I have been so busy and more than a little distracted lately; it has been hard to even find a moment to sit down and write. Hopefully things are settling down a bit and I can find a few more moments to post more regularly in upcoming days. For now…
Em has been doing water therapy for a couple weeks, she started May 30 – she has only been in the pool 4 times, two more and then she is reevaluated. That is just not enough time to make any progress and I hope that maybe we can do another month in the pool, but, sadly, that has not been our past experience. Last time, after a handful of sessions, she started saying that she was feeling more stable but then it was over. Very frustrating, but I always keep hoping that it will change at some point.
It feels like we are on a merry-go-round – she needs ongoing water therapy but the only access we have to a pool that is warm enough is through therapy. The doctors want her to exercise daily and have PT and so they occasionally order it for her when I ask, but she gets a month and then is done before she even starts to benefit and we all know what she really needs ongoing water therapy… And round we go.
Sometimes it is hard to write because it feels like nothing changes – I feel like I have been saying the same things for more than 2 years now. Logically, I know things have changed and mostly for the better; the improvements are real. But it still feels like we are spinning our wheels and that gets so frustrating. The whole PT/ exercise issue is one that we just go round and round on and never seem to get anywhere.
Anyway, so far, Em isn’t seeing any improvement from therapy but that is no surprise. She is just tired and ‘tireder’ after therapy. The water seems to help her joints be less painful at the moment, but she has the typical roaming pain afterwards; sometimes her hips, sometimes her knees, etc. The one joint that is consistently giving her problems is her big toe. I think we will mention it specifically to the PT when we go for the eval in a couple weeks because, although it sounds silly to complain about, it is an ongoing problem. It is no exaggeration to say that the feet are to the body what a foundation is to a house. Not sure if they can do anything for it, but it is something we need to address before it gets even worse.
I am planning on posting tomorrow about the Midodrine that Em has been taking. (Maybe by actually stating that I will post again tomorrow, I will feel obliged to do so!)