First of all, I want to apologize for the lack of updates. I really wanted to keep everybody up to date on all Jaxon’s Adventures and how he is doing but honestly, running it through the blog is super challenging. One, because he is doing so well and developing quite well; it takes a while for me to gather enough things to write about. And then by the time I’ve done that it seems like it takes me forever to gather my thoughts enough to write them down that too much time has passed.
So, from now on I will be updating Jaxon’s Spina Bifida Adventure through his own brand new Facebook page Jaxon’s SB Adventure!! I feel like using Facebook will allow me to post quick little updates as they happen vs trying to wait for me to have enough to write an entire blog post about. Plus, I can easily update those from my phone almost anywhere. Where as these long blog posts typically require a quiet room, my laptop and free time. Which as you can imagine, is difficult to come by!
Okay so here we go. A quick and fast view of the last six months.
He is so amazing! Jaxon is just like your typical two-year old. He is climbing on things he shouldn’t. He gets into cabinets when he knows he shouldn’t. And he is just so STUBBORN! This is an amazing thing when it comes to his “disability” because if he wants to do it; he is going to do it. However, when it comes to his sister and discipline… the stubbornness can be challenging. Typical terrible twos.
We have dropped his bracing down to SMO braces vs. the DAFOS he did have. These are smaller and provide less support which allows him to keep developing his muscles and ankle movement. He loves his SMO’s he picked a Spiderman design to have on them. The only problem is that because the braces are so small you can barely see a whole spider man.
Jaxon still faces bowel problems. We flux between too much and not enough poo but we are managing it. I feel like we have it better under control now but it has been an ongoing issue for the last few months.
We visiting Spina Bifida Clinic back in September with no real news from Urology, Neurology, or Dr. Alexander.
However, the orthopedist feels that Jaxon’s legs were turning slighting. The Right leg turns in and the left leg turns out. At the time of this appointment I had never noticed this however since the appointment we noticed it quite a bit more frequently. Then, Jaxon began to fall a lot. He kept tripping over his feet. The turning in was getting worse. Our physical therapist suggested that we try some night splints. We are still waiting for those to come in. You can see how his leg is turning in while he is sitting. He does this while walking as well.
While we were at clinic it was also suggested that we have Jaxon reevaluated for Occupational Therapy. They noticed some slight delays with fine motor movements and we had some concerns with his feeding. Jaxon was re-evaluated through the CDSA and qualified for OT. We are waiting for paperwork to be pushed through so that we may begin these services.
I think that roughly covers the newest information updates from Jaxon. Please follow us on Facebook to continue following Jaxon’s journey. I started this blog because I really want to provide encouragement for other parents who may be receiving the diagnosis of Spina Bifida as well as allow friends and family to follow Jaxon’s Adventure. I hope through our blog and the Facebook page that we can continue to do that. All the old posts will remain up as I feel these are important parts of the adventure and I do not wish to have to rewrite them all.