June is a big medical month for William.
First, William has his second wheelchair fitting. The vendor is going to loan us a chair while William's chair is being customized. At this point, it appears that we will get a stroller type wheelchair. We will then transition into a power-chair in a couple of years.
We have a sleep study scheduled in a couple of weeks. The sleep study will not only determine if William is breathing sufficiently at night, but will also measure reflux. William requires oxygen at night, but the study will determine if more oxygen or ventilator / trach is needed. They will also measure the amount of reflux he is experiencing. If reflux is an issue, they will close the entrance to his stomach to prevent any acid or stomach contents from coming up. William is doing very well and we are hoping that the treatment plan will be to continue with the current plan.
Finally, we are seeing the ENT. William has had ear infections that are not going away with antibiotics. He will be evaluated to determine if tubes are needed.
Overall, William is doing great. His strength is improving and he is starting to roll towards objects. He has improved ability to sit with significant support. Hopefully the new wheelchair will allow him to sit-up for longer periods of time and view the world.
As we enter the warmer months we are now able to take William out of the house. Last weekend I took him to Lowe's. He was happy to see something other than the inside of our house. I enjoyed watching him take in all of the people.
In the coming months we plan on starting a fundraising effort to aid the researchers searching for a cure. Hopefully a roll out of this program will be ready by mid-July.
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