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Tuesday, July 12, 2011

Things Coming Up for Carter

So this week has been a busy one so far with doctor appointments.  He had a second eye appointment on Monday, and everything looks good.  Yay!  I was worried he would need glasses.  Had another great appointment today, and we got a lot done and stuff coming up.

Swallow study- Carter is having one done this week to see how he swallows.  I'm not sure how exactly it works, but it sounds interesting.  His feeding specialist wanted to test it as well, because a lot of these kids have dysphagia (trouble swallowing) and hypotonia (low muscle tone).  He has preferred bottles over food for the last while, which has been a little frustrating.  Partly because he has to eat at least some food to get his medicine, and because he takes so long drinking a bottle.  Maybe we'll figure something out with this study.

Sleep study-  We want to have him observed overnight to see how he sleeps.  Since he wakes up a bit and seems restless, we want to see if there is something he needs.  His nurse mentioned that perhaps he just needs a little bit of oxygen at night, or maybe a weighted blanket or tighter shirt.  I'm interested to see what we find out.  Sometimes when I go in to check on him, I can hear him holding his breath for a few seconds.  We are trying to coordinate this study while he is inpatient there for the Ketogenic diet evaluation.

Ketogenic diet-  We meet with the doctor later this month to discuss if this could work for Carter.  It is a diet high in fat, regular protein and low in carbs.  I'm nervous at this point how it could help, since he isn't eating well.  Guess we will see.  I figure it's worth a shot if it can stop his seizures.

Here is just a cute picture of Carter- we cut his hair every few months because it gets so long.

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