I haven’t been around much lately, but hopefully some of you guys who have been around for awhile remember Claire. Claire took her very first independent steps today!!! We couldn’t be happier. She only traveled about 2 feet before sitting back down, but she was so proud of herself. She raised both arms up over her head and proclaimed “big girl!”
At 17 months, she is definitely over the worst of the reflux monster; still on Prevacid and a restricted diet (no dairy, soy, eggs, beef or wheat), but she spits up only occasionally now.
She talks and talks and talks. Its bizarre (yet really cool) to hear so many words and phrases coming out of such a little peanut. Her gross motor skills may be delayed, but her speech/language definitely is not!
After many months and many tests, Claire’s neurologist is fairly certain that she has a mitochondrial disorder. We will likely take her to see an expert (the expert, according to many) in Atlanta for a muscle biopsy to identify her specific mitochondrial disorder within the next year or so. In the meantime, the neurologist has her on levo-carnitine to boost her energy level/endurance and it seems to be helping. Next week, she will get AFOs (foot and ankle braces) to help her stand and walk more efficiently. No one can really prognosticate about what the future holds for Claire, but I am optimistic that her limitations/problems will be mild.
I hope all of you and your children are doing well. This board has been so incredibly helpful to me over the past year. The wisdom, tips, and support were invaluable.
.
)
YAY!