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.