Wednesday, January 14, 2009

MRI Results, the Bumpy Road goes on...

Chase had an MRI last week with the understanding that he has some mild CP. Tuesday morning the Dr. from the developmental clinic called me. His words were "Chase's MRI was much more involved than we expected and very hard to explain". Between my conversation with him, and an emergency visit this morning to the angel of a doctor, Dr. Robinson, from genetics, I can explain it like this...Chase has what is called cerebellar hypoplasia. This normally means a small cerebellum that is underdeveloped. Chase likes to get lots of attention though...and his doctors so far agree, they have NEVER seen this...but he has NO cerebellum. Instead he has an empty pocket of fluid at the back of his brain. The MRI report says "absent cerebellum with small pons" for our doctor friends to understand.

Dr. Robinson said this morning that had he seen the MRI without knowing Chase, he would not be surprised if it were the MRI of a child in a vegetative state. He also said Chase is "paradoxical"...he is doing way too much to fit the MRI...he has personality, laughs all day, says mama, dada, baba, hi....and loves to

He won't be able to walk, the cerebellum controls balance, but we have a super cool wheelchair coming our way in the near future. We see ramps and larger vehicles in our future.

As far as intelligence, the general feeling is since we Brittons are so smart, he has hope. It is a good possibility though that he is progressing now, but will reach 3 or 4 and plateau. No one far no one in our area has seen this...they can't give us a expectancy...anything.

I can't believe I'm having to email this, but everyone will know eventually, so I thought this was the easiest way.

Dr. Robinson did lots of DNA tests this morning that may give us more information, and we see Neurology next Wednesday. Hopefully they will send us wherever we need to go in the country to find someone familiar with this.

My pregnancy had NOTHING to do with this. All of this would have occured between 8-12 weeks of pregnancy (brain development and vision as well). Honestly I was happy to learn that I didn't hurt him.

We will update as we know more, just remember, he is a gift and SOOOO loved!!!!! I promise that will never change, we are so unbelievably happy and blessed to have him.

1 comment:

  1. Heather, my heart is breaking for you! I know this must be hard, but I thought the same thing when you posted this on the board, " if he has NO cerebellum, why is he doing so well!?" He is such a miracle. If they wind up sending you to CHOP, let me know, If you're there for a bit, I would love to arrange to finally meet that little miracle! I am only about 45 minutes away from CHOP.