 2-3 weeks. Already, he's having a heckuva time sleeping and that typically is what eventually causes usto stop using a med. When he's sleep-deprived & on stimulant medication, David gets ultra-aggressive and defiant, which makes him fairlyunbearable to be around. However, when he's not medicated, he is so hyperactive and impulsive and stimmy that he's difficult to enjoy atall, much less try to educate. So we have to keep trying to find something that is going to work for him long-term.Joshua is still doing well overall. Eating and drinking more than he gets via g-tube, vomiting infrequently, talking better every day (he said"thank you, mama" and "love you, mama" today, which made me all teary-eyed ~ dang hormones!). I can't complain at all. We're still waitingon his new orthotic and I'm eager to see how much his walking/balance/stamina improves once he gets it (I'm hoping to see a big difference)Sign My Guestbook Read TributesFriday, June 20, 2008 9:37 PM, PDTQuick update: Joshua's bladder function is better than it was pre-surgery and he's back to peeing mostly on his own, with me cathing out theresidual. He still doesn't have good anal tone, which means he has a lot more bowel movements each day than he used to. On the upside,though, at least we aren't dealing with a lot of constipation since stuff doesn't just sit in the bowel. See? There really is a silver lining forevery situation if you look hard enough! ROTFLHis right foot has not regained the ability to flex upward, so he'll be getting a hinged AFO with dorsiflexion assist to help. That should beready to pick up from the orthotics place within a few weeks and I'll share a picture once we have it.There is one thing that Charley, Megan, Adam, Emily & I have all noticed lately and that is Joshua's lack of stamina. Or maybe it's not a lackof stamina, per se, but more that he gets tired quickly because he uses a lot more energy than the average person to get from point A topoint B. Either way, the result is the same: he doesn't walk far or for very long before he's tripping & falling & subsequently wanting to becarried. It's especially noticeable on uneven terrain like a park playground with pea gravel or bark on the ground and also on grass. He doeswell walking around for a little bit and then he just runs out of steam. When that happens, he stumbles a lot, falls frequently, and whenhe's VERY tired, his right leg will flat-out collapse as he bears weight on it, causing him to tumble to the ground.It's hard to watch this happening. Today, Charley and I took everyone to one of the city's bigger parks, which involved a lot of walking.Joshua did well for about 20 minutes and then he just petered out and the falling began. By the time we left the park and had to walkacross the grass to get to the parking lot, his right leg kept giving out under his weight as he'd take a step. He kept getting back up andrefusing to let anyone help him, though, until finally he'd had enough and lifted his arms to me, saying, "Up, Mama." When I picked him up,he dropped his head on my shoulder and left it there. He was completely wiped out.I know that he's only 27.5 months old, but I also know that little kids this age typically go like gangbusters for a lot longer than Joshua iscapable of doing. It makes me wonder if he's going to get stronger as he gets older or if he's always going to tire more-quickly than everyoneelse.Sign My Guestbook Read TributesTuesday, June 10, 2008 9:36 PM, PDTThat was one of the oddest hospitalizations Joshua has had. Up until 1:30pm today, everyone was sure he was going to havehis IV heplocked and we'd be heading to Portland. He was worse this morning than he was yesterday even though he washydrated and his labs were within normal range again. He'd been sleeping for 5 hours and when a doctor or nurse or Adamor I would try to wake him, he'd barely respond and then fall right back to sleep. Very abnormal for him. The light hurt hiseyes and he would scream if someone flipped a switch. He was still vomiting. He refused to sit up (prior to falling asleep) andwouldn't bear any weight on his legs. He held his left arm bent at the elbow, tight against his body, with his hand in a fistand he refused to move it. He was scaring the nurses (and me, as well) with his behavior. But then, right around 1:30pm, hewoke up and had a weird 5-minute screaming/writhing around fit and after that, suddenly got better. He sat up and beganeating french fries that Adam had and after another hour went by, he started talking again and smiling and laughing asthough there'd been no problem for the past 5.5 days. It was beyond bizarre, but the pediatrician and I agreed that we'dtake it, no questions asked. She discharged us at 7:30pm.We've been advised to take him to The Chiari Institute, so this fall will see us flying to New York to see the chiari expertsthere. The big perk of that trip will be having my best friend fly up so that we can spend a few days together in between the2 days of appointments at TCI and then making a quick hop over to Pennsylvania to visit another friend before headinghome. That's something to look forward to, as well as the thought that we might get some answers for my sweet boy.Sign My Guestbook Read TributesMonday, June 9, 2008 9:36 PM, PDTDr. W's PA called. The consensus is that there was either a fluid-gradient change caused by the overnight resolution ofJoshua's pseudomeningocele and that irritated his central nervous system enough to provoke the vomiting/headaches OR it'shis chiari causing problems again. With him being dehydrated, though, it's impossible to know whether the symptoms he ishaving today are caused by dehydration or by something else, so Joshua is going to be admitted to our local hospital for 24hours in order to be rehydrated and then, hopefully, we'll have an answer.If the vomiting and headaches go away after he's rehydrated, then we'll chalk up the past 4 days to the fluid-gradientchange theory. If things continue as they currently are, then we'll head back up to Portland for more brain surgery.I have to have Joshua at the doctor's office in less than an hour so the on-call doc can admit him, so I need to get going. Asalways, prayers would be appreciated. I am so hoping this is going to end without our heading north again.Sign My Guestbook Read TributesMonday, June 9, 2008 9:35 PM, PDTJoshua is still doing badly. He's continued vomiting and is very lethargic today.I've spoken with our pediatrician's nurse (Karen, not to be confused with my best friend Karen, lol) to give an update. As I'vementioned before, Joshua's ped is out-of-town for the month of June and even though there are 6 other doctors in thepractice, only one of them has any familiarity with Joshua at all (and he's seen Joshua just three times). Unfortunately, thatone pediatrician is off today, which leaves us with no doctor who knows jack squat about Joshua. Soooooooo, Nurse Karensaid she thought the best thing to do was wait to hear from up north and see what they think about all of this. She saidJoshua is way beyond anything anyone here locally could help with and he needs his Portland friends for this one.I know today is a surgery day for Dr. W and Jenny, so I don't know if I'll hear from them before tomorrow or not.I'm calling Joshua's nurse case manager for our insurance company to see if they would cover a visit at The Chiari Institutein Great Neck, New York. I just can't accept (gracefully) that this is how Joshua's life is going to go ~ getting a couple ofweeks of good days before the bottom drops out yet again and he is thrust back into a world of pain and needing surgery.There HAS to be something that can be done to stop this vicious cycle and I am going to do everything I can to figure outwhat that "something" is.Sign My Guestbook Read TributesSunday, June 8, 2008 9:34 PM, PDTJoshua is still not doing well. He was up quite a bit last night with obvious discomfort. I asked if his head hurt and he said,"Yeah." But he couldn't (wouldn't?) point to where his owie was, so I don't know if he had a generalized headache or a chiarione.He vomited 8 times in 90 minutes this morning. Then he threw up another 4 times over the next 2 hours. He whined & criedin-between. I asked if his tummy hurt and he said, "Noooo." I asked if his head hurt and he whined out a very pathetic, "Uhyeaaaaaah."I gave him more zofran and some ibuprofin and he settled down & went to sleep (thus allowing me time tocome post a quick blog update).Yesterday, he didn't throw up as often. I backed his feeds from 6 ounces to 4 ounces and he tolerated those all right, so Itried giving him 5 ounces this morning and... well... it was obviously a bad move on my part. His next feed will be back at 4ounces again. It's obviously not ideal and I can't get his daily volume of formula in, but it's better than nothing and at leasthe won't get severely dehydrated.I wish I knew why he stopped tolerating 6 ounces. If he had a virus causing the vomiting, I would expect him to throw upeverything we tried to give him, yet he can keep down 4 ounce feeds. Of course my mind jumps to chiari because, well,we've been down this path 3 times already and each time it has started with increased vomiting, headaches & irritability. Butplease God, it can't be chiari again, can it??? Dr. W was very clear in saying the last time that she cannot keep opening upthe back of Joshua's head every 3 months (what about every 4?). She didn't say what would happen if she had to; it wasjust left hanging, open-ended. I know that I don't want Joshua to have to go through another chiari surgery like he did inFebruary. That one totally sucked for everyone involved.I called our ped's nurse on Friday to give her a 'heads up' that Joshua had started throwing up and I had no idea why (sheunderstood my motive for letting them know ~ it's a "just in case" thing since Joshua is Joshua, after all). After talking withthe doc, she said she'd call on Monday to check how things are going, but if I needed to reach a doctor over the weekend, Iknew what number to call. Unfortunately, our pediatrician is out of the office for the entire month of June, so I have to chatwith a ped who doesn't know Joshua nearly as well.I'm thinking that I'll email Dr. W and let her know what's going on. I might be wrong, but I don't think this is a virus. No oneelse is sick ~ not even so much as a sneeze or a sniffle ~ and Joshua isn't acting sick. He's acting like his head is hurtingtremendously and he's miserable. When he's awake (as he is now, which is why I need to wrap up this post... Adam isholding him as he screams), he only wants to be held in an upright position. That doesn't sound like a virus to me, but dang,I hope I'm wrong.Sign My Guestbook Read TributesFriday, June 6, 2008 9:34 PM, PDTPosting to ask for prayers for Joshua. He is throwing up his feeds again. He's also throwing up at other times during the day.This started yesterday and has continued today. The only time he's bonked his head in the past month was on May 12thwhen his 2 therapists were here. We all were in the backyard and Joshua fell several times, hitting his head one time on thegarden ties that make up our raised flower beds and once on the swing set. He cried both times, but recovered quickly andno one thought anything of it. I still don't know that it was significant, but in light of the re-entrance into Vomit Universe (tmJenni ~ thanks for that gem!), I have to make mention of it since there have not been any other instances where Joshua hashit his head. We've been extremely diligent in trying to prevent that from happening!Maybe he's just coming down with some bug... I can hope, right? He has no fever, no other symptom of being sick, butstill... it beats the alternative of thinking maybe the stinking Chiari is acting up again.Sigh.Please pray this is nothing; just a minor glitch of some sort. And please pray that Joshua will stop throwing up and will goback to tolerating his feeds without incident.Thanks.Sign My Guestbook Read TributesSaturday, May 24, 2008 9:32 PM, PDTAt our hospital, there's a process that occurs with each surgery. First we go to Admitting and get Joshua's paperwork & IDband. Then we walk down the hallway to Short Stay, where he dons hospital garb, gets weighed & has his temperature andblood pressure taken before he gets to go play until his surgeon calls to let the nurses know she's ready for Joshua. Whenthat happens, Joshua gets a dose of Versed & Tylenol through his g-tube and then we head downstairs to the Pre-Op room,where we have a quick chat with the neurosurgeon & anesthesiologist and I can ask any last-minute questions before theanesthesiologist's assistant gently takes Joshua from Adam's arms and carries him to the operating room. As I mentioned inmy last post, I was concerned that Joshua would cry and be scared during the transfer, but this time, he fell asleep inAdam's arms up in Short Stay and didn't wake up until the moment when Adam handed him to the anesthesiology nurse. Helooked up and gave the nurse a quizzical "Who are you?" look before I stroked his hair and told him he was okay... just laydown again. The nurse walked away and Joshua didn't fuss at all. That was a direct answer to prayer and I just kneweverything was going to be okay because God was so obviously THERE.The surgery took just under 4 hours. It was not an ideal outcome because Dr. W was unable to detether the right side ofJoshua's cord. The nerve roots were too wrapped up in lipoma & scar tissue to be safely dealt with. In order to detether thatside, Dr. W would have had to cut through multiple nerves, which would have resulted in permanent loss of function for all ofthe areas that those nerves controlled. That was not something she was willing to do at this time. She told me that she'shopeful that with the left side released, there will be enough loosening of the right side to enable a cessation of symptomsand a return of the function Joshua had lost prior to surgery. So... fingers crossed that happens.He slept for most of the first 24 hours post-surgery. Very UNlike Joshua... but also very nice for me! I'm accustomed tohaving to hold Joshua from the moment he wakes up in recovery and only getting a break when Adam holds him longenough for me to run to the bathroom or down to the RMH to take a quick shower & change clothes. To have Joshua sochilled out and sleeping peacefully was a shock. His nurses (he had 2 assigned to him because he had to be put on the mainfloor since there were no PICU beds available) were surprised, too. No one had seen Joshua behave like a "typical" post-opchild before! LOLOverall, it was a dream hospitalization. Crazy to say that, but it's true! Joshua has never done things "by the book", so tohave surgery on Wednesday and be home by Saturday is nothing less than a miracle in my mind. Dr. W and her P.A. weregiddy each morning & afternoon as they came by to check on Joshua's progress. The GI doc was dumbfounded by Joshua notvomiting even once (not even his typical post-surgery vomit in recovery!) and by his being able to tolerate all of his tubefeeds the day after surgery. The director of pediatrics came by, certain his services would be needed, and was amazed thatJoshua was having absolutely zero complications from his surgery. It felt awesome to be able to smile and say, "He's doinggreat!" when someone would enter our room and ask how Joshua was. Every nurse who knew Joshua came by to check himout ~ they all were skeptical that he was really doing as well as the rumor circulating stated ~ and each one hugged me andcelebrated the enormity of the occasion. If this sounds hokey to you, then you don't have a clue what we (myself, Adam, thenurses & doctors and Joshua) typically go through after he's had surgery. Truly, this hospitalization was a tremendous giftfrom God to Joshua, me,my family & his entire medical team up in Portland and I am utterly grateful things went so wellfrom the moment we drove away on Tuesday morning to the minute we arrived back home this afternoon.As of this evening, Joshua is very sore and mostly wants to be held with his head resting on someone's shoulder. He isgetting tylenol with codeine for his pain, septra for infection-prevention and his usual erythromycin prior to each tube feed toassist with contractions that empty his stomach. He is able to sit up with minimal assistance ~ he typically puts his handsdown on either side of his body to prop himself up ~ and he has walked a couple of times, going as far as 4 feet down thehallway. He's very shaky (to be expected) and prefers to be carried. The steri-strips covering his incision should fall off withinthe next week and he'll see the pediatrician on Thursday for a follow-up to ensure there's no infection or other problems.Thanks to all who prayed over Joshua & the surgery & recovery. God answered in an amazing way, showing once again thatHe is absolutely in control every step of the way!Sign My Guestbook Read TributesWednesday, May 21, 2008 9:32 PM, PDTWe're getting ready to head over to the hospital. Check-in is at 11am. Surgery is schedule to start at 1pm.In addition to prayers for a smooth surgery and successful outcome and all, I have a specific prayer request: please praythat the Versed Joshua is given prior to surgery will take effect and that he will go happily & willingly with theanesthesiologist rather than screaming hysterically for me.The last time Joshua had surgery, the Versed had no effect on him and when it came time for the anesthesiologist to carryhim to the operating room, Joshua was writhing around, screaming for me and crying. It was horrible to watch him lungingfor me as he was carried away.... I would appreciate prayers that God would calm Joshua's spirit and that the sedative wouldwork and that he would be a calm, sleepy, happy little guy when they take him away.Thanks. I'll update when I canSign My Guestbook Read TributesFriday, May 16, 2008 9:31 PM, PDTJoshua's in-office appointment with the neurosurgeon is on Tuesday at 1pm.Surgery is scheduled for Wednesday at 1pm.His renal ultrasound went well & I am assuming the results will be normal. I'll post if I learn anything different.No news for Megan other than the endocrinologist is out of town until Monday, so he won't be able to give us an assessmentor direction for figuring out what's going on until then. 'Course, I won't be around next week, so it's fine that Dr. G won't beaccessible. I can't get things for Megan set up while I'm in the hospital with Joshua, anyhow.Sign My Guestbook Read TributesThursday, May 15, 2008 9:31 PM, PDTJoshua's surgery is tentatively scheduled for next Wednesday. Jenny called and said Dr. W wants to see Joshua in-office onTuesday so she can operate on Wednesday, assuming that there's room on the surgery schedule. Dr. W's assistant will calltomorrow to give me the official schedule of appointment day/time & surgery day/time. I hope that they're able to do it onback-to-back days versus a Friday/Monday split since it reduces the number of days that I have to be gone from home.Tomorrow Joshua will have a renal (kidney) ultrasound to check for urine refluxing from his bladder into his kidneys. I don'tthink it's a concern and even if he does have urinary reflux, we already cath him 4 times a day, so it's not like we'd have todo anything different. Renal ultrasounds are a routine thing for SB kids, but Dr. W said that since it's been awhile sinceJoshua had one and he's having some bladder changes from the tethered cord, she wanted to make sure his kidneys haven'tbeen damaged.As for Megan, her situation is creating a bit more stress for me. She has developed some troubling physical symptomsrecently, so the ped ordered bloodwork last week to check her hormone levels. The labwork came back yesterday showingthat she has a high level of testosterone, so she had adrenal & ovarian ultrasounds today to look for a testosterone-secretingtumor. Both ultrasounds were normal, which was a huge relief. But there is still some underlying cause for her elevatedtestosterone & physical symptoms which needs to be figured out, so I was told the ped would be calling me tomorrow todiscuss the endocrinologist's plan. Fan-freaking-tastic. Can't wait (yes, I'm being facetious). I did some reading online aboutelevated testosterone and what could cause it and nothing sounds very reassuring. The biggest cause is PCOS (polycysticovary syndrome), but Megan's normal ovarian ultrasound rules that out (I think/am assuming). Then there's the possibilityof ovarian or adrenal tumors, which have most likely been ruled out (there are some cell types that don't readily show up onultrasound and thus require a CT scan with contrast to visualize). There's Cushing Syndrome, late-onset adrenal hyperplasiaand... I don't remember what else, though I do remember there was one or two other things. Bottom line is that I'm worriedabout my daughter and the unknowns of this situation scare me. I'm praying that whatever is causing Megan's symptoms isnothing significant and that we get answers quickly.Megan isn't too worried at this point because she doesn't know there's anything to be concerned about. She wants thephysical symptoms dealt with and that's mainly her focus, not the underlying reason for why she's suddenly got thesephysical things to deal with. I don't see any reason to burden her with possibilities... when we learn what's going on, she'll beright there to hear about it, but until then, I'm not going to say anything. And Joshua is oblivious to the surgery looming inhis future, though I know he'll figure out pretty quickly that he's going to the hospital when he sees us driving up to theRonald McDonald House and I'm not looking forward to that.I'm sad that this is happening to my daughter and that my son made it just 3 months before needing another major surgery.And since I'm tired from Joshua barely sleeping the past 2 nights (thanks, Decadron), I find myself feeling more-easilyoverwhelmed by the idea of packing for a potentially-extended stay in Portland yet again while also trying to get thingsorganized/set up for Megan so we can get a diagnosis for her and begin treatment.I'd like to get off the medical merry-go-round, please. I've been riding it for long enough and really, my kids and I are nothaving any fun.Sign My Guestbook Read TributesSunday, May 4, 2008 9:30 PM, PDTJoshua had the upper GI with a water-soluble contrast (not barium) on Friday morning. It was normal. No obstructionwhatsoever, which is both good & bad. It would have been nice to have a definitive answer to the vomiting and a definitecourse of action, but that would have been too easy, I guess. Dr. F (the GI doc) was very disappointed by the test results, asshe'd hoped there would be an obstruction which she then could have removed & thus "fixed" the problem. I suppose sayingshe was bummed that he didn't have an obstruction sounds kind of odd, but it isn't if you understand how challenging Joshuacan be, medically-speaking.One thing we did learn for sure is that Joshua has severe delayed gastric empyting (gastroparesis), so we are going to haveto do continuous feeds at night so that he can get the total amount of formula in that he needs over 24 hours. There's noway we can feed him with just bolus feeds because it takes his stomach too long to empty. We'd been told he had thiscondition during his last hospitalization in Portland, but no one knew to what degree he was affected. I pretty muchsuspected it was bad since Joshua can eat something and then throw it up 12 hours later with the food looking exactly thesame as when he first ate it. Some things just don't digest for him at all, poor kid.The pediatrician wants to put him in the hospital for 4 days/3 nights to work on getting him established in a workable feedingpattern. I'm not really up for that idea right now, though. I agree with what she wants to accomplish ~ Joshua taking enoughounces per day to meet his daily requirements and not throwing up so much and sleeping well at night ~ but I don't honestlybelieve hospitalizing him is the way to go about meeting those goals.To get him over the vomiting, I finally gave him two doses of Zofran just 3 hours apart (rather than 6) since nothing elsewas working. He started keeping formula down on Friday evening and that night, I started giving him a continuous feed of1.5 ounces per hour for 10 hours (I cut a hole in his sleeper right where the legs meet & threaded the tube through there,then taped it in 2 spots down the outside of one leg so that the feel of the tube didn't bother Joshua and it didn't get alltangled up when he was asleep. It's working well so far). He's also getting four bolus feeds of 4.5 ounces each. I'm slowingworking him back up to 6.5 ounces per feed so that then I can drop one bolus feed and give just 3 feeds during the day(totalling 19.5 ounces) and 15 ounces overnight. So far, this plan is working out all right. Joshua has thrown up a few timeseach day, but it's generally a small amount each time. He's back on erythromycin & zofran again, too. Dr. F said heabsolutely needs the erythro to help with gut motility and since he's had bad reactions to the other motility medications, thisis our best bet for him. Eventually I am hoping to wean him off the zofran entirely, but I don't know how realistic that dreamis. I guess it doesn't really matter right now.The neurosurgeon's PA called on Friday and teased me by saying, "I told you we should just put him on the surgery scheduleevery 3 months ~~ May 18th is rapidly approaching!" LOL All joking aside, though, she was as perplexed as me by Joshua'sbehavior and said that his body reacts to pretty much any procedure as though it were a traumatic event, even when it isn't,so maybe the tube being changed triggered this whole mess because something in his brain started freaking out about hisbelly being messed with. While it sounds far-fetched, I agree with her assessment since that is what seems to happen. Littlethings definitely cause BIG reactions in Joshua. We ended our conversation with Jenny saying she & Dr. W are sending all oftheir prayers and good karma and positive thoughts Joshua's way and that she hoped things would turn around, but to lether know either way. I'm relieved that it appears Joshua is not going to need to see Dr. W any time soon.His ankle is healing, as are the wounds on the top of his right foot. We've been instructed by the pediatrician to keep Joshuain shoes ~ high tops ~ whenever he's outside since he lacks enough sensation to recognize when he's hurting himself. This ismore of a challenge than you might think, but hey, ya do what you've got to do, right? So... once his feet are healedcompletely & the stitches removed (this upcoming Friday), Joshua's days of bare feet while outside are over.Sign My Guestbook Read TributesThursday, May 1, 2008 9:29 PM, PDTJoshua got stitches today. Charley & Megan were assembling the little kids' new playset & they had the anchors (to keep theplayset from tipping), which were really sharp, laid out on the ground. Joshua walked by one and sliced his ankle. It wasn't avery deep cut, but the location made it impossible to keep from gaping wide open & the bleeding didn't stop after 20 minutesof direct pressure, so I took him in to get it stitched closed. At least he didn't feel any pain from it... that's the silver lining.I put in calls to the gastroenterologist & neurosurgeon's PA today and had the GI doc call back to say that she is wondering ifthere's some obstruction of the pylorus (the outlet from the stomach to the intestines) ~ either the balloon on the mickeybutton could be getting in the way or perhaps a piece of the old tube broke off and is floating around in his stomach andoccasionally obstructs the pylorus, causing Joshua to vomit. She wants him to have an upper GI with barium through his gtubeto evaluate for gastric outlet obstruction ASAP and then have the results faxed up to her. I don't know if we'll be able toget the test done tomorrow or not, but at least there's a plan of action aside from "try to get enough fluids in him to keephim out of the hospital". I didn't hear from the neurosurgeon's PA, but I know she'll call tomorrow. Today was a surgery day,so she was probably in the OR late and couldn't return calls. I don't know that there's anything she or Dr. W need to do oreven could do, but I want them to have a 'heads up' about what's going on in case it winds up being something they have todeal with (crossing my fingers & praying hard that is not the case).Sign My Guestbook Read TributesWednesday, April 30, 2008 9:29 PM, PDTAfter being off all medications for just over a week and gradually being able to tolerate larger g-tube feeds (he was up to6.67 ounces per feed), Joshua started throwing up again on Monday night and he hasn't stopped yet. We're back to where allhe's getting is pedialyte. Again.On Sunday morning, the little knob of plastic that closes off his button when he's not getting a feed broke off and got lodgedinside his tube. I couldn't get it out and I couldn't give him a tube feed because the formula couldn't get past the obstruction.He needed to have his button removed & a new one put in. Unfortunately, the last time it was done was in December, up inPortland, under general anesthetic due to the complication that had occurred during the previous button change. I've neverchanged the button on my own. I knew in theory how to do it, but since Joshua had the tube not go into his stomach onetime, I was nervous about trying this first change all by myself. So.... I called the ped's office and spoke with the doctor oncall(not our ped), but she had no idea how to change out a mickey button. I called the ER and they said they didn't haveanyone who was familiar with the procedure (??? how is that possible ???). I called our ped's nurse at home, but she hadjust left for church, so then I drove to the church and asked her there if she could help me do it.She wasn't comfortable trying to change it out for the same reason I wasn't ~ fear that the button wouldn't go where itbelonged (having had it happen once & lead to emergency abdominal surgery, I don't think I'll ever take for granted that theprocedure of changing the button is supposed to be a simple one). It was decided that I should do my best to keep Joshuahydrated with oral liquids and nursing, and he'd come into the office on Monday morning to have Dr. S do the switcheroo ofthe buttons.After getting his button changed (yep, it went smoothly), Joshua got a 6.67 ounce feed right away and was fine. As the dayprogressed, he got 3 more feeds and they all were taken without incident. But during his last feed of the day, after about 2ounces, he started throwing up and he continued vomiting all night long. I was up with him until 3:30am. He continuedthrowing up everything he drank or got via g-tube (pedialyte, formula, Zofran to try to control the nausea) until about 6pm,when he started tolerating 1/2 ounce of pedialyte every half-hour. At 8pm, I gave him 1 ounce of his formula and he keptthat down, so at 9pm I gave him another ounce and he didn't throw that up, either. At 10pm, he was asleep, so I hookedhim up to a continuous feed of formula dripping in at a very slow 1 ounce per hour. I gave him 4 ounces, total, and he didn'tthrow up. I thought we were over the hump and went to bed happy.I woke up less happy because Joshua was throwing up on me and in my bed. He's spent today again throwing up everythingexcept the occasional tiny amount of pedialyte. I backed him down to 1/2 ounce every 1/2 hour again and he's kept downprobably 50% of what he's been given. He's gotten 3 doses of Zofran today, too, but it doesn't seem to be doing squat forhim. Right now he is sleeping and getting a continuous feed of pedialyte (1 ounce per hour). I'm hoping to get 6 ounces intohim.The pediatrician doesn't know why this is happening. The gastroenterologist is stumped. The neurosurgeon hasn't yet beencontacted, but I'm thinking about giving her a call tomorrow to see if she has any thoughts. Joshua hasn't hit his head at all~ there's been no injury that would make me think, "Uh oh... hope that doesn't cause a problem with his chiari." My friendwondered if maybe, since Joshua overproduces scar tissue, maybe his body has produced enough so that it's blocking theflow of CSF just enough to cause the vomiting. I honestly don't know. I guess it's plausible, but I sure hope it's not what ishappening because Dr. W was very clear in saying that she can't keep going in to clean out the scar tissue and reestablishflow of CSF every 3 months without it potentially causing some major problems (death being one of them).I wish I knew why this was happening. He was doing so well ~ hardly throwing up at all each day and being happy andtalking more and playing LOTS ~ so what happened to throw him backward 3 steps???? Also, how am I supposed to get himto stop throwing up when he's not ill? Yes, we're absolutely sure he's not sick. He has no fever, no diarrhea, no excessivesleeping, no snotty nose, no cough... there is zero sign or symptom of any kind of illness. It'd be easier if there were,because then we could say, "Oh, okay, he'll get better once this virus runs its course." Instead, we're left scratching ourheads in bewilderment, not knowing what step to take next.I know lots of you pray for Joshua even without my asking you to, but I am specifically requesting prayer for him tonight.Please pray not only for Joshua, but for God to grant me the wisdom to figure out what is happening to cause him to throwup AND to know what should be done to stop it and to get him back on-track again. If we (the medical team & myself) aremissing something, I ask that God would open our eyes to see so that we might help Joshua. And above all, I pray for God tobring healing to Joshua's body and to protect his spirit as he endures so much.I admit, I am feeling quite demoralized tonight. I wrote just last Friday how Joshua was doing really well and then this rollercoaster dips down again. It feels like this never ends.... like he's doing great for 2 weeks to 2 months and then bam!Something happens and he's shoved back 3 steps again. I'm sad for my son and how lousy he feels so much of the time. A2-year old's life should be happy & carefree, not filled with medical procedures and surgeries and hospitalizations and nauseaand vomiting and pain. I'm sad for me, too, because this journey with Joshua has wiped me out emotionally and drained mephysically. I have learned to truly enjoy every little thing he does and to cherish every smile and giggle and "mama" that hespeaks and for that, I'm grateful (just 'cuz I think it's cool to be in a place where I don't take it for granted). Not everythingassociated with Joshua is depressing or anxiety-filled. But it's tough. Really tough, actually, and I desperately long for God toallow Joshua to get to a stable place, medically-speaking, and then to STAY THERE for a good long time. That would benefiteveryone in my family, especially Joshua and me.Sign My Guestbook Read TributesFriday, April 25, 2008 9:28 PM, PDTTime for a happy update on life!Joshua hasn't needed any Zofran or Erythromycin all week and he's now tolerating 6.5 ounce tube feeds, too. Yippee!!!!!Every 3-4 days, I am upping his feeds by 5ml (1/3 of an ounce) and it appears to be working to stretch his stomach slowlyenough that his brain doesn't trigger his vomiting response. I cannot even remotely express my elation & joy at thisprogress. To have Joshua not throwing up repeatedly all day long (he's vomited 0-2 times per day this past week) isheavenly. To not have to watch the clock and be giving him medication every couple of hours is bliss. I am astounded at howwell he's doing on the GI front and I am so thankful that God is giving us a reprieve. No one can explain why Joshua issuddenly not having problems tolerating his feeds or why he's not nauseated anymore, but I don't really need to know thereason. Isn't it interesting how, when things are going well, I don't care to know WHY, but when there's a problem, Iabsolutely want to know why it's happening? LOL I guess it's the old "don't look a gift horse in the mouth" philosophy atwork in my mind. Regardless of the reason, I'm completely over the moon with happiness at having a little boy who is notmiserable 95% of the time these days. And having been at such a "low" with him these past few months, I'm rejoicing at the"high" we're currently enjoying.Sign My Guestbook Read TributesSunday, April 13, 2008 9:27 PM, PDTWe're home again. This time, we were at our local hospital, not up in Portland, and the experience was quite different fromwhat I'm accustomed to.Friday was a decent day with regards to the nursing staff & how smoothly things went. Unfortunately, the nurses here intown, though they have reputations for being great at placing IVs, had as much difficulty with Joshua as the nurses & docs inPortland. After the 4th stick, I requested a break so I could hold Joshua and calm him ~ being wrapped up like a mummy &held down by me & another adult was fairly distressing to him, naturally. While I was cuddling him, one of the nurses (therewere 3 trying to get the IV started) noticed a decent vein running down the middle of Joshua's forehead and I asked, "Whydon't you put in there, then?" She said they could, but then he'd have 2 hands free to pull it out. I told her I could guaranteeit wouldn't get pulled out ~ that Adam & I were very experienced at keeping Joshua's hands away from his IV site. After aminute to think about it, the nurses agreed to give it a try and it took only a few minutes before the IV was successfully inplace. It didn't look pretty, but by that point, I didn't care. I just wanted my little boy to not be poked anymore. He touchedit a few times but never tried to yank it out.On Saturday morning, our pediatrician's partner, who was the on-call doctor for the day, came by to see Joshua. He chattedfor just a few minutes, telling me that Dr. S would be coming by at 10:30am and she'd let me know what the plan for theday was. Unfortunately, that didn't happen. Dr. S was in the hospital at 10:30 ~ I saw her sitting at the nurses' station amere 20 feet from our room ~ but she never came in to check on Joshua, which was a disappointment to me. I can onlysurmise that she thought Dr. C had thoroughly discussed the day's plan with me and therefore, she didn't see the necessityof checking on Joshua, herself. I can't imagine that she blew him off deliberately because she's just not like that. It had tohave been a miscommunication.Anyhow, the nurse that we had from 7am to 7pm was useless. She forgot Joshua's zofran and I had to specifically ask for itand then she acted surprised that I would think he gets zofran and told me she had to go check because she didn't think hewas getting that (she came back with the medication a few minutes later and said that she hadn't seen the order in hischart). She didn't check on him except a couple of times her entire shift. She didn't weigh him even though it was a writtenorder to do so each day. She was supposed to change the dressing on his foot and did so without putting new antibioticcream on it and she wrapped it in such a lousy manner that his toes were poking out and parts of the wounds weren'tcovered (I rewrapped it after she left the room). But the topper, for me, was that she had no idea what the plan foradvancing Joshua's feeds was. She asked, "Didn't the doctor tell you?" Uh... nope. The doctor who saw us for 3 minutes toldme that Joshua's primary care physician would be in to see him, but she never came. I asked if there were orders written inJoshua's chart. "No." That blew my mind. Seriously. A child is in the hospital and no physician has formulated a plan of carefor him? And the nurse assigned to this child doesn't see that there is no plan of care and decide to contact the doctor to findout what's going on, but instead decides that must mean she doesn't need to do anything for the child during her shift?Yeah, that's brilliant.At 1pm, I increased Joshua's feeds from 1 ounce per hour to 1.5 ounces per hour. At 4pm, I called my pediatrician's officeand told the on-call nurse that my son was inpatient at the hospital and I needed her to contact Dr. C for me so that I couldfind out when he thought my son's feeds should be advanced and at what rate and so that I could learn what goal my sonhad to reach in order to be discharged. I was asked, "Aren't there any nurses there who can help you?" I told her honestly,"Nope. No one here has a clue what is going on with Joshua, so they've opted to do next-to-nothing for him all day." She toldme she'd call Dr. C and have him get in touch with the hospital. I thanked her and hung up and waited.About 15 minutes went by before Joshua's nurse came into the room and asked me, "How much is he getting fed? 1 ounceper hour, right?" I told her, "No, I upped it to 1.5 ounces per hour at 1pm, so he's been getting more for over 3 hours now."She said, "Oh, I didn't know that." I answered, "If you came in here to check on Joshua, you would." She then told me thatshe was currently talking with Dr. C about Joshua and I told her, "I know. I called his office to ask what the gameplan wasfor Joshua and was told he'd be calling to talk to you." She looked completely shocked and then turned and left withoutsaying more. LOLAnother 5 minutes went by before my phone rang & it was Dr. C, asking me what I thought we should do. I am not joking.He had no plan in mind. No idea how to advance Joshua's feeds or what to do to get him tolerating feeds without vomiting.So he flat-out asked, "What do you think we should do?" Because I actually like Dr. C and can't really blame him for notbeing completely up-to-speed on the complexities of Joshua, I was polite when I told him I thought we should turn off thecontinuous feeds and IV fluids, wait 60-90 minutes & then check residuals (where I attach an empty syringe to Joshua'sgtube and pull back on the plunger to see how much stuff comes out) and if there was less than a half-ounce, give a 3-ouncefeed and then, if Joshua kept it down for an hour, we could be discharged and then advance his feeds at home. I told himthat Joshua was fully hydrated, so he didn't need to be on an IV anymore. He agreed with that. And then I told him that Ihave all of Joshua's medications at home, along with his gtube supplies, and there wasn't any need for us to stay at thehospital if no one there had any idea what to do to care for him. He agreed with that, as well. Then he said that I shouldfollow my own plan and if Joshua kept the 3 ounce feed down, he'd discharge us. So... J did, and Dr. C signed the papers forus to leave.Joshua is still throwing up, but it's usually because he has a coughing spasm that leads to vomiting and that's "acceptable"since he still has a cold. It's not as often or as profuse as the vomiting he was doing in the days leading up to hishospitalization, either, so I'm not worried. If he continues to throw up even after he's over this virus, that will concern me,but I'm going to think positively and believe he'll be fine once he's not sick anymore.I don't know if the ineptitude we experienced at the hospital was due to it being a weekend or what, but it was definitely adisappointment. I admit, I'm used to being at the children's hospital in Portland where the care is wonderful, but the ped anda friend had told me that the local hospital was really good with kids and that the nurses there were fantastic, so I had highexpectations. Yes, the nurses we had on Friday and overnights were very good. But dang, the day nurses on the weekendwere pathetic. I'd hate to have had a seriously-ill child there while they were working! And the miscommunication betweenmy primary-care pediatrician and her partner was surprising, as well. She doesn't normally "drop the ball", so it's a completeshock when it happens. I'm not mad about it... I realize she's human and bound to make mistakes. And it wasn't like Joshuawas critically ill. If that had been the case, I wouldn't be so blase about the whole thing.Anyhow, bottom line is that Joshua's hydrated, we're home, and hopefully he's going to kick this virus soon so that he canstop throwing up altogether & start regaining the weight he lost.Sign My Guestbook Read TributesFriday, April 11, 2008 9:26 PM, PDTHi everyone. This is Megan. My mom, Joshua and Adam are at the hospital right now. My mom is unable to access acomputer at this time, so I asked her if she would let me blog for her to let you all know what's going on, so please overlookany spelling or grammar errors! =DJoshua is severely dehydrated and now has an IV going into the middle of his forehead (after four failed attemps in the foot).My mom says he looks like a unicorn. He had an X-ray done on his chest to check for pneumona and another one on his foot(they're checking for broken bones from his accident with the scooter car yesterday). My mom told me that the doctorssuspect they will be there for a few days. Joshua is not very happy about being in the hospital again, but he's not screamingor crying at this point and is spending most of his time right now on Adam's shoulder (he's not happy with mom right now ~she held him while the doctors poked him; now, he won't let her hold him at all). My mom would have sounded ok on thephone if she were talking to a stranger, but I can tell she is really tired and REALLY doesn't want to be doing this again. Ialso know that despite her personal feelings regarding this hospitalization (can I call it that even though he's not havingsurgery?) she will rise to the challenge just like she always does. She truly is an amazing woman, imo.Things are fine here. My dad has two days off (today and tomorrow), so I don't have to babysit yet. Isaac is still not feelingwell and he now has an ear infection. My mom took him to the ped with Joshua this morning and got him some medicationfor his ear, so we're good there. Sarah is feeling better, although she still continues to vomit occasionally. All the kids seemto be ok with mommy being gone for now. I don't think they yet realize that she won't be home for a few days. I'm certainlynot going to be the one to break the news to them! LOLThank you for your prayers and for caring enough about my family to read. It means a lot to us and we know your supporthelps.~ MeganSign My Guestbook Read TributesWednesday, April 9, 2008 9:25 PM, PDTOkay, so I was overconfident & spoke too soon. Joshua started throwing up a lot late this afternoon and has now vomited onevery bath towel we own (so yeah, I'm doing laundry). As of 7:30pm, the ped said that I need to try to get Joshua keepingdown 2 ounces per hour, minimum, by Friday morning, or she's admitting him. She doesn't work tomorrow, so she'll callFriday a.m. to see how things are going. I told her I hoped he'd be over it by then. She said that'd be nice, but Joshua hassuch a sensitive stomach compared to my other kids that she wasn't sure that would be the case.Aside from the frequent up-chucking and the equally-as-frequent demands to nurse, he seems to be fine. He's more grouchythan usual, but he's also still playing and laughing. So... really... I think he's okay (overall). The puking is annoying, though.On another front, Adam accidentally knocked out David's front tooth. Picture this: it's 7:45pm and I've just hung up thephone after the ped called to check on Joshua. Adam is sitting at the computer and Joshua wanders over, wanting to sit onhis big brother's lap. Not 2 minutes after picking him up, Adam gets thrown up on and yelps, "Where's a towel?" As I'mgetting out of the recliner to help him, I tell Adam the towel is on the floor beside him. David hears this and decides to behelpful (side note: WTG David!) by getting the towel for Adam. So David is crawling forward right as Adam's hand is swingingdown to grab the towel and BAM!!! He backhanded David.So then Joshua is crying and barfing, David is screaming and bleeding and Megan & Emily are yelling at everyone to shut upbecause American Idol Gives Back is on and it's a show we've been anticipating watching and all of the boys' noise is makingit impossible to hear anything! Wheeeee.... can you just imagine the scene? Yeah, it was great.Sign My Guestbook Read TributesWednesday, April 9, 2008 9:25 PM, PDTTold ya I would jinx myself. Joshua started throwing up yesterday morning (I woke up to him vomiting on me. Great start tothe day! LOL) and hasn't kept anything down since then, including his medications.His urine output is almost down to nothing ~ just 4 ounces total in the past 30+ hours. His weight is down 10 ounces as ofthis afternoon. The ped wanted me to start giving Joshua 1/2 ounce of pedialyte every 30 minutes, saying that if he can'tkeep it down, she's going to admit him to the hospital.I'm not worried that he'll actually wind up in the hospital. He's been holding down the pedialyte for the last hour and he isn'tacting sick at all. It's difficult to believe there's anything truly worrisome going on when the child in question is playing andchattering and behaving almost like normal. The only thing that makes me know Joshua isn't feeling 100% well is that he'ssleepier (taking more catnaps) and wanting to nurse more often. Aside from that, he seems fine. I have to call the ped at4:30 to let her know how he's doing. My guess at this point is that since Joshua is keeping the tiny bits of pedialyte down,she'll tell me to continue giving him that and then see if he's feeling better tomorrow. Of course, that'll make for a tiringevening for me, but it beats admitting him to the hospital and having them turn Joshua into a pincushion as they try toaccess a vein for an IV. I'll do anything to avoid THAT particular scenario.I wanted to blog about this little blip with Joshua just to highlight how crazy it is for me to EVER comment about how thingsare going along really well. It's like a Murphy's Law thing for my family or something! LOL Seriously though, this is absolutelynot a big deal whatsoever and Joshua's going to be fine. Emily, Sarah & Isaac were over the pukey part of this bug in 12hours, so even though Joshua's hanging on to it for a bit longer, I am confident he'll turn the corner soon, probably in thenext 24 hours, and then he'll be okay again. And then I fully expect life to go back to boring once again (ya hear that,Murphy? LOL)! P.S. Isaac got weighed & measured today, too, and at 4.25 years old, he is 43.5 inches tall & 42.5 pounds.My little square! LOLSign My Guestbook Read TributesMonday, April 7, 2008 9:24 PM, PDTI'm almost afraid to blog about how calm things are these days because every time I do, I seem to jinx myself and then thesh*t hits the fan again. But the truth is that things are sailing along fairly smoothly nowadays. There are some hassles, ofcourse ~ with 7 kids, would you expect anything less? ~ but overall, life is calm right now and calm is good.Joshua is sleeping well at night, only nursing a few times during the day and has vomited just three times in the past week.His speech is increasing, though it's definitely at the point where most words are intelligible only to those who know him well.LOL He does say many things clearly, however, such as mama, Adam, daddy, MayMay (Megan), Emmy (Emily), Izit (Isaac),go, bye bye, hello & yeah. He tries to imitate a lot more words, but like I said, it's pretty much gibberish right now. Still, it'sa huge improvement and I'm really happy with his progress. It beats screaming in pain & throwing up all day long!Joshua is sleeping well at night, only nursing a few times during the day and has vomited just three times in the past week.His speech is increasing, though it's definitely at the point where most words are intelligible only to those who know him well.LOL He does say many things clearly, however, such as mama, Adam, daddy, MayMay (Megan), Emmy (Emily), Izit (Isaac),go, bye bye, hello & yeah. He tries to imitate a lot more words, but like I said, it's pretty much gibberish right now. Still, it'sa huge improvement and I'm really happy with his progress. It beats screaming in pain & throwing up all day long!Isaac has turned into one of the sweetest little boys ever! He's cuddly & predominantly happy and he says the funniestthings on a daily basis (I think it's the age). Either his articulation is s~l~o~w~l~y improving or the family's comprehensionis getting better because we all are finding it easier to understand what he's saying. I'm using a speech therapy programwith Isaac called Straight Talk. I got it through NATHHAN, a site dedicated to parents homeschooling their special needs kids.The program is written by a speech-language pathologist who believes parents have the ability to provide speech therapy totheir children at home in short increments throughout the day. It's a godsend to someone like me who is unable to get morethan 30 minutes of speech therapy per month for their child.David is, once again, not responding to the ADHD medication well anymore. Just like with Ritalin, the Concerta was effectivefor a couple of weeks and then bam! Suddenly it's as though he hasn't taken his morning pill at all. I know that medicatingautistic kids can be difficult because they often have odd reactions to things, so I'm not surprised by what's happening withDavid. I will be taking him back to the doctor to see what we try next.Please know that I don't intend to sound blase about this process; I know that some people view medicating children forADHD as the ultimate "wrong" and I admit that for a time, I thought ADHD was overdiagnosed and that Ritalin was overprescribed.Perhaps they are, but that doesn't negate the fact that some children actually need the help of stimulants tofocus and come down from the rafters in order to function in this world and David has shown himself to be one of thosechildren. So I have no compunction about 'drugging him up' in order to keep him from climbing the walls every day. Thatvideo I showed of David stimming a few days ago? That was him ON the Concerta. Try to envision that David moving about10 times faster and talking crazy gibberish and laughing maniacally because his brain is revving at 200 rpm. The medicationbrings his brain down to 100 rpm, which makes him better able to focus & concentrate on learning new things, lessinterested in stimming, less "crazy/spastic" acting and more like a typical little boy. And truthfully, having seen how muchcalmer David is on stimulant medication, I am totally unwilling to take him off the stuff. So now it's a matter of finding whatis going to work for him, in the right dose. The whole process is definitely an adventure, albeit not a horrible one.Ooh! Something awesome to share ~ David wrote the alphabet today for the first time! He needed a little help with a fewletters, but he got most of it all by himself. And he spelled out "sat" and "mom" and wrote his name. That was such a bigachievement for him and I'm so proud of him... I dated his paper and put it in his baby book so he can look back on itsomeday and know what a fantastic milestone today was.Emily & Sarah are sick, but not with anything serious (that I know of, lol). They're both coughing and both threw up oncetoday. Turns out Emily's friend's toddler brother (he's a week older than Joshua) has been sick and Emily has been hangingout with her friend because the friend isn't sick, so she didn't think it was a problem. The thought that the sick toddler walksaround coughing/sneezing/snotting/touching everything and then she touches the same things and thereby contaminatesherself never occurred to her (which is wouldn't; after all, she's not even 9 years old yet). And THEN I learned tonight thatEmily lost her toothbrush when we were in Portland and instead of telling me so I could buy her a new one, she's been usingSarah's. So yeah, I think I know why Sarah is sick, too. This experience provided the opportunity for me to educate Emily ongerm transmission and the importance of mentioning to Mom when things like her toothbrush go missing.Megan & Adam are doing just fine, too. Both of 'em are happy & healthy & fun conversationalists & all that good stuff. Yes,Adam still tries to micromanage his siblings, but that is not going to go away any time soon and I'm trying to not get workedup about it anymore. Megan has a friend who has claimed to have the same phone aversion that Megan has always had(seriously, the girl was freaked out by talking on the phone so she avoided it at all costs), yet both girls have seemed toovercome their phone loathing in order to chat for hours at a time with each other. I think it's awesome, of course, becausethat's such a typical teenage girl thing to do and I LOVE to see my kids doing things that are typical! :-) Also, the youngwoman is a lovely person, a great role model for my daughter & someone I truly like, so I can wholeheartedly encouragetheir friendship and that makes me happy.Things are so boring around here that I was able to spend the day (after schooling the littles) cleaning and dusting andvacuuming and scrubbing/rearranging cupboards and getting rid of the small amount of clutter/junk that has accumulated.All of the laundry got done. I made sweet & sour meatballs with rice for dinner and a chocolate ribbon pie for dessert. I evenbegan building the raised flower beds we're constructing in the backyard. I had time to play online, too, without having tofeel like I was avoiding some other necessary task. In other words, though it was a productive day, it was also really dull!But.... ya know.... I think I could *totally* get used to a "dull" life!Sign My Guestbook Read TributesFriday, March 28, 2008 9:23 PM, PDTWe woke up to snow this morning in Portland and it snowed all the way home. Not the blizzard, sticks-to-the-road stuff, butmore of the rain-mixed-with-snow slushy stuff. As I type this, it's snowing here at home, too. It's completely bizarre to havesnow at the end of March around here!Our trip north went well. Adam's heart is okay. The cardiologist thinks the chest pain Adam is having is musculoskeletal innature and probably related to growth. He did another echocardiogram and said there's been no additional dilation of Adam'saortic root, which was a relief to hear.Emily's visit to Dr. W also yielded positive news. While she does display symptoms for tethered cord, Dr. W believes that thepain Emily is having is related to her femoral anteversion and she wants us to pursue getting Em's legs straightened beforeshe gets her cord detethered. I need to schedule an appointment with the orthopedic surgeon instead of booking time withthe neurosurgeon. Dr. W said that yes, eventually Em will need to be detethered, but she feels comfortable waiting until afterthe orthopod does his procedures. The good news in all of this is that we walked out of Dr. W's office without a surgery date.That so rarely happens that when it does, it's cause for celebration.Joshua's appointment went exactly as I expected. His tethered cord is symptomatic and it does need to be released again,but Dr. W wants to give him a bit more time to recover from his last surgery before taking him back in for another majorprocedure. We've got some things to watch for with the understanding that if he starts having those symptoms, our waiting"for awhile" is over and he has to get in right away, but otherwise, Joshua gets a little reprieve from the hospital. Yippee!!!One sort of sad thing that happened was that Joshua absolutely recognized where we were when we approached the hospitaland he started crying. Then, this morning, when he woke up, instead of nursing or wanting a tubefeed, he wanted to be heldand just kept his head down on Adam's shoulder (I was busy packing stuff up to come back home). When we got into thecar, Joshua seemed really depressed and wouldn't smile or hold a toy or anything. I told him we weren't going to thehospital, but it wasn't until we were about 30 miles away that he looked around and realized, "Hey, we AREN'T going to thehospital! Cool!" and perked up. I think he wasn't interested in eating this morning since the typical routine has been that wearrive at the Ronald McDonald House, spend the night, get up in the morning & I refuse to nurse him or tubefeed himbecause we then head to the hospital for him to have surgery.... so I think Joshua thought, "Why bother wanting to eat? Youaren't going to give me anything." It was heartbreaking! Once he realized that we really were on our way home, though, hewas happy happy happy and he was a great traveler.On the way home, we stopped at the NIKE outlet store & were able to find 2 pair of shoes for Adam (size 18 isn't that easyto come by, so we were totally jazzed), a pair for Emily, and hightops for Joshua that will work with his braces and are cute(versus the ugly white orthopedic-type that I've had to put him in thus far).All in all, it was definitely a good trip ~ much better than our last foray north!Sign My Guestbook Read TributesWednesday, March 26, 2008 9:22 PM, PDTWe're off to see the wizard! Well, not the wizard, per se. More like the neurosurgeon. And the cardiologist. But whatevertheir titles, the end result is the same ~ I'm off to Portland again. This will be just an overnight trip with Adam, Emily &Joshua all seeing doctors (cardio for A and nsg for E & J), so at least it'll be quick.Joshua saw the ped today. He's gained 2/3 of an ounce (20 grams) in the past 9 days, which isn't great, but at least he'sgaining something versus losing weight. And he's not throwing up as much now that we've upped his meds to higher doses &increased frequency throughout the day, so that's another small improvement. The next hurdle to tackle will be endingbreastfeeding at night, which I'll start this weekend.Everyone else is chugging along like always.I'm hoping for good news tomorrow for all 3 kids. Good news, in my opinion, translates into no one needing surgery or anymajor testing. My hunch is that Adam's chest pain is due to anxiety & nothing serious. I know Emily is more-symptomatic fortethered cord than she used to be, but I am uncertain if it's progressed to the point of needing to have her cord released, soI can't guess how things will go with her. And even though Joshua's foot turns inward more than it used to and he doesn'tlike to have his legs lifted or bent during diaper changes, I don't think Dr. W will want to detether him any time soon. I'll besurprised if she says it needs to be done in the foreseeable future. So there... those are my guesses.... we'll see how close Iget tomorrow. :-)Sign My Guestbook Read TributesMonday, March 3, 2008 9:20 PM, PSTAs of 5:45pm, Joshua was officially discharged from the hospital! We are staying at the Ronald McDonald House tonight(Charley is on his way up as I type this) and we'll head for home tomorrow morning. He's got some new meds & he'll have tosee the ped fairly often for the next 6 weeks or so, but so what? We get to go HOME!!!!!WOOOO HOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!Oh, and Joshua is pretty happy, too. :-)Sign My Guestbook Read TributesMonday, March 3, 2008 9:19 PM, PST"We're getting closer." Those were the words out of the director of medicine's mouth this morning when he came to check onhow Joshua is doing. No word yet on when he'll get out, but a couple nurses think it could be as early as tomorrow!Joshua kept down 50 ml/hr continuous feeds last night, though he had some "urpy" moments where I thought he mightvomit. He had a bolus feed this morning and did fine with it, as well. He threw up only once in the past 24 hours. He took 2tiny bites of birthday cake (yea!) and seemed to enjoy it. Things are definitely looking up!!!!!Sign My Guestbook Read TributesSunday, March 2, 2008 9:18 PM, PSTBeing in the hospital isn't exactly how I pictured celebrating your 2nd birthday, but I will choose to focus on the positive thisvery special day. You kept down your continuous feed of 40 ml/hr last night. You are having more periods of being happy(and for longer stretches of time) each day. Your smile lights up the room and your laugh makes everyone who hears it grinand chuckle with you. The nurses are doing their best to make today a good day ~ they decorated your half of the room andhave a fabric cake that everyone who has taken care of you is signing so we can remember them all. There will be a cake foryou this afternoon and maybe you'll want to take a bite of it. Some sweet friends have sent you birthday presents tobrighten the day. And when we get home, we'll have a party with the family celebrating both your birthday and mine (whichis on Wednesday).I remember your birth so vividly, Joshua. Learning you had spina bifida was one of the most-difficult moments of my lifebecause it was so completely unexpected. We knew you had a blood incompatibility and would be jaundiced and need bloodtransfusions, but there was never any suspicion that you'd be flown 300 miles away to have neurosurgery and that we'd beseparated for the first 2 weeks of your life. I think that the many challenges you've faced in your short life have given you astubborn determination to overcome all adversity and I believe God will use you in some very special ways because of thegifts He has given you.I love you, my sweetest little man. You bring so much to my life and I look forward with eager anticipation to the happinessand fun times we are going to have this next year!Happy Birthday!!!Sign My Guestbook Read TributesSaturday, March 1, 2008 9:13 PM, PSTJoshua spiked a fever and was showing signs of altered consciousness (slept for 4.5 hours mid-day, hard to rouse, shiedaway from lights), so his central line was removed & he's on antibiotics. Now everyone is nervous that he's brewing a CNSinfection and that would be "very bad", to quote 3 doctors & 2 nurses who all said the same thing to me throughout the day.However, he's calm and mostly-happy tonight, so I'm not too worried. Even if he's got an infection, it was caught quickly andshould be taken care of by the antibiotics, so it'll be okay.Another concern is that if he can't get in enough fluids, he'll still need IV access and now he doesn't have one, so if that is aproblem, he'll get a PICC line on Monday.One other concern is that his balance is still off. He can walk, but he wobbles & weaves & his gait is different, especially in hisleft leg, as compared to pre-surgery. We knew that his balance could be affected by the surgery and it appears that did takea hit, but everyone is hopeful that with some physical therapy and possibly some higher bracing (how I wish our PT werearound to tell me if she thinks that's necessary ~ should I fly to Australia to get her opinion? LOL), Joshua will be just fine.His sitting is also not as good and he prefers to stay in a "W" sitting position since it's easier to balance that way, but again,he'll probably get better with time and extra therapy.He isn't tolerating 6 ounce feeds today as the GI had hoped, so we backed down to 5 ounces and tomorrow will try to gethim to keep down 5.5 ounces. With the addition of Erythromycin, he was able to keep down 1 ounce/hour continuous feedlast night for 8.5 hours, which was great. Tonight we'll be trying 40 ml/hr (1.33 ounces) and seeing how he does. The goal isto get him to tolerate 50-60 ml/hr. It's a slow progression, but at least he is continuing to make mostly-forward progress.Sign My Guestbook Read TributesFriday, February 29, 2008 9:13 PM, PSTJoshua kept two 4-ounce feeds down yesterday and has kept two 5-ounce feeds down thus far today (he's getting his 3rdfeed as I type this). He didn't do as well overnight with a continuous feed of 1 ounce per hour; he threw up after 7 hours andlost most of the 7 ounces he'd gotten.His pain is being controlled by tylenol with codeine alone ~ he hasn't needed any morphine today, even after having thedressing for his central line changed, which is a great milestone to have (finally) hit.His central line was scheduled to be replaced yesterday because they are not supposed to be kept in place for more than 10days (his is on day 12), but the GI doc decided to override the neurosurgeon's orders and canceled the procedure (highlyfrustrating), which has led to some intense "discussion" around here with the various specialists as things get coordinated forthe weekend. With the PICC team not being readily available to replace the line today, it's been decided to limp along withthe current central line and to flush the dual ports with vancomycin every 4 hours in the hopes of staving off an infection.Joshua has been very fussy and lethargic today, which is a little concerning to me. He's wanted to be held constantly and hasbeen content to keep his head resting on either Adam or my shoulder. He's slept for most of the day, too. This behavior isdifferent from the past few days, when he was playing a bit and showing much more animation and "life". I am hoping heisn't brewing an infection in his central line, as he would become septic if that happened and that, obviously, could be verydangerous and would prolong our hospitalization time. He's had some low-grade temperatures, but nothing concerning thusfar.An interesting/weird tidbit: his IV fluids were decreased from 45 ml/hr to 15 ml/hr and this resulted in the bulge at the backof his neck, which is from a CSF leak, to almost completely disappear. I thought it was a great thing, but the doctors werepuzzled because it's such a weird thing to have happen. Reduction of IV fluids shouldn't affect a CSF leak. But again, Joshuaseems to have not gotten the memo about "routine" things. I don't think it's any big deal and no one has said anythingdifferently, so it's not something I'm worried about.Joshua's been inpatient for 12 days and I still don't know when he'll get discharged. This hospitalization will be his longestthus far after tomorrow. It kind of blows my mind to realize that out of the past 10 months, we've spent almost 1month inthe hospital. I hope that as he gets older, his surgeries become less-frequent and we have to come up here only infrequentlybecause this kind of schedule we've been on is getting old.Sign My Guestbook Read TributesTuesday, February 26, 2008 9:12 PM, PSTWe're still in the hospital. They're saying we'll be here another week at least. Charley is coming up either today or tomorrowto bring supplies (catheters, Joshua's formula, groceries) and the little boys so that David, who is not doing well in myabsence, can hopefully hang in for another week.When Charley is here, I'll be able to leave Joshua with him for an hour or so and will thus be able to come here and updateon all that has been going on and what the future plan is.Check back later for a more-comprehensive update. And a quick shout-out of THANKS to everyone who has called and/orsent flowers, balloons & other gifts for Joshua (and Adam & me). You all are such awesome friends!!!!Sign My Guestbook Read TributesMonday, February 18, 2008 9:11 PM, PSTI am feeling much better this morning. I spent time holding Joshua (he nursed to sleep and stayed that way through most ofExtreme Makeover: Home Edition, so I got 2 hours of cuddling in) and then, when we went to our room, I spent some timepraying over him. I am feeling calm and relaxed as we prepare to go to the hospital in a few hours. Joshua is sitting besideme, drinking some Sprite & apple juice and not demanding to nurse (a major miracle right there) and playing on thecomputer. He's calm & peaceful, as well, and I feel God's presence all around us.I don't know how soon I'll be able to get back here to update. Probably tomorrow morning when I run down here to get ashower and breakfast.Thanks in advance for those who pray for Joshua today. I have an image of a blanket of prayers wrapping around Joshua,lifting him to God and that comforts me. Here's hoping & praying that today goes well. I'll let you know.Sign My Guestbook Read TributesSunday, February 17, 2008 9:11 PM, PSTWe're here at the Ronald McDonald House across from the hospital again and now I'm nervous.Charley's on his way home, so I'm praying he has a safe drive. Megan says she & the kids are doing just fine, which is adirect answer to prayer. But I keep looking at Joshua and feeling a knot in my stomach as I contemplate tomorrow's surgery.I'm scared.I'm apprehensive.I'm looking forward to this being over and knowing what the outcome is. But a part of me, the worried/cynical/lacking-infaithpart, whispers that I should enjoy Joshua as much as possible today because WHAT IF...... what if something goeswrong? And it's that stupid little voice in my head that is creating this feeling of sick fear and I hate it. I want to have faiththat everything will be fine. I want to absolutely trust that God is in control and therefore no matter what happens, it's God'splan. I don't know why this time is different. I have been calm and just fine through all of Joshua's otherssurgeries/hospitalizations, as well as David & Sarah's, so why is this one freaking me out? Maybe because it's going to be amore-difficult & invasive procedure? Maybe because no one is overly confident that it's going to be the "fix" that lasts? Maybeit's just because I'm burned-out from his and the other kids' multiple medical "stuff" and I'm finally "hitting a wall"? All Iknow is that I need to burn off this nervous energy & get back into my groove of FROG-ING (Fully Relying On God) beforetomorrow morning. I refuse to walk into the hospital feeling the way I do right now.Sign My Guestbook Read TributesThursday, February 14, 2008 9:10 PM, PSTDr. W's P.A. (Physician's Assistant) called tonight to chat a bit more about Monday's surgery. She wanted to answer anyquestions I had and ensure I understand what the plan is. I figured I'd share what I know.First, Joshua will continue taking steroids until the surgery. On Monday, Dr. W will open the back of his neck, remove thebone that regrew, place a large dural graft to enlarge the surface area in the hopes that even when Joshua forms excess scartissue in response to the surgery, he'll still have room for CSF to flow freely, and she'll remove the lower portion of hiscerebellum; specifically, the portion that keeps getting wedged into his spinal canal (called the cerebellar tonsils). Oh, andshe'll remove all of the scar tissue that has formed, as well as other cellular "debris" that has accumulated. The surgery isexpected to take about 4 hours, but could go longer if there's more scar tissue than expected or if they run into anyunforeseen obstacles.The recovery for this surgery will be harder and longer than the previous two chiari decompressions. The P.A. told me thatwith a surgery as aggressive and invasive as Dr. W is planning to do, Joshua will probably feel pretty lousy for several daysafter surgery and then begin to show signs of improvement. The loss of CSF during the surgery will most likely result in apretty bad headache and excessive nausea/vomiting. Of course, that's been the norm for Joshua for awhile, so she admittedhe may not notice much of a difference in the first few days post-surgery. Instead of planning to get discharged 2-3 daysafter surgery like we normally do, she said it will probably be longer, but she couldn't predict how long Joshua will remainhospitalized. She said it will depend entirely on how he's doing and if he's having any complications. I asked what she andDr. W felt were the chances of a complication occurring and her answer was that Joshua is very unusual and unique, and he'salready very ill, so there was no way of knowing whether he'd bounce back after surgery or if he'd continue to struggle. Assuch, they want to go into the surgery being prepared for a potentially unusual post-surgical recovery. I am not really surewhat I think of that. I mean, I'm glad they're prepared for things to not go according to protocol, but it highlights even morethat Joshua blazes his own path with things.Lessee.... what else? I asked if the removal of the cerebellar tonsils was going to be a problem. You know, doesn't Joshuaneed that part of his brain? She told me that it'll be okay, and that Joshua is young enough that IF (and she emphasized thiswas an "IF" situation) he had any loss of function, the rest of his cerebellum would compensate. She said Dr. W loves thecerebellum the most (of all parts of the brain) because it is so resilient. It can take a licking & keep on ticking. So eventhough Joshua will lose a tiny part of his brain, it shouldn't affect him negatively. And having that brain tissue not pluggingup his spinal canal anymore could help eliminate most, if not all, of his symptoms.It's possible that the chiari could reform ~ if more of the cerebellum descends out of the skull into the spinal canal over time.It's also possible that the surgery itself will create so much scar tissue (especially since Joshua overproduces the stuff) thathe'll get reblocked once again. However, Dr. W is going to create as much space in the back of Joshua's head as she can, sohopefully this will be the last brain surgery he'll need.I asked the P.A. what she thought would happen if this surgery didn't stop Joshua from throwing up and/or enable him totolerate normal-sized tube feeds again. She said that she didn't know for sure, but she had chatted with Dr. W and they bothagreed they'd probably put in a port and do TPN (total parenteral nutrition) while they conferred with gastroenterology &neurology to determine what the next step would be. So while we are hoping that doesn't happen, at least there is a plan fordealing with the possibility of this decompression not fixing the vomiting/nausea problem and that is reassuring to me.I was feeling very sad and broken about this situation, but can honestly say I feel much better now. I have had some goodconversations with friends (thanks Karen, Anne, Jenni & Jennbug) and God has given some of them specific messages torelay to me (and the really cool thing is that two friends told me the same things, separately, which was such a greatconfirmation!), so I feel strengthened, comforted and much more able to trust that God has a plan that, while it doesn'tmake sense to me right now, has Joshua & me exactly where He wants us to be. Also, as strange as this may sound to someof you reading these words, I am comforted in knowing that Joshua isn't going to remember all of this. He's not yet 2 yearsold, so he's not going to have any recollection of having so many surgeries and the pain and misery he's endured. I thinkthat's a blessing of sorts. It'd be nice if I could get some Versed and not have to remember all of it, too, but I guess trialslike these are God's way of drawing me closer to Him, so I'll be okay, too. I can't imagine going through all of this withoutHim, though. I really feel sad for people who don't know God and have a personal relationship with Jesus because i wonderhow they cope when really tough situations occur in their lives. I'm not always a good example of a Christian ~ I haveimperfections that get in the way of my walk with God more often than I like ~ but I do know that when the going getstough, I'm not alone, and being able to turn to the Lord is a huge comfort to me.For anyone who wants to see what a Chiari decompression looks like, you can watch this youtube video: It shows an actual surgery and answers a lot of questions people haveabout this condition. Around minute 57, you can see the brainstem & cerebellar tonsils, so you can get an idea of what partof Joshua's brain is going to be removed.Sign My Guestbook Read TributesTuesday, February 12, 2008 9:09 PM, PSTJoshua had his MRIs today and saw the neurosurgeon afterward. The results of the scans weren't great. The bone that wasremoved from his skull in October grew back (almost unheard of, but it does happen) and his chiari is completely occludingthe passage of cerebrospinal fluid from his spinal canal into his brain in one direction (the backside of his spine/brain). Thereis a large amount of scar tissue filling up the space behind his brain/going into his neck, as well. Also, his spinal cord isretethered and there's blockage of CSF in his lumbar & sacral spine region. The only good news we heard was that there isno syrinx formation yet. I have copies of the MRIs on CD and tomorrow I'll post a few pictures to show what is going on.The plan is for Joshua to have another brain surgery on Monday and then have his spinal cord detethered a month later afterhis head is sufficiently healed and we are able to ascertain what kind of improvement, if any, was obtained by doing the 3rddecompression. The neurosurgeon didn't want to do surgery tomorrow because she'll be out of town on Thursday & Fridayand she said she does not want to be gone in case Joshua has problems post-surgery.Dr. W was not at all certain that these surgeries are going to be the answer to all of Joshua's symptoms, but she said heabsolutely needed them done (and having seen the scans, I agree). She is concerned that he overproduces scar tissue inresponse to any trauma and she was frustrated at how quickly Joshua gets re-blocked. It's really unusual that Joshua ishaving so much trouble with his chiari ~ most people with chiari never need surgery at all, much less 3 surgeries in 10months' time. It's also worrisome that he overproduces scar tissue because, as the neurosurgeon told us, she can't keepgoing inside his head every 3 months without dire results eventually occurring.Joshua is scheduled for surgery at 12:30pm Pacific time. Dr. W put him as the last kiddo of her day (she has 2 others aheadof him who she is sure won't be complicated) so that no one else will get bumped if Joshua's surgery goes over the 4 hoursexpected (a decompression typically takes her 1.5-2 hours). She said she wouldn't do his back on the same day (she didboth his brain and back last April) because the decompression will be too extensive and because the last time she detetheredhis back, she expected it to take 1.5 hours and it took 6, so she doesn't want to tackle it again after doing his brain since shefully expects his back to be even more-involved this time around.Dr. W said this surgery will be "big", "extensive", "invasive" and "no guarantees given for measurable success"....she alsoadmitted that she doesn't know what we'll do next if these procedures don't work. I think it's reasonable to say Joshua andshe could use as much prayer coverage as possible on Monday.Sign My Guestbook Read TributesMonday, February 4, 2008 9:09 PM, PSTI may not have much time to blog until after Joshua goes to Portland. He is not doing well at all, and the steroids he's on tokeep the swelling in his brain under control make him absolutely crazy. He cycles between extreme mania (during which timehe's "so so" overall) & aggressive anger/whininess/crankiness (during which time it's tempting to want to put him in a room,close the door and walk away for about an hour because even though we know WHY he's acting like this, it doesn't make iteasier to listen to for hours every single day). In-between, he's throwing up but still wanting to eat (thanks to the steroids) ~and he's losing, on average, 1 ounce per day (he's now 26lb,6oz down from 27lb,12oz). He's miserable and he's not evenremotely "okay" unless I am holding him and even that isn't a guarantee of a content child. Right now, as I type this, he'shaving a screaming fit in Megan's arms directly behind me.... I'm not trying to appear cruel as I type a blog entry rather thantend to him (but seriously, I've had few breaks from him in the past 3 weeks), but I wanted to give a quick update so youdon't wonder where I disappeared to.We'll be in Portland at the beginning of next week. I was told today that if Dr. W weren't out-of-town, we'd be there already.There is a plan for MRIs and then surgery and rumor has it that there will be some interesting procedures performed thistime around (not just a straight chiari decompression). Definitely on his brain, but possibly also on his back. Depends on ifthe MRIs show a tethered cord or not. I don't even care anymore what Dr. W does. I just want Joshua to be "fixed" and to bebetter again. We cannot live like this for much longer and aside from being exhausted by Joshua's misery, I feel so incrediblysad that he's suffering. There's no melodrama in using that word to describe this, either ~ "suffering" is the most-aptdescription available for what my little guy is going through.Anyhow, those of you who know my cell number can reach me when I'm out-of-town. Those who don't know my cell numberbut know the hospital we always go to can reach me that way. Or you can just wait for us to get home and read whatever Iget around to blogging and find out what happened that way. It'd be nice to hear from friends, though... makes me feel a lotless lonely when I'm stuck in the hospital by myself with an unhappy toddler (hint, hint).Sign My Guestbook Read TributesMonday, January 21, 2008 9:08 PM, PSTThe phone lines have been buzzing today.Joshua woke up and promptly threw up. Then he threw up again during his morning tube feed. I decided to call Dr. W afterall and did, leaving a message on Jenny's voicemail detailing everything that was going on. Then I called Dr. S's office to lether know how the weekend went.Dr. S called back and after a lengthy conversation, we came up with what she termed a "stop gap" plan ~ get lab work doneto make sure there wasn't a liver, kidney or metabolic problem that we're missing and put Joshua on pedialyte (1 ounce perhour) and clear liquids by mouth to give his gut a rest & to get him rehydrated.I took Joshua to the lab and got the blood drawn, which was no fun. He's so difficult to get a needle into and even though Iwarned them and they got their best phlebotomist on the job, the tech still had trouble and was probing under Joshua's skin,rooting around and trying to find the vein (which I know hurts like heck). He had to poke him twice ~ once in each arm ~but they finally got it done. Poor baby was almost hysterical by the time it was over, though.And 2 hours later, we had the results that everything looked perfect. So that rules out a lot of other potential problems,which is good, but it points toward this being neurological, which is not good. As it was told to me today, if Joshua has someneurological 'glitch' that has his brain sending the message to his stomach to vomit every time his stomach is full, then we'vegot a big problem on our hands.The P.A. from Dr. W's office called and we talked for a long time, too. She said Dr. W wants Joshua up in Portland to haveMRIs and to see her. She said the concern they have is that there may be scar tissue adhered to brain/bone structures andthat could be causing Joshua's symptoms. Dr. W is also wondering if Joshua's cord is mired down in scar tissue and thuspulling the bottom portion of his brain out of his skull, which would also show up in the constellation of symptoms he'shaving. So we'll be heading north soon. I'm still waiting for Dr. W's assistant's call to tell me the date/times for the MRIs andoffice appointment once she gets it all coordinated.The bad news is that we have to go to Portland again.The good news is that no one messes around anymore when Joshua becomes seriously symptomatic and that's a relief tome.Jenny told me that Dr. W said if Joshua winds up having more surgery (and she told me to pack for an extended stay, "justin case"), we are going to have to do our best to have someone watching him at all times and trying to prevent any injury forat least 6 months post-surgery, but ideally for a year afterward, to hopefully keep him out of the OR for an extended time.She said Joshua is so completely atypical from other kids that the standard rules don't apply to him. I told her that I didn'tknow if that was such a glowing compliment, coming from a neurosurgeon! (rueful laugh)Sign My Guestbook Read TributesSunday, January 20, 2008 9:07 PM, PSTToday was a better day. Joshua threw up only 6 times, which is a huge improvement from yesterday's 20+ episodes. It's stillabout what he was throwing up last week, which is what led me to call the doctor and led to the CT scan & the course ofsteroids (in other words, that aspect of his symptoms doesn't seem to be getting better), but at least the vomiting was backto a "reasonable" frequency. How quickly I went from being frustrated by 4-8 daily episodes of vomiting to characterizingthat as "reasonable", eh? Having a day like yesterday really puts things in perspective fast.He was happier today, which was a nice change. Still had the emotional lability due to the steroids, but overall he was morecheerful and less aggressive. He said mama, Ada, go, byebye and hi today. It was nice to hear him calling for me again. :-)He tolerated 1.5 tube feeds without a fight and he didn't throw up after the first one. When I cathed him, he didn't have theusual amount of urine come out, but at least it wasn't *none* like yesterday (I'm assuming he got dehydrated from so muchthrowing up). The pressure sore on his foot (that I found yesterday but forgot to mention in my post ~ the result of his newbraces & my being negligent and not inspecting his feet carefully every day) is not oozing or infected and he's not botheredby it (lack of sensation in that area, obviously). He did reach around to his lower back and scratch/rub it at least half a dozentimes during the day, but I don't know if it was bothering him or if he was just messing around. He's still falling a lot, butnow that he can't wear his braces, I can't be sure whether he's falling more due to lack of support or something else.Since he had a better day, I'm not feeling the same sense of needing to call Dr. W first thing in the morning tomorrow. I amgoing to call Dr. S (ped), instead, and let her know how the weekend went. If she thinks Dr. W needs an update, I'll let hermake the call. She may want to wait until the course of steroids is over with (Wednesday) and go from there. As long asJoshua doesn't have a repeat of yesterday, I am okay with waiting a bit to take the next step. When he's being happy andplaying, it's hard to be convinced that there's anything seriously wrong with him. 'Course, Charley (the eternal pessimist)reminded me that Joshua was playing happily in Dr. W's office last April when she said he was too unstable to let us go homeand admitted him to the hospital for his 1st chiari decompression & cord detether. So... he's got a point. I guess we'll seewhether this rollercoaster continues to go up and then hang out at the top of the hill for awhile or if it's going to free-fallback down right away. I have to admit, I hate the suspense. I'd rather just know NOW what's up and what the gameplan is. Iloathe "wait & see"!!! And while I am thrilled that Joshua had a better day, I am wary of getting *too* excited because whoknows whether the good times will last?Sign My Guestbook Read TributesSaturday, January 19, 2008 9:07 PM, PSTJoshua is throwing up within 30 minutes of eating. Every. Single. Time. It doesn't matter what he eats or how much (which,btw, is not a lot at any given time ~ 1 saltine or a half a slice of turkey or a pudding cup).The steroids make him hungry and his mood cycles from happy to upset so fast that it's hard to keep up. He goes fromlaughing like a maniac to suddenly crying or screaming and having a fit. It's insane. And because he's hungry, as soon as hevomits, he wants to eat or nurse again. It's been a never-ending cycle all day long.He's falling just as much as he was before starting the medication. His sitting balance seems to be better overall, but he'sstill tripping and falling when he walks, which used to elicit an "Ohhhhh" and then he'd get right back up, but now it makeshim cry.He's still sleepy, but he's having trouble staying asleep, which is probably due to the steroids (the package insert said itcauses difficulty sleeping). He does better at night than when he tries to nap during the day.Megan and I haven't heard him say anything other than "hi" all day. Adam said that he heard "Ada" and Joshua's equivalentof "SpongeBob" and "puppy". Other than that, he's not talking much. I realize he doesn't have a lot of speech as it is, but wegenerally hear more words throughout the day (like mama, dada, go, goodbye, fishy & yeah ~ those are his "staple" wordsthat we generally hear every day).I don't know what is going on. I don't know if this is chiari or some other neurological glitch. There's nothing I can do untilMonday, and then I'll call Dr. W's office and talk to Jenny (the PA) and see if she has any idea what we should do next. Itseems apparent to me that the steroids are not working the way Dr. W and Dr. S had hoped they would.Please say a prayer for Joshua, that he'd be able to keep some food down. He's only gotten 2 ounces of formula todaybecause he just won't sit still for a feed AND when we tried giving him his first feed this morning, he threw up halfwaythrough, so I've been afraid to try to give him another.Sign My Guestbook Read TributesFriday, January 18, 2008 9:06 PM, PSTRiddle me this: If Dexamethasone is supposed to reduce vomiting and nausea (as well as act as a powerful antiinflammatoryagent), then why is Joshua still throwing up just as often? Five times between 5pm & 10pm, and that's just thetimeframe that we kept track. The child is taking Zofran 3 times a day to combat nausea, plus the Decadron, and he's *still*gagging & throwing up? This makes me feel very nervous.Charley is convinced we'll be heading back to Portland for a visit to the neurosurgeon and another hospitalization for Joshua.I have no idea what Dr. W could do. I don't know if a 3rd decompression is possible. There's no bone at the back of his skullfor her to remove. She's already taken out the top 2 cervical vertebra. There should be plenty of space for CSF to flowaround the brain.... so what is going on? Is there scar tissue blocking things again? Is the chiari pressing up against thebrainstem again? Those are things she could remove/fix. Or is it some funky neurological "thing" that is triggering thecopious vomiting and, if so, what can possibly be done to remedy that? I can't imagine my child having to live with constantnausea & random throwing up for the rest of his life, plus headaches & periods of unsteadiness that leave him staggering likea drunk.Everything rests on the outcome of 5 more days of dexamethasone. 10 more doses. Then the swelling in his little brainshould be gone and with it, all of his accompanying symptoms. But after the initial quadruple dose (4mg) & 3 more regulardoses (1mg each), we should be seeing a big improvement already (per the docs). We're not. So riddle me an explanationfor what this all means, someone. Please.Sign My Guestbook Read TributesThursday, January 3, 2008 9:06 PM, PSTJoshua is now 27lb,8oz, which puts him at the 50th percentile! Woo hoo! He was just below the 5th percentile when he gotthe gtube in the middle of August (2007), so he's doing great. But even better than his weight gain is the fact that he's nowonly getting half his calories through the tube.... he's taking in 50% of his calories by mouth!!!! I wish I had a "happy dance"icon to express how thrilled I am. Joshua doesn't eat many different types of food, but he's eating a lot more of the foods helikes and it shows! He is such an amazing little boy. Truly. He is so resilient & I'm so proud of what a little fighter he is.Oh, and since I'm bragging on my Joshie-bear, I have to mention that he is getting his speech back! For those who don'tknow, Joshua lost his speech completely during a horrible 11-day hospitalization at the end of September (2007) ~ he had acomplication during the placement of his mickey button that necessitated emergency abdominal surgery (donelaparascopically) and somehow, that led to a complete neurological decline that ultimately resulted in the 2nd chiaridecompression. Anyhoodle, he'd gotten a few words back, but in the past few days, he's suddenly gotten several more, soeven though he isn't actually talking much overall, it *seems* like he is since he's been only babbling for so long (if thatmakes sense). He can say "mama", "dada", "Ada" (Adam), "Naynay" (Megan ~ all of the little kids go through a time ofcalling her Maymay), "Emmy" (Emily), "bye bye", "hi", "more", "oh", "yeah", "deet deet" (beep beep ~ he loves to push the'panic' button on Charley's keys), and he makes an approximation of "ice cream". So.... not a huge vocabulary, especially foran almost-2 year old, but ya know what? It's AWESOME for Joshua and I am incredibly excited by his progress. No one knewif he'd regain the language he'd lost, so to hear him talking again, even just a tiny bit, thrills me more than I can express.Sign My Guestbook Read TributesSaturday, December 8, 2007 9:05 PM, PSTHere I am, writing my very first EVER blog post. I can't believe I'm doing this, but heck, everyone and their dog has a blognowadays and I don't want to be behind the times, so I figured it was time to bite the bullet and just do it. lolI suppose Ishould write a little "Introduction to My Kids" post for anyone who might come across this blog and decide to take the time toread it.Megan is my oldest. She's 16 and NT (neurotypical). Okay, if you want to get technical, she does have Tourette's, but aroundour house, having *just* minor tics means you're fine. Really. I know that some people view Tourette's as a disability, butMegan and her father and I see the condition as a nuisance and nothing more. Megs is beautiful, intelligent, mature waybeyond her years and a huge help around the house. She is a lovely young woman with a spiritually-sensitive heart and Isometimes step back and wonder, "HOW has she become this person? I wish I were more like her!" So many people gripeabout their teenagers and I, thankfully, can not relate to their angst. Megan isn't perfect (who is?), but she's a prettyawesome 16 year old. She enjoys reading, horses, reading, dogs, reading, dragons, reading, reading and reading.Adam is 15. He has multiple diagnoses, but the most-challenging ones are Asperger's & Auditory Processing Disorder. Adamis very smart, VERY mechanically-savvy and he has a knack for making me laugh uproariously with his preference forphysical comedy. He has a special bond with his baby brother, Joshua, and goes out of his way to help me with Joshua's careevery day. We recently had a doctor inquire whether Adam might have Marfan's Syndrome, so Adam is getting evaluated forit, but I don't think he actually has it. I think Adam is just a super-tall 15 year old (he's a bit over 6'6") with really big feet(size 18). Considering that my brothers are both over 6'7", it isn't a surprise that Adam is taller than average, too. Adam'sinterests revolve around medieval things, computers and Legos.Emily is 8. She has Asperger's, Arnold Chiari Malformation type 1 (ACM) and Tethered Cord Syndrome (TCS). Chiari is acondition where the lower portion of the brain (the cerebellar tonsils, which is the bottom part of the cerebellum) doesn'thave enough room and gets pushed out of the skull into the spinal canal, thus compressing the brainstem and blocking theflow of cerebrospinal fluid (CSF). This causes multiple neurological symptoms and can lead to such complications assyringomyelia (CSF being forced into the spinal cord), hydrocephalus, brain damage and unrelenting pain. Tethered Cord is acondition where the spinal cord is either adhered to bone/muscle/scar tissue OR where the lowest part of the spinal cord isstiff rather than being flexible like a rubber band, so it's unable to stretch and move freely as it should. When the cord istethered (stuck), then normal movement causes unnatural stretching of the spinal cord, which can lead to permanent nervedamage (as well as pain, mobility difficulties, numbness and other neurological symptoms). Both Chiari and Tethered Cordare treated with surgery. A Chiari decompression involves making an incision in the back of the head, along the base of theskull & neck, to allow a neurosurgeon to remove some occipital bone and the backsides of 1 or 2 cervical vertebra, then openthe dura (the casing that holds the spinal cord/brain/CSF) and add a patch to enlarge the area where the cerebellar tonsilsare at so that CSF can flow freely again and the pressure can be taken off the brainstem. A Tethered Cord release involvesmaking an incision on the lower back and releasing the cord from whatever it is stuck to. This procedure is prettystraightforward and easy for a simple tight filum (what Emily has), but it is much more difficult and involved for a personwith Spina Bifida since the amount of scar tissue that typically tethers the cord is enormous. Emily hasn't had any surgeryyet because her Chiari is asymptomatic and she isn't having enough Tethered Cord symptoms to make surgery worth therisk. However, we know that a TC release is in her future at some point because eventually she will grow enough to stretchher cord to the point where her symptoms require treatment. Emily is blonde, with big green eyes and a beautiful smile. Sheloves to read and do math, but her very favorite activity is anything involving crafts. I am so NOT a crafty person, but myEmmy is. She loves to create masterpieces from any material she can find and her room always has broken crayons anduncapped pens lying around (sigh).David is 6. He was my first diagnosed special-needs child. October 25, 2002 introduced me to the world of autism and thephrase "special needs". In addition to Autism, David also has Chiari and Tethered Cord. He had his Chiari decompressed onFebruary 21, 2005 and his cord was surgically released on August 12, 2005. As long as he remains asymptomatic, he won'trequire any more surgeries. David loves to play Gameboy games and watch movies. He likes "mutated lizards" (ie: Godzilla),Spiderman and SpongeBob.Sarah is also 6. She has Chiari and Tethered Cord. She had her Chiari decompressed twice, on July 7, 2004 and again onFebruary 21, 2005. Her cord was surgically released on February 21, 2005. Explaining Sarah's experiences with Chiari wouldtake a separate post, which I probably will write in the near future. Suffice to say that she's currently asymptomatic but hassome permanent side-effects from her condition that affect her learning abilities, but not her overall intelligence. Sarah is atalented artist, a mathematical whiz and one of the most-loving children I have ever known. She's the kiddo who is alwaysrunning over to give me hugs and kisses throughout the day.Isaac is 4. He received a PDD-NOS diagnosis at 15.5 months of age, but I vacillate back and forth whether I think he'sactually on the spectrum or not. It can go either way. He *is* very rigid and he still has a severe articulation disorder, buthe's also very imaginative and social in ways that David and Emily and Adam just aren't. Isaac likes guns (no, we don't ownany, but that hasn't stopped him from being obsessed with 'em) and playing computer games and riding his scooter.Joshua is 21 months old. He has a form of Spina Bifida called Lipomyelomeningocele (LMC), which is basicallymyelomeningocele (the Spina Bifida that most people are familiar with ~ where the baby is born with the spinal cord outsideof the body) that is covered by skin and also has a benign tumor made of fat, muscle & nerves growing in and around thespinal cord. Joshua also has Chiari type 1 and is fed primarily through a gastrostomy tube (gtube). He has severe nauseathat causes multiple bouts of vomiting each day as a 'side effect' of his second Chiari surgery. We give him Zofran aroundthe clock to combat the nausea and he receives just 5 ounces of Nutren, Jr. formula per tube feed since larger amountstriggers more vomiting. Since he has to take in 30 ounces per day of formula, it can be a struggle to get him fed oftenenough to ensure good growth, especially on days when he is throwing up more than normal. He has a neurogenic bowel andbladder, which is a fancy way of saying that he needs help to pee and poop because there is nerve damage to those bodyparts ~ he gets cathed 4 times a day and takes Miralax to stay regular. Oh, and he's allergic to latex, too, so I have to stayalert to what he's around and/or touching when we're not at home (the house is pretty much latex-free). In his first year oflife, Joshua had just 1 surgery ~ his initial repair done at birth where the neurosurgeon removed as much of the tumor asshe could, put his spinal cord back into the spinal canal where it belonged, closed the dura (with an artificial graft) and theskin. However, this past year has been one hospitalization after another. Joshua had 2 Chiari decompressions (April 20th &October 1st), 1 tethered cord release (April 20th), a gtube placed (August 13th), an emergency laparoscopy to retrieve apiece of the gtube that got lost in his abdominal cavity during a "routine" procedure to change the PEG tube for a Mickeybutton (both on September 25th) and then another GI procedure to change over the button once more (it was done in theOR just in case the same complication occurred again ~ on December 4th). He's also had multiple MRIs, pH probes,endoscopies, CT scans, xrays, ultrasounds of various body parts, VCUG/urodynamics, and more doctor appointments than Ican keep count of (over 100, easily). Joshua did have good speech for his age until he was 10 months old, at which time hisChiari became symptomatic and he lost what words he had. Unfortunately, he hasn't regained much speech and relies mostlyon pointing, grunting/squealing and a few words or approximations of words to communicate. Joshua generally is a goodnaturedlittle boy (as long as the world is going his way) and despite his challenges, he brings our family a great deal ofhappiness and laughter.So... that's the rundown of my kids and their respective "disabilities". Truth be told, the only kids Ithink of as having true special needs are David and Joshua. Asperger's and PDD-NOS are definitely a challenge and life canbe really difficult with Adam, Emily & Isaac at times, but overall, they are all so high-functioning that anyone who casuallymeets them probably wouldn't notice anything odd at all. Or maybe it's more accurate to say that because they have siblingswith problems greater than their own, high-functioning autism spectrum disorders don't rank as high on the "disability" scalearound here. ................
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