We finally received our dates for Addyson’s Trip to Boston Children’s Hospital. We are hopeful that they can help us find the tweaks needed to get her flush protocol correct. Since OCT she is still having issues noted on each X-ray. BOSTON is #1 for GI Motility disorders, so we are hopeful they can help. They are planning to do a colonoscopy, biopsy, motility testing and more. If you have seen the movie Miracles
In Heaven, this is the team we are going to see!!!! Here is a link to their page: http://www.childrenshospital.org/doctors/samuel-nurko. Please hold onto hope that BOSTON CHILDREN’S can provide her the relief
she needs. Life is becoming more medical for her and that’s not how we expected it to be post surgical. We were aiming for less hospital time.
We are hopeful….please help her through this stay, as hospital stays at her age are becoming harder.
We know a few others who are in very similar situations with their kids. We are hoping that all of our ostomy friends can get some relief