COMPLETELY FORGOT to share some great news!! We have recently put together a packet of all of Braxton’s medical records [which is a lot for his short life] and sent them off to the National Institutes of Health’s Undiagnosed Disease Program! The NIH has a research program to help those in search of a diagnosis. The program is very selective and only invites a small number of people to be part of their initiatives. If selected, we would travel to Maryland for further testing and evaluation and hopefully find a diagnosis, or at least be a step closer, and the best part is all testing and travel would be FREE!! This is an amazing opportunity and hopefully Braxton will be selected to participate. It takes about 8 – 12 weeks to find out if we have even been selected. *Fingers Crossed*
We are also in the process of looking for a second opinion from a geneticist. Not that we are unhappy with ours, I just feel that two heads are better than one, so maybe someone with a fresh look could offer a different opinion. I’m starting to feel like we NEED to find a diagnosis. I was overwhelmed at first and had to step back and just be ok with Braxton not being diagnosed and just being happy with him growing and thriving, but the need for answers has returned. Sixteen months have passed and I feel like we know nothing more than we did when Braxton was born, if anything, I have even more questions. I am absolutely thrilled that he is always so happy and that he is continuing to grow and make such progress, but I really want to get to the bottom of what’s going on. Hopefully something comes of these efforts and we finally get Braxton diagnosed. I can’t bear the thought of going years and years not knowing, hopefully…soon.
We’ve also finally got everything settled with services at the new house through ECI [Early Childhood Intervention]. Since we moved into a different county we had to have everything transferred over and it took some time to be able to coordinate everything again. Soooo, that means we’re back to the madness of trying to coordinate home visits with everyone. Not only do we have Speech, OT and PT twice a week, we’re now coordinating Vision Therapy, Hearing Services, and Orientation & Mobility services 3-4 times a month. It’s definitely crazy, but we want to make sure we do everything possible to give Braxton the best chance at success. I’m thankful the schedule we have allows us to be able to somehow fit all of this in. Joseph is amazing when he is home with keeping Braxton at home and making sure he gets to all of his appointments on his week off. Luckily, all of our therapies are in home, but it’s still kind of hectic when you have several visits in one day. At the end of the day, as long as Braxton continues to make progress we’re going to continue to do everything we can to keep it up. After all, that’s what parents are supposed to do…ensure your child has all the tools available for success. We can’t do it for them, but we have to be enable and empower them to do it all on their own.
The post would not be complete without pictures of our handsome little man 😉