Since August of 2016, Heather has been in constant pain and has not been able to walk unaided. She spent all of her 8th grade year on crutches and missed over 60 days of school due to her pain. She managed to keep her grades up despite everything she was dealing with. Currently, she is on a large daily dose of painkillers and attends physical therapy twice weekly. Each day she takes 15 different medications for pain and swelling.
In April, we traveled to Boston so Heather could meet with the team at Boston Children's Pediatric Pain Rehabilitation Clinic. After an intense visit, they informed us that they would only invite Heather back if she made some progress in her physical therapy. Since then, she has been diligent with her PT practice and is now walking on her own, but still has trouble with steps and continues to be in pretty much constant pain.
We got the call the other day from Boston Children's Hospital that Heather had been accepted into their program. There is currently about a month long wait list until she can begin. This is a 6-week outpatient program that normally would be entirely covered by Insurance. However, because it is outpatient and we live in Maryland, we will incur about $4500 in temporary living expenses and roughly $2000 (air fare and rental car) transportation costs that will not be covered by insurance. We investigated the Ronald McDonald house, but they only accept cancer and transplant patients, so we are facing several thousand dollars to stay in Boston during Heather’s treatment at the Pain Rehabilitation Program.