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.
The Chronicles of Chamberlain 
You have the perfect attitude about his prognosis! I am confident Chamberlain will accomplish so many things. He has wonderful parents helping him along the way. Please don’t forget I am here if you need to talk. You will all be in my prayers.
Chamberlain is blessed to have you both by his side, learning everything you can about PMG.
he is a sweet and happy little boy who has awesome parents! thank you for sharing your story with us. i can’t wait to celebrate his milestones with you! –E
Jenna – your strength and courage is remarkable. Hang in there – he a lucky little boy to have such amazing parents! Praying for all of you.
Love my little work grandbaby so much – He is blessed to have such a fighter mom in his corner! You, Jeff and Chamberlain are in my thoughts daily, look forward to celebrating his accomplishments!
Jenna, thanks for sharing about Chamberlain. It must have been a hard decision to share so openly, but knowledge is power and you couldn’t work at a better place when facing life struggles. We will all wrap our arms, hearts and prayers around your family and celebrate C as he achieves milestones along the way.
Chamberlain is such a little sweetheart! We love him so much and are so moved that you both have chosen to share this most difficult news with those who love and care about each of you. Chamberlain is so fortunate to have such wonderful, nurturing parents as well as a tremendous circle of family and friends to pray and hold you close in our hearts. We are with you every step of this journey. Love, Mom and Dad