Wednesday, September 28, 2011

Checkup Season

Partially because they're good physicians and partially because Collin is such an interesting and perplexing case, all of his doctors like to see him a minimum of every six months. Since they all like one of the yearly appointments to fall around his birthday, two months of our year are crammed with doctor visits. Here is a quick summary of our Second-Half-Of-2011-Checkup-Season.

Pediatrician - This was basically an overview of what's going on with all of Collin's specialists. Collin's pediatrician does a great job of keeping up with all of the tests and results and plans that all of his other doctors come up with and then formulating a more coherent overview. He did an exam and confirmed that Collin is a healthy boy and that he is continuing to progress developmentally. We also discussed handicap parking permits (another post for another time), sleep aids to help with Collin's inconsistent sleep cycle (he suggested melatonin over other options), and some therapy options.

Endocrinologist - Now that he has been on growth hormone for a couple of months, Collin's growth chart is looking much better. We will continue on the current dose and reassess in - you guessed it - 6 months. Side note: Collin is doing a great job growing lengthwise, but due to his new height and his increased physical activity, he is not gaining much weight and his fat stores are decreasing. We just bumped up his calories this week and are hoping to see a little bulk come back soon.

Geneticist - Because I ask a lot of questions and because there is so much uncertainty involved with Collin's case, I've sat through a lot of long appointments over the past few years. But this one stood out as the current winner, clocking in at a solid 2 hours. TWO. HOURS. None of that was waiting. All of it was talking. Needless to say, I'm a big fan of this doctor because he is so thorough and asks so many questions and entertains all of my questions with such seriousness. We left with a whole slew of blood work orders, including blood levels that can become problematic the longer you're on the ketogenic diet (copper, zinc, etc.) and a new panel of x-linked genetic disorders. He was very pleased with Collin's progress and spent a long time shaking him and yelling in his face in his Billy-Crystal-in-the-Princess-Bride voice, trying to get him to laugh.

Dentist - We found a new pediatric dentist who we ADORE. She has lots of experience with kiddos with special needs and was wonderful with Collin. She had spent the whole weekend sewing these special wipeable pillows to make the dentist chairs comfier for kids with sensory issues. You can see Collin here with his green pillow and smooth shades while he listened to Cars playing on the TV over his chair. The doctor assured us that the damage from Collin's incessant grinding is not worrisome at this point and she was very pleased with the health of his teeth and gums. He left with a whole bag of goodies, including a new t-shirt! Score!

Neurologist - It's always good to see Dr. Awesome. He was very happy with Collin's progress and said that as long as he continues to improve clinically, there is really no need to do a repeat MRI, especially since they have never been helpful to us in the past. He also brought up the W-word for the first time: wean. As in, from the ketogenic diet. In two appointments, if Collin is still seizure free, we will do an EEG and start talking about whether or not to continue on the diet. The very thought made my palms sweat. It's hard to imagine life without the scales and calculator and hyper vigilance. But I have months to get used to the idea.

Ophthalmologist - Collin's optic nerve is holding strong, in that it has not grown any more pale and he has not sustained any damage from his nightly use of oxygen (nor is he likely to, due to his age, the low flow of oxygen, and the fact that he only uses it when asleep). So, the doctor reiterated that Collin's vision is not nearly what we would like it to be, not because of his eye, but because of the vision center in his brain. Thanks for clearing that up, Doc.

Now that that's all behind us, our fall will hopefully be dedicated to some therapy, some down time, and lots of fun.

Tuesday, September 13, 2011

Vacay, Sweet Vacay

Hilton Head Island, SC - 2011