formats

Here is what I know:

  1. I serve an all-knowing God
  2. He is good…all the time.
  3. My son is missing his corpus callosum entirely. The technical name is complete agenesis of the corpus callosum. The CC connects the left and right hemispheres of the brain and facilitates communication between the two. It is a congenital birth defect and will not ever form. The colpocephaly is just a fancy new name for the ventriculomegaly. Where  VM is a general term for enlarged ventricles, colpocephaly  is a specific type of dilation – in this case the occipital horns of the lateral ventricles are enlarged to “fill in the space” left by the missing corpus callosum.

Thats it. How this will affect him, we have to wait and see. Each person’s brain is unique, and his will be no different in its uniqueness. He “could” have developmental delays, intelligence deficits, seizures, and a range of other complications. He “could” function typically for many years until symptoms develop. We just won’t know. But, we love him regardless, he has a super cute profile I can’t wait to kiss on, and just like our other kids, I’m excited to get him here safely and start getting to know him for who he is

Thanks for your prayers and all the well wishes and texts. He was super cooperative for the MRI, and I was only uncomfortable for about 20 minutes. The staff at CHOA Egleston were so comforting and amazing to this “non child patient”, it made me wish I could go there for all my health needs :) John asked me if it was normal to be hugged after this type of event. I think it definitely should be.

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