We had premature twins at 25weeks. Our daughter is doing quite well, but our son had a tough time in the NICU. He got very sick while in the NICU and his kidneys shut down completely for 8 days. We were told he would not survive, but miraculously he did. During an MRI to check a vocal cord issue (his right vocal cord is partially paralyzed) it was determined that he suffered a stroke while he was so very ill and now suffers from sever encephalomalacia. At least 50% of his brain is affected and all areas. This was as shocking to the doctors and nurses as it was for us because he behaves perfectly normal. He is almost 5months old now, but he was premature so his milestones are based on his adjusted age. We met with a neurologist and the prognosis was very discouraging. We met with a developmental doctor while in the hospital and we have our next appointment as an outpatient on Dec 7th. How are things going with your son? Have you found anything helpful that we should look into?
I am sorry ,this is very complex , it would be better to discuss this with your Doctor , has he suggested any treatment to you ? We also have a Neurology forum on Med Help you may want to put your question there...good luck