*Top picture, he just woke up with sleepy eyes 🙂 this image was captured by my daughter two days ago with her iPhone, I wanted to share his most recent photo.
I want to thank everyone for your kind support of Jaxson over the past year. He has been making great progress and I would like to take a moment here and brag like a proud grandma. Jaxson won his first swim event!! I say first because he is like a fish in the water and we want to encourage that with additional swim lessons and swim therapy. Ok, back to his big win-he raced against other children his age (non with disabilities), he had an aid that helped to turn him over so that he could take a few breaths, other than that he beat them all by a mile-well, maybe just a few feet!!! Tears of joy ran down my face the first time I saw the video. I was away when he raced but luckily my daughter video taped it.
Jaxson’s progress has been a long, slow, drawn out process but it has been progress and every bit of it has been worth the two surgeries. For those of you that are new to the blog and want to learn more about Jaxson and his journey click here. His muscles are developing and he has had a huge growth spurt. This year he started mainstream first grade and has a few of his friends from kindergarten in his class. He enjoys school and is happy every day that he gets off the bus. Jaxson is doing great in math and he is using a tablet (instead of writing as it is laborious for him to write) so that he can keep up with the other kids. My daughter hired a tutor for extra help to make sure he is keeping up.
Right now Jaxson uses his walker and can walk about 2000 steps at a time, however at school he uses a wheelchair. I am against the use of the wheelchair but the school feels that he takes too much time getting from one class to another. I don’t want him lagging behind so I guess it is ok, not great, but ok. My main concern is once in a wheelchair always in a wheelchair… If I sound more like his mother than grandmother it is only because I love him so dearly but I am 100% his grandmother as his mother and father set the boundaries and have to be tough on him -it’s my job to spoil him and I intend to do so! During all of this we (when I say we, I mean my daughter, her husband and I) are never once forgetting Tanner (his younger brother), he gets loads of attention and is about the cutest thing in the world. He just learned to swim and is fully potty trained and very proud of it!
We have been researching Stem Cell Therapy and its benefits for children with CP. My daughter made a conference call with a Dr. in California to set up Jaxson’s first Stem Cell Therapy. My fingers are crossed, she has been following a young girl that presents like Jaxson and she has done extremely well with the therapies; each time improving just a bit. I’ll be in Kenya during the conference call but I am hopeful that she can schedule the first treatment when I am home so that I can be there. Fingers crossed!
Through this all, my family feels truly blessed. During Jaxson’s hospital stays we have seen many children that have a lot less hope than Jaxson. And believe me, we count our lucky stars daily. One of the things that we can’t help but worry about is Jaxson gaining acceptance from his classmates. The thought of someone making fun of him for the challenges he faces breaks my heart. Please if you have children and have not already spoken to them–make them aware that everyone is different and everyone is good at something. Thanks and hugs, denise