I just LOVE this video - it makes me smile every time I see it. For some reason I find it even funnier now considering I'm using it in a post on physical therapy. I must have a crazy sense of humor!
So, here's the update. Things had been going along just fine until right after Valentine's Day. The suddenly Bug started falling. The first few times it was once or twice, then last Tuesday she fell four times in one day, the final fall causing ankle swelling. That's when the light bulb went off and I thought "Hey - this isn't right!". Yes, sometimes I can be slow like that. ;)
We put her back in her AirCast ankle splint from her sprain last October, and sent her to school with instructions to not do PE or recess. I called the geneticist and they recommended she start back to PT to try to get some stability back in that ankle. Bug was also complaining of her hips being sore (front and back, both sides of her body), pain/discomfort behind both knees, and then her ankle on the right side. Her description to me was that it "feels like the bones are disconnecting". Which of these areas is the root problem I don't know, it could be a chain effect or it could just be all of them flaring up at once. The thing that was hard for me is that she describes it as if this has been going on (the pain) but it wasn't until she's falling down that she mentions it to me. So I'm left trying to figure out if there is an ongoing problem that she just doesn't complain about because it's now "normal" to her, or if she feels like it's been going on for a long time when really it's only been a week or two. She's gotten to where she hates me asking "too many questions", but at the same time I have a hard time knowing how to help her without asking. Ack!
Anyway... today we saw a local PT who seemed really nice. I decided I would rather try to find someone local who would be willing to learn about Ehlers-Danlos Syndrome than to try driving up to Iowa City again as we can and have less availability for therapy. I really like her so far, she was excited that we brought some articles in, she took a lot of notes, and wanted to talk to our old PT as well as the school PT. She also gave me her e-mail to send along more information on EDS. The icing on the cake was when she requested that we not start treatment until she met with us next, because she wanted to do some more research and talk to some people before doing anything with Bug, just to be safe. WOW! So, we head back Thursday to figure out what next. In the meantime, Bug is out of PE and recess again this week, and maybe longer. She's bummed, but hopefully she can do something fun but quiet during those times this week. I'm going to send in UNO tomorrow and have her ask her teacher if she can have a friend stay and play it with her so that it still feels like she is getting a break, but she isn't tempted to crawl on the floor and play.
Anyway, I'm not sure what lies ahead, but I am thinking/hoping we have found another helpful person to guide us through. It would be wonderful if this works out and we have someone local for anytime Bug needs PT or if we need advice on activities for her. I'm crossing my fingers!