One year ago today, Jaxon endured 16 hours in the operating room for one of the most life changing brain operations we could ever imagine. The indecision and unknown of whether the incredibly complex hemispherotomy would be a success weighed heavy on our entire family. He wasn’t having breakout seizures, but the diagnosis was and is a surgical diagnosis. Witnessing the progress he’s been able to make this past year is unbelievable.
I can honestly say Morgan is the sole reason for his progress. She left her job, has turned over every stone and opened every door for Jaxon to have the best chance at life. Therapies are not only hard on the patient, but it puts a lot of pressure on the parents. She gets on every playground when he needs help, ensuring other kids know how to play with him. She’s become an amazing advocate for Jaxon and all parents and kids with special needs.
Jaxon started school at a fully integrated pre-K program this fall in which he's not the only child with special needs. The transition to this school has been great, and he seems to love going every day. His teachers have done a great job learning how to communicate with him and support his needs to ensure he has the best learning environment possible. We're lucky to live in a state like Colorado where we have access to resources to give Jaxon the best shot in his long development journey.
Jaxon is currently building an awesome relationship with his sister Hadley. His communication has come a long way and he's saying more words and communicating more with us every day. We still have to initiate the use of his left arm and hand, but hoping that will come in time. His walking has developed into a run, and Morgan has done a great job with his therapists working on his balance and strength with his left side.
Jaxon’s diagnosis will always pose challenges throughout his life. It’s never going to be easy, but today we celebrate one year of seizure freedom and one year of unreal cognitive and physical development.
Cheers to you buddy, one of the happiest kids I’ll ever know! Here’s to another year of one step and one day at a time!
We are SO proud of you Jaxon!!! We are SO proud of you Morgan and Ben!! We understand that this journey has not been easy. It has likely exhausted every place in your head and every bone in your body. But, kept your heart incredibly full. You both are astounding parents, and I agree with Ben’s declaration that Morgan, you are one hell of a mother. We love you all and will continue to support you each and every day.
The Dallows