Mid November recap

I am glad to report that for the moment, we have Tucker's blood sugar under control! I was so frustrated and upset for awhile, having no idea what's going on with your little guy's blood sugar and tummy/intestines is not a fun place to be! Tucker ended up having diarrhea for 11 days and it's still not really over....seriously....BUT it is only once a day instead of 4-5 times a day, so I'll take it! This diarrhea started right when we changed to Glucerna (diabetic formula), so I was pretty mad that we traded one problem for another, and that Tucker missed two days of school (including a fun field trip) for no illness. He is now at the point where he just goes once a day, and luckily he poops at home, so he attended school 4 days this week:) After one week, we finally got the paperwork sorted out with the insurance, dr, and DME, and we now have one week's worth of Diabetasource, which is another diabetic formula comparable to Glucerna, but with more calories (yay). The DME can't get Glucerna for some reason, but the dr and I read all of the nutrition info, and it seems exactly the same. Tucker certainly reacted to it the same...fantastic blood sugars, and more diarrhea. I also switched out a few of the fruits in Tucker's blended diet (I mix his food for 3 out of 5 of his daily feedings), and his blood sugars look great with that as well. The diabetes nurse and nutritionists were very impressed with the nutrition Tucker is getting, they asked me where I got his feeding plan. I told them I started with the USDA.gov food pyramid, made it gluten-free and lactose-free, and ta-daa! Tucker's blended diet. Assuming his gut actually absorbs all of the nutrition, Tucker is the best-fed 4 year old around...too bad I can't say the same for Chris and me! Having all of this figured out really took a weight off of my shoulders. I picked up the order from the dr saying that the school can feed Tucker Diabetasource, so I'll drop that off Monday with the new food. Tucker missed school on Wednesday for a trip to the Craniofacial Clinic. This was quite an experience for us last year, as this is the appointment where we learned that Tucker's skull was fused shut in 3 of 5 places, and that his brain likely wasn't really going to get too much bigger...ever.... We also learned that there was really nothing we could do about it, so I thought we wouldn't go back to the clinic. Since last year, Tucker got diagnosed with mito, and microcephaly (small head) is actually quite common for mito kids. I called the neurosurgeon's office a few months ago to schedule Tucker's annual visit, and they asked me to see him in the craniofacial clinic instead. So on Wednesday, Mrs. Mia, Mom, and I packed Tucker up and headed to New Orleans. Tucker was seen by the ENT (who switched him to Zyrtec for his allergies, and told us she would almost never consider retraching Tucker-yay!), plastic surgeon, pediatrician, speech therapist, social worker, geneticist (recommended some new supplements for Tucker), and neurosurgeon. Both the pediatric dentist and oral surgeon had seen Tucker last year and said his jaw looked great, so I guess they didn't need to see him this year. That made for a long morning! It was actually a good day because the neurosurgeon discharged us. Tucker has not lost a specialist since September 2008 when the cardiologist discharged him...and lately we have been adding specialists left and right, so saying "adios" to one of them was fine with me! Speaking of "adios," that is one of Tucker's favorite words, we should have gotten him to say it to the doctor! Tucker was extremely well-behaved for the whole day, except for one point when he found all the buttons that moved the patient chair up, down, and made the head rest move:) He just loves pressing buttons and watching what will happen. I found the whole process exhausting. The doctors all had to ask us the same questions; at one point, I asked "did you read his chart?" When a doctor walks in and asks, "So how has Tucker been since the last time we saw him?" I want to say, "Well, a lot has happened in a year, so get out your notebook." The pediatrician and speech therapist were very impressed by all of the services Tucker receives and the progress he is making. He receives everything he can at school (OT, speech, PT, and Adaptive PE), along with private OT and speech. I recapped the summer of therapies, which made me tired just talking about. After I summarized our entire year for the social worker, including 4 hopsital stays (though all minor, thank goodness!) and a ridiculous amount of doctor and therapy visits, I came to the conclusion that we all deserve a vacation! :) In case anyone forgot, we actually have a vacation coming up right after Christmas. Tucker was awarded a Dreams Come True trip to Disney World, Universal Studios, and Sea World. None of us has ever been to Orlando, and we really have no idea what to expect or any real checklist of what to see, other than Mickey Mouse and the Potato Head store (you can buy all kinds of Disney character parts for the Potato Head there) :) Tucker doesn't really like shows, but he LOVES rides and music. He also loves fireworks and parades, along with spending as much time as possible with Chris, so a trip to several theme parks will honestly be a Dream Come True for Tucker. I recently learned that the Playhouse Disney characters have a show at Hollywood Studios, it only lasts about 20 minutes, so Tucker should be able to sit through that. The Playhouse Disney characters are the ones that he loves (Mickey Mouse and all his friends, Handy Manny and the tools, Agent Oso, and the Imagination Movers); I doubt he would recognize Peter Pan, Aladdin, or any of those characters...but he generally loves anyone in a costume, so it should be a fun trip. We haven't really talked about Disney very much, I think we are waiting until it's closer to really believe that we will make it! It's really hard for anyone to believe it when their child is granted a trip like this; we always planned to take Tucker to Disney, and we are thankful that we will get to have this experience with him. Please keep us in your thoughts and prayers as Tucker sees the GI (motility specialist) next week, the dentist the next week (always fun, right?), then the pulmonologist the first week of December.

Nuts and Bolts Update

Lots of planning is going on for Tucker right now, and I want to get it all out and straight in my head and for everyone. When Tucker got diagnosed with Mito in July, we began questioning every symptom and illness Tucker has ever had, and trying to look at them from a Mito light or a Prematurity light, kind of looking at where it all came from. As we went to follow-up appointments for lungs, eyes, and pediatrics, doctors' reactions to the diagnosis made it look kind of like a lightbulb went off, like "ah, yes, that makes sense." As time went on, we have attributed many of the symptoms that were nothing like mito (being over excited and having lots of energy) to actually being exactly like mito....because that is Tucker's way of trying to compensate for his lack of energy. So it has taken me weeks, months really, to wrap my brain around every issue I wanted to discuss. When we left Dr K's office in July, we agreed we didn't need to come back until February. A few weeks ago, I sent Dr K's nurse a list of about 5 detailed questions, about his blood sugar, sleep, hyperactivity, breathing, eating, and his heart. I also want to discuss his autonomic function (whole new ball of wax, right?). Dr K's nurse always emails me back right away, pretty much instantly. I often wonder when this team sleeps, because when I read other blogs it seems like they are in hospital rooms, at conferences, in clinic, and answering emails simultaneously! Anyways, this time I got no response. I waited about a week, then I emailed her again; she apologized but said she never got it. I re-sent it, and for some reason, I re-sent it about 3 more times before she finally got it. I even sent it from Chris's email, and I check each time, it was in my "sent" folder. So anyways, I finally saved it as a Word Document and sent it as an attachment. I got a reply that they would like us to come for a visit in October to really address my questions. Tucker is set to get more bloodwork then anyways, and he needs an echo/EKG on his heart that must be performed there, so we are trying to get all this scheduled together. Dr K also wants Tucker on insulin....I was pretty sure she would, since Tucker's "normal" blood sugars are fairly high. Since there is no cure for mito (yet), the treatment is to treat the symptoms before they become a big problem if possible. So maybe a regular patient would get insulin at a certain point, but a kid with mito may need it sooner because any extra work the body has to do in order to regulate sugars is really too much stress. So I don't know anything about insulin; I have a suspicion that it involves daily shots....well at least it's not bad enough that she wanted him to start it right away. She also wants to discuss Tucker's sleep study. I am very interested in seeing her point-of-view on this, and to see what she recommends. I need to call Dr T's office to see what he wants to do, since we found out 5 weeks ago that Tucker gets horrible sleep and no real rest, and we have no plan to deal with that yet. I also feel that Tucker does not get enough sleep for a regular 4-year-old, let alone a kid with mito. He gets about 9 hours most nights, and I would much rather him get 12-13. Ideally, going to bed at 8, wake up at 7 (that's 11 hours) then take the one-hour nap at school. So far he has taken a nap at school about two times, and on those days his behavior and energy level were great when he got home. The solution is not for me to pick him up early from school, though, because I don't know that he would nap any better for me! His teachers are trying so many techniques at school to get him to sleep, we are just praying that one works out! I also had questions about Tucker's motility. Motility is the motion of the food in the digestive system. When you chew and swallow, your esophagus moves the food down into the tummy, then the tummy has acid to break it down and push it on through the intestines, where the nutrients are absorbed, and waste is pushed out. That is a super simple explanation, really it is way more than that. So Dr K added GI Dysmotility on Tucker's list of symptoms, and we were puzzled by that. Tucker has regular bowel movements, and when we vent his g-tube before feedings, no formula comes up (if it came up 4 hours after a feeding, that would mean that obviously it had not moved downward to the intestines). Two years ago Tucker had a test to see if his fundoapplication was still in place (the surgery he got at 3 months old to wrap his tummy around his esophagus to prevent life-threatening reflux). This test showed that his fundo was definitely in place, and that his tummy emptied at a perfect rate. So we were very happy, but that test was over 2 years ago, so who knows what it looks like now? Tucker has always had a big gut, and little everything else! When he was 1 and 2, he looked like a bowling ball with little stick legs, my grandma Mimi had to do major alterations to every pair of pants he wore those two winters because he had to have big sized pants to fit over his gut, but then the legs and everything else was WAY too big. Last year he wore size 3T shirts and 18month pants, and Maw Maw didn't have to alter them, this year he looks like he will fit 2T pants and 4T/5 shirts. We always just laughed about it and said it's just part of his anatomy, but now I realize it could be because of slow motility. So anyways, that's something that we are going to look into. Dr K recommended a GI doc at Children's Hospital in New Orleans who specializes in motility issues as well as feeding issues. If a child has motility issues, their food may not move, and therefore eating isn't very comfortable. Tucker had a scope in May that showed he had no reflux, so eating is not painful for him. That is very good, but his lack of progress with feeding lately has got us all so confused! So more testing is in the future for that. I need to call and make that appointment. So on top of all of that, we had the follow-up at the Pediatric Psychology office two weeks ago. Chris and I took Tucker in for his attention issues, and we got the "official" autism diagnosis finally. Sounds weird, I know, since we have been basically treating him like he has autism for 2 years now, but the diagnosis was not formally in his chart. The diagnosis code won't help him get services, though, because our insurance is actually one of the plans in LA that are not covered by the new law that mandates coverage of autism services. I left the office actually kind of happy; the 10 page report they typed up sounded exactly like Tucker, and even had recommendations. Most of the recommendations were already being implemented at school, and much of the literature they recommended for us to read....well, we already have it all, haha! It just once again reminds me what a weird crazy ride we have been on the last 4 years.....when you get told your 4-year-old son definitely has autism, it should devastate you....make you rethink everything.....but it honestly wasn't even the worst news I got this month. One thing that was very interesting, but that I already knew. Mitochondrial disorder is very closely linked to autism. The psychologist said that she couldn't say for certain in Tucker's case, but that the research shows that his mitochondrial problems caused his autism; if he didn't have the mito, he wouldn't have the autism basically. So that hit a nerve, adding to my new mantra "I hate mito!" Sounds like a good motto, right? Last week, in an attempt to get every test imaginable done in 2010 and therefore save money in 2011 (that's my great new plan!), I called Tucker's neurosurgeon to schedule his annual follow-up in November. I said if he needed any tests (CT scan or MRI) I would really like them scheduled in 2010. They called me back the next day and said that Tucker wouldn't need any tests, but the neurosurgeon doesn't want to see us in his clinic; he wants us to come back to the cranio-facial team. This is the 8-specialist team that Tucker saw last October. This is the appointment where we learned that 3 of Tucker's 5 skull sutures are closed, and that basically his head hasn't grown in years, and it isn't trying to. So there was no surgical fix, so we thought we were done with them. It makes for a long day! We wait in one room, while different specialists come in: neurologist, neurosurgeon, geneticist, pediatric dentist, pediatric oral surgeon, pediatrician, speech therapist, and ENT. After they each see all of the patients, they spend the whole afternoon discussing each patient and writing reports with recommendations. We will likely see them in November (they only meet together once a month, so I'm not sure of the date yet). I really don't know what to expect with them-just a repeat of last year where everyone said he looks great except for the neurosurgeon who found glaring problems....I really have no idea! Tucker also has a cold that he can't get rid of. We are giving him his usual Claritin, Nasonex, and Albuterol treatments, on top of which I have added Triaminic. He had a 100 degree fever Thursday night, his usual temperature is about 97 degrees, and he almost NEVER goes above that, even when he is sick. So I was worried about him, but the pediatrician said he is okay. She said it is a "bummer" (really, she said that!) that the meds aren't controlling the cold, but he has no infections, his ears and throat looked great. Also his lungs sound very clear (yay!). If this continues, I will put in a call to the ENT just to make sure she is okay with the situation. Ahhh, and to think....about a week ago I was complaining that I was bored!!!! What on earth was I thinking?? On another note, I am still in shock and so so sad about Samuel. His fight with mito had a direct and obvious impact on how we are now treating Tucker, and it just amazes me how many lives this little boy and his family have touched. Mom and I are leaving for the funeral tomorrow. We will stay in Lake Charles tomorrow night then head to Katy Texas for the funeral services and the celebration of Samuel's life on Wednesday afternoon. Chris has to stay home to work (he uses all of his vacation time for Tucker's appointments), and Mrs. Mia and Mr. Ricky have graciously offered to take care of Tucker in the mornings and get him on the bus, while Aunt Alexis and Aunt Sarah are getting him off the bus and keeping him until Chris gets home. I am extremely nervous to leave him! I know that sounds funny, but I really am. I just really need to be there with the Knight family....as selfish as that may sound....I really need to hug them and be there to celebrate Samuel.