We went to meet with Colton Neuroglogist to have our usually meeting with him every 2-3 months and to go over Colton lastest MRI. First Dr. Peterson checked out Colton see what he could do and how he reacted to different things. As he was examining him he kept saying normal, normal, normal... hmmm, normal. He told us looking at Colton MRI and seeing what he can do it doesn't match up.. which is a great thing! Colton is doing a lot of what an average 6 monthish baby should do. He has great social skills, and is reaching for toys and really noticing what is going on around him. The only thing Colton is lacking a little is big muscle strength. He should be starting to push up a little more on his hands and sitting a little better. But for what he has been through and how his brain looks, he is doing amazing! No stiff muscles or using one side more then the other or anything like that. Which is amazing news! I love to hear that he is doing so well!! And to hear the word "normal" is so refreshing to me, normal can have such a range but for Colton to be anywhere near "normal", whatever that may mean, is really strange to hear. Colton is far from any "normal" baby but with everything all the doctors were telling me while I was pregnant just brings tears to my eyes and takes my breathe away just to know that he is doing things that they didn't expect him to do. Colton will be Colton and he will show us what he is capable of, and not matter what his capability is we will love him more then anything and we will always be so very proud of him.
Colton is still stumping all the doctors on what his Diagnosis is. We have heard a bunch of terms thrown at us but it seems like every time we see a doctor a new one is put out there... So brad came up with a great term.. Colton-cephaly... and that is just what we are going to call it for now. I don't think Colton will ever have just one DX he has a few different characteristics of a bunch of different brain abnormalities. Here is a list of some of what they think Colton has (because at this point I don't think they are very sure on anything):
- Hydrocephalus
- Septo-optic dysplasia
- Optic nerve hypoplasia
- absence of Septum pellucidum
- He has a "fold" in the back right part of his brain and some extra fluid there. (maybe schizencephaly, or holoprosencephaly, but they don't think either one)
- chiari malformation type 1
- partial agenesis of the corpus callosum
- calcium deposits on brain
-missing part of his skull bone
I honestly am not sure if any of these terms over lap each other or not, to me a few of them sound very similar, he has a lot going on with his optical nerve. But his brain is looking better, expanded a lot more and the part that isn't developed right is changing. He has brain and LOTS of it!!!! So for now this is kinda what is going on with him, but he has the doctors stumped again. They really don't know what Colton DX is... so for now Colton-cephaly it is!
in the waiting room at the Neurologist:
Playing with Daddy while we wait:
