11/7/04

Sorry we haven't posted for a few days. The appoinment last Wednesday with the genetics specialist went well. We didn't really learn anything new, the doctors couldn't tell us anything definite because they don't know for sure. So we are just going to continue doing the course of action as we are and watch his development. They were pleased to see how much better he looks compared to how he looked in the hospital.
We're changing his meds a little, trying to figure out what mixture of meds will work best for him and keep him stable without pain. Nutritionally he's been given a microlipid to help him gain weight. He's also been given a new antibiotic which has been upsetting his stomach and causing pain. His doctor said that he'll probably be off and on with antibiotics which worries me.
We're setting a pattern of doctor visits almost daily or atleast 3 times a week. Hopefully things will settle in a little while.
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