To start, I just want to say the my daughter is doing so much better after her six week stay up at Boston Children’s. The program and doctors and her team were wonderful and it is such a night and day difference, now two and a half months after, from where we were when she was accepted.

I had meant to write updates during the process, but the intensity caught me off guard I had no energy for anything other than the essentials. By the end of it all I was burnt out.

We had her first follow-up after leaving the program on Friday and I finally had it in me to sit down and write this update. …