Hi Blog Readers,

It has been a while since I have given an update on G-man. There are a lot of really good things going on for our little guy.

  • He is doing so well with his physical coordination that he no longer qualifies for Physical therapy at school.  YIPPEE! (the primary purpose for school PT is whether he can safely navigate the classroom environment)
  • His 6 month pulmonology (lungs/breathing) appointment went VERY well. Dr. Taylor at Children’s Mercy is FANTASTIC and went out of her way to say how excited she was at G’s health and progress. The G-tube and Occupational Therapy for swallowing, chewing, mouth strengthening have taken care of all the aspiration issues. We are very hopeful to totally avoid pneumonia this year because of these measures.
  • He continues to develop in new skills interpersonally, academically and developmentally. He put on his coat independently several days ago, as if he had done it 100 times! It is really exciting to see him easily accomplish tasks the entail complex motor planning. It shows that his brain is making those connections, retaining them and recalling them when needed! WHOOP! WHOOP!

He has had a few more seizures or seizure type things since our last post in Oct. It is hard to tell what is a seizure and what is some other random thing. Most importantly to us, we have not seen any typical  prolonged grand/mal or drop seizures. We have not had to use rescue meds or call 911. It is a constant balancing act of intentionally moving forward, yet being aware and prepared for if the bottom falls out again (because with Doose that is always a real and scary possibility).

I’m still not at a point of having photos organized to easily get in the blog, but I wanted to share  at least one photo. Here he is happy to be eating strawberries! (I still find myself daily thankful that he can eat regularly! It has been almost a year since he came off the keto diet, but I still get excited that he can eat as many strawberries as he wants!)