Wow - it's weird looking back and realizing that what has felt like a couple of weeks of ankle issues has been going on for almost 2 months now. It's hard to believe that with all of the time that has passed we are still having such a hard time. Thank you to those of you who wondered what's new, and pointed out I haven't updated lately. It's nice to have a kick in the butt from time to time! :)
So, I'll try to bring you all up to date. After Bug started having her ankle randomly "give out" in early Feb. I did take her to a local PT instead of trying to make the trek to Iowa City for PT again. I am thrilled about this decision for so many reasons, the most important one being that the PT we have is AWESOME!!! She is just so good about researching EDS (online, talking to various doctors, whatever she can get her hands on) and on being creative in trying to make boring exercises more interesting to Bug. She speaks directly to Bug and listens to what she says about her body, and adjusts from there. She even attended a meeting with our school yesterday. (more on that later) On top of her just being plain wonderful, she is close-by, which has been such a blessing considering we've now gone to PT for 11 times (if my count is correct). After going twice a week, practicing at home, bracing, and skipping recess and gym, we still aren't close to done. While it would be easy to get depressed over this fact, I am not. I am just too happy over finding another great member to add to our team - someone who my daughter enjoys working with, and who I respect and trust. It's amazing how big of a difference that can make in your attitude when dealing with long-term medical issues!
So - I've videoed a few of the exercises that the PT has been doing with Bug. There are many others to video, but it's hard to do as I need to spot Bug. ;) I'll try to do some more as I can, and I'll try to post some of what I have here later tonight. In the meantime, the main issue we are having is her ankle is still weak. She has a very hard time maintaining control of it, and she doesn't usually last more than 10 reps of anything. Most things she has a hard time getting to 10 movements correctly. One example is kicking a beach ball while keeping her ankle straight. It sounds so easy but it is hard for her. Her left foot does so much better than the right...
Right now I am not sure how much longer it is going to take to get her ankle healthy. I'm not sure if the PT knows yet either. Right now she still needs it braced, and her activities limited. (more on that when I write about school) The PT has also been working with her on her posture, balance, and her hips/abs a little. It seems like the list of what we could be working on is endless - and I'm not sure what we should be doing in the "big picture". However, I am happy to have a PT who is looking at Bug's whole body and not just the ankle we came in for. I am hoping we can continue to work on the other things as well because I really think Bug's best chance at a happy, healthy young adulthood is going to depend on having strong muscles to help her joints. At least I can hope that good muscle strength will help!