5-31-12 Ally update – another hip fracture : (

Ally update (one I sent to school)– Ally went to her orthopedic surgeon yesterday and she officially does have a fracture in her right hip (in September it was her left). This one is straight across and so they are just having her wear a LARGE splint across her behind and right leg for four more weeks and then more xrays. She started the splint last week when we saw another surgeon. She is dealing with quite a lot of pain with movement, so we are trying to do minimal. I’m VERY sad to say that I don’t know when she will be back in school. I’m hoping we will be able to attend a few days or 1/2 days before the end of the school year and 99% graduation, but she would remain in her stroller/wheelchair and diaper changes are super hard and painful. At this point we are alternating Motrin and Tylenol with codeine (not round the clock, but pretty often).

Nothing specific has caused her fractures, just regular movement can cause it since her bones are sooooooo tiny and brittle. We are actively exploring infusions to make her bones stronger since other sma kids are doing this around the country, but Childrens Memorial has not and hasn’t wanted to do them yet on Ally or sma children. We need to do something proactively, as its so unfair and heartbreaking to see Ally in pain (and also missing out on fun with her classmates and family).