Last week we had our appointment with the neurologist. He seemed excited to see us, the dr didn't even wait for the nurse to take us back, he came out to the waiting room to get us. When we got to the room he started to explain that Gabriel has "congenital myopathy". He said there are 7 different types, and he has gabriel narrowed down to 2. Mitochondrial related or a type of muscular dystrophy, but its not like the typical muscular dystrophy in the way its not degenritive. So the news sounds pretty good to me. I asked what's his prognosis is, dr said its hard to determine, in his 20+ yrs of practice he seen about 12 cases. They vary widely, from very mild disability to severly handicap, non-verbal and non-ambulatory. But Gabriel is very social and babbling and trying to communicate by waving and shaking his head no, so were very hopeful Gabriel will not be severe.. so now its a waiting game again for the pending results to see what type he has, about another month of waiting. But I have to say I am breathing much easier now, and will be patient.
Also the same day we had a repeat video swallow, way over due. Found out he was still aspirating, not suprised, but also silently aspirating on the consistantcy I was feeding him. Thank god he never had aspiration pneumonia. Very scary to find this out. So we are just adding more oatmeal to his pediasure bottles during the day, and he still gets the tube feed over night. Gabby has been doing really well with taking his bottles and not needing tube feeding during the day, now we need to get him to take more baby food in, ahhh one step at a time..
So anyways my little man is doing just fine! I love him sooo much!
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