Off to Boston we went today!
We saw Metabolism first. The nurse said that he looks great, he has great muscle tone, his color is good, he's very social (especially to the young semi-attractive nurse that came along) and he looks like he's a good size )with the cheeks and chunky thighs! The doctor came in and we talked about supplements that they may start Dean on that could help-but definitely wouldn't hurt-but they need to talk with Cardiology first. So, nothing really new on that front.
Talked with their (metabolism's) nutritionist next. She gave us a scale so that we didn't have to measure out formula the way that we have been (1 cup, 1 Tbsp -or 17 Tbsp of formula). I've tried it since then and it's much more simple and straightforward. She said that we will talk about the transition to solid foods (or the start of it at least) at the next visit (at 6 months), but that we need to focus on getting more calories in him, which means we have to try to get him to eat more often.
The lady from Genetics came next, she didn't have much more to tell us. However, it seems as if Dean's mutation is not documented for Barth Syndrome, and that he was diagnosed mostly on symptoms. Tho, I admit I may have that mixed up. I guess that I'll need Jim to explain it to me again.
