After reading a post from an amazing mom who also has a little girl with Rett (Thanks Bridget), I find myself very inspired to step it up with Abby also. It is hard to stay motivated to make Abby work and work and work when evidence of progress is hard to find. This is especially true for me when it comes to physical therapy. For the past 3 years, Abby has had PT on at least a weekly basis. Some of the time has been in the clinic and some of the time has been on a horse. I have been so happy with all her physical therapists. They have given me lots of strategies to help her maintain and improve her walking, balance, flexibility, and strength. Even with amazing therapists, follow-through at home, and lot of hard work from Abby, she was still better off before we started. It feels at times like we are fighting a losing battle.
Here's the thing, though. It's not hopeless for a couple of different reasons. Regression doesn't last forever and regaining lost skills is possible. And if it is possible then how can we not keep trying, right? Sometimes it seems futile to help her walk up every step of our stairs every time when go up every day. It would be much easier to carry her. But, if facilitating her so that she weight shifts, so that she trains her muscles to make the movements without having to "plan" them out, that would be something worth while. Even if she doesn't walk up the stairs independently. If she doesn't loose the ability to put each leg up to the next step, that would be something. Trying the same thing over and over again can only help. And she deserves it. Also, I am confident that there will be a treatment or a cure that will radically change Abby's life. I want her body to be ready, to be strong.
The problem I have had recently is that I lose track of all the exercises that we should do every day. I have an ongoing list in my head of things that are helpful. When she sits on the potty, I stretch her heelcords. When she watches TV, she get E-stim for 30 minutes. She gets on the treadmill a few times a day for a few minutes, walks up the stairs when there's time, bears weight on her hands when she will tolerate being on all 4's, practicing sitting to standing whenever possible and on and on. The list has been accumulating over the past 3 years.
I think its overwhelming because this list is only in my head, completely unorganized. I used to have a list for each of Abby's therapies in the past, mostly to let each therapist know what she is working on in her other therapies. It's time to make them again. If I had a list of things to do with Abby everyday, maybe I could fit it all in. So often, I go to bed feeling guilty because I forgot or didn't have the time to do everything. My goal this week is to talk to Abby's PT about this. Hopefully, she can help me come up with a realistic schedule of all the things we need to do.
That's the plan.