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.

The Cutest Monkey in the Jungle

Today was Tucker's first day of preschool. The anticipation was much worse than the actual first day, thank goodness! Chris went into work late so that he could watch Tucker get on the bus. Altogether there were 7 people waiting with him: me, Chris, Mom, Sarah, Mrs. Mia, Mr. Ricky, and Maw Maw Mimi! A neighbor passed by while walking his dog, and he asked us if we were all going to ride the bus to school:) Tucker climbed on the bus and didn't even look back! All the women had tears in their eyes, but not Tucker. The bus driver later told me that he whimpered when the bus pulled into the school...well of course he did, he probably wanted a longer ride. Mrs. Amy (his teacher) said that he walked into the lobby, which was swarming with kids and parents, and he cried a little then as well. Once he got into this classroom he was fine, though. There are 4 kids in the class right now, these are the kids with special needs. After a few weeks about 6 typical kids will join the class, which makes this an integrated classroom. I had to go to school at 10am and I will go back at 2pm to feed Tucker. The nurses and teachers can't feed him until Dr B's nurse faxes over orders for it, so I am going to feed him today. At 10am he was sitting at snacktime, he ran over and hugged me, but then went back for his snack. Mrs. Amy said he is listening to what they say, but he is having a hard time staying away from their purses and Mrs. Amy's desk! I told them yesterday on our visit that Tucker will just have to learn that classroom rules are different from the rules at his grandparents' houses! Mr. Tucker is used to everything going his way, so school will teach him otherwise. Mrs. Amy told me yesterday that it's hard for every mom to bring their kid to school and leave them with the teacher. She said someone told her when her son was born: "every mommy monkey in the jungle thinks her baby monkey is the cutest one in the jungle. It's very hard when you send them to school or daycare and realize that every other mommy feels that way, too, and they are in the hands of other people." I thought to myself, "well that makes sense, but MY baby really IS the cutest monkey in the jungle!" :) I just like them all to know that Tucker has a lot of love at home, and we will be there to support the school as well as hold them accountable for meeting his needs. God bless his teacher, and all of the teachers who have to deal with parents like me! Most of my friends are teachers, and I have heard some real horror stories of parents who would NOT let go, so I am definitely not the worst that's out there! ------------------------------------------------------------------------------ On another note, Dr B (Tucker's pediatrician) called me today, they finally received his lab results. His blood glucose was 95, which is normal. The problem is that glucose was present in his urine, which is not good. Also, his A1C level was elevated, at 49.4 (normal ranges from 1-31). The A1C checks his level of insulin over time, meaning that even though his current blood sugar is good, it doesn't mean that he doesn't have insulin problems. His body seems to be putting out too much insulin, and is not able to absorb it back. So the Endo said that we need to test it 3 times a day for 4 weeks, then we will take in all of those results to our appointment with him. I am going to see the nurse and get a meter along with education about all this. My mom took care of a little boy with diabetes (don't you all remember Zane? :) ), so she knows all about this stuff, but the dr said she would still like me to come by for education on it. We will hopefully get a free meter out of the deal, so that's fine. So the suspicion is that he may have Type 2 diabetes, but hopefully that is not the case....just add the Endo to the list of specialists and checking blood sugar to the super long To-Do list, I guess! We are hoping to monitor this and not let it turn into a big problem. We are also on the list for an Echo/EEG in Houston to check out Tucker's heart. If it comes back abnormal, we will be followed by a cardiologist here at home. If it is normal, then Tucker will wait 2-3 years to have another one, and that will be that. So another trip to Houston is in the near future, but hopefully it will yield good results.