Monthly Archives: August 2013

Seattle

Most recently the family took at trip to Seattle to see Dr. Dobyns.  Dr. Dobyns is the expert on PMG.  We wanted to get as much information as we could about PMG, so we could help C as much as possible.  We did get lots of good information, but we also heard some pretty difficult things as well.

Here is what we learned:

  • Therapies are very important for C’s brain and will help him accomplish tasks, ie rolling, sitting
  • He most likely will not walk
  • He will most likely have very limited communication.  Probably through an Augmentative and Alternative Communication AAC Device or ASL American Sign Language
  • His whole brain is affected, 100%

Dr. Dobyns gave us a prognosis based on his extensive research regarding PMG, however, this does not determine what C will be able to accomplish.  We will not limit him by this prognosis.  We will continue to work hard and celebrate everything single accomplishment, big or small!

Please check out these other blogs, also children with PMG.

http://www.schuylersmonsterblog.com/

http://hudsonschallenge.wordpress.com/

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Chamberlain

Chamberlain is almost 14 months old.  He is the sweetest, cutest baby ever!  But being his mom does make me a bit bias.  As his parents, we have decided to create a blog for Chamberlain chronicling his life to share with family and friends.

Chamberlain was diagnosed with Polymicrogyria in March, 2013.  “Polymicrogyria- let’s break this big word down into it’s basic parts. “Poly” means many, “micro” means very small, and “gyria” is the medical term for the wrinkles in the brain. So we have “many very small wrinkles in the brain”. During the baby’s development in the uterus the nerve cells divide and make up the layers of the brain and make the wrinkles (gyri) of the brain. With PMG, that process is altered and it causes the brain to form improperly. It forms small wrinkles which don’t process the information it receives like a normally formed brain. This causes problems with functioning in the body much like a stroke can affect the brain. Depending on what part of the brain is involved and how severe the deformity is, results in the impairments that we see with PMG.”  This information was provided from http://pmgawareness.org/.  Please check out their site, lots of good information.

Since March, we have been going to lots of appointments and doing lots of therapies.  Our lives are not what we had expected or planned, but we love Chamberlain and enjoy everything he accomplishes.

We do not want to define Chamberlain by his diagnosis.  He is Chamberlain and he is his own person.  We will, however, do everything in our power to give him every advantage we possibly can.

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