Sunday, May 16, 2010

Just Another Day

It's about 70 degrees outside right now, and our youngest son is obviously impacted with heat intolerance. I wonder if a StaCool vest, or other type of cooling jacket/vest would help him. We went for a walk last week when the temperature was in the sixties, and he still was overheating. He doesn't actually walk with us. He still rides in the stroller. He has short stature, so his legs are small and he just tires easily. I still wonder if he is being affected by a mito issue, or if that doesn't play into this at all

Our youngest also is affected by the heat, but not as quickly as her brother. She seems to have more energy, but is not growing well either. She is nearly two years old (in just a few weeks) and has still not at twenty pounds. She did just have surgery two and half weeks ago which made her less willing to eat, but overall she has struggled to grow. We are considering a G-tube placement for a few months to give her a chance to get calories without having to work so hard for it. We aren't sure if we will go ahead with the idea, but are at least considering it.

We met with an endocrinologist who ordered labs and x-ray studies for these two. The x-ray studies don't show any significant delay in bone growth. We are still waiting to hear on the labs, but they have been done before and were on the lower end of normal last time. They are for insulin-like growth factor (something like that). The doctor says they will really just have them on their radar but will be conservative about any interventions. So other than the G-tube discussion, probably won't recommend anything else at this point. He says perhaps their smallness is a consequence of just the overall genetic make-up they inherited related to size, not some kind of indication there's a problem. I don't know, but these two seem excessively small to me. Not to mention our son who has food aversions and really doesn't eat much at all. I was surprised that the G-tube wasn't recommended for him, but the doctor says his height/weight proportion is actually about right. He didn't note his extremely large head circumference with this, which makes me wonder if the rest of him is supposed to be in ratio to his head, but his lack of eating well is keeping him from growing. I just worry.

In only five days, our youngest son will be 5 years old. He is still wearing size 2T pants. He weighs about 33lbs, and is about 38" tall. Our youngest will be two in a few weeks and is about 19.8lbs, and about 31" tall. She wears size 6-12mth clothes, although they are starting too look to short for her - but the larger clothes are too loose for her because she is too thin.