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.