We’ve seen two neurologists and a chiropractor this week with Kenny. We’ve learned some more, both good and not so good. Officially Kenny has what is called Unilateral Closed Lip Schizencephaly. This basically means that he has a cleft (crevice) in the right side of his brain where he isn’t supposed to have one. Also surrounding this cleft he has Polymicrogyria. Your brain has normal bumps (gyria) and indentations (sulci), but if the bumps are too small and thus too numerous you have polymicrogyria. So that is what Kenny has.
So what does it all mean? First he probably will continue to have problems with his left arm and hand. We will be working with a physical therapist and a chiropractor and hopefully there will be improvement. With regards to other motor skills, language, learning, etc. we won’t just don’t know what will happen. The only other major concern at the moment and for the future will be seizures. They are very likely with Kenny’s situation. Most seizures don’t affect one’s overall health, but you can pray about a type of seizure that only occurs before the age of 1 that can cause major health issues. Kenny hasn’t had any seizures yet and we are just praying that that will continue.
So what are we encouraged by? Well, we know a big God and we are thankful for him giving us Kenny and that Kenny in his hands. We (and the doctors) are encouraged by Kenny’s big head. He is in the 97th percentile for head size and big brains with problems are lots better then small brains with problems (these weren’t the doctor’s exact words J ). Kenny’s good nature and alertness are also good things. He reacts to the world around him just as well as any baby his age. Kenny is now sitting—that’s good. I guess to just sum it all up instead of going over every detail…both doctors said that he is normal from the outside except for his left hand.
Pray that we will take one day at a time. That we will cherish Kenny as a gift. That we will entrust him into God’s hands. That we will live with peace and not worry.
Thanks for reading, for your kind words, and your prayers.