They also sent us home with a disc of all X-ray images and a fracture kit with splinting supplies to have on hand for her next fracture! We’ve already compiled a kit of our own but we can never have too much and this would have been very helpful to have from our OI clinic in Denver that we saw back in May.
While here she’s had X-rays, Dexa scan, met the orthopedic surgeons, saw a dietitian, pediatric dentist, PT, OT, social worker, endocrinologist, geneticist, and audiologist.
The surgery is a go and the doctors seem confident that it is both necessary and very do-able. This is not the impression we were given in Denver and I was basically told not to expect or hope for her to ever be mobile! 😡They acknowledge that she is a difficult and certainly not a typical case due to her previous fractures and the kind of bones her OI type has. They see more OI kids than any other clinic in the US and even then they only see about 250. Of those, they’ve only had 4 that are Suzie’s type of OI. It was great confirmation that we were right to take her here to have her seen by the best! The plan is surgery on Tuesday to put telescoping rods in both femurs and one tibia, but they will take it one bone at a time.
She is doing great and because the place we are staying has a playroom, she’s staying she loves trips! 😆 Initially she was asking to go home a lot but is warming up to the hospital staff some and was charming people by the end of the day. She doesn’t understand what we are doing or why. I’m excited and nervous for the surgery as it is quite major and anxious to have this all behind us!
 |
| not excited about x-rays |
 |
| playing games in the waiting room |
 |
| ready for another day |
 |
| stockpiling her favorite food |
 |
| hair washing |
No comments:
Post a Comment