CHOP - Neurology

Today we had our neurology appointment at CHOP for Abby. Our doc was terrific and we liked him very much. We spent about half an hour reviewing our history, the details of my pregnancy and birth, everything we have been through with Abby and all the previous tests and appointments. Finally we got the full story of what they saw on our CT scan from December. Abby has enlarged 3rd and 4th ventricles with a scant amount of excess cerebrospinal fluid in the frontal lobes. They also felt that she may have some degree of posterior corpus callosum hypoplaysia/dysplasia. Briefly that means that the back part of her corpus callosum (which is the structure that coordinated neural impulses between the two lobes of the brain) is slightly malformed. In terms of what this means for her development it is hard to tell right now. The neurologist felt that the implications are most likely all motor (thank God not cognitive). I felt very lucky that I have a good knowledge of brain structure and function from my background. Otherwise I would have been lost and very scared.

The plan right now is to get an MRI (for which she will need to be sedated, which I hate), have PT in the house every week, assessment for OT and speech therapy, audiology assessment, eye assessment next week, depending upon the outcome of the MRI they may have us meet with a geneticist to check for any possible genetic cause (rare, but slightly possible according to the doc) and then we will meet back with the neurologist to figure out where we go from there.

I am thankful that most of this will be motor delays and not cognitive. We have a lot of work ahead of us and it is going to be tough but so worth it. Abigail is such an amazing little person. I hate that she has to go through all this. I hate that life is tough for her. I hate that the simple act of rolling over is 100 times more hard than it should be. I just know that God knew she was a fighter and knew she could battle through it. As worried as I am for her I feel so lucky to be her and Gracie's Mom.