Goals and PT

I've never been one that has really liked setting goals. I think it all started back when I was a teenager and life seemed to be all about setting goals. It seems like if I plan to do something and work toward it, I get it done, but as soon as I "set a goal" to accomplish something, I fail. I know it is probably just some lame mental block in my head, but that is how it is for me. So, for many years now I have avoided setting goals. Well, today I have a whole new reason to dislike goals. Annalise began physical therapy today. I am very amazed and grateful that she has been able to get started so quickly, but these therapies can be brutal on the heart strings. The therapists had names for almost all of the little strange things I have begun to see Annalise doing. I was hoping that they were just things that I was imagining, but no such luck. They said that she is really beginning to compensate for the loss of strength that is occurring throughout her body. As part of her therapy, we had to come up with goals for her to work on. Of course the state wants us to set goals of progression. Well, unfortunately those are hard to set when you are working with something like Leukodystrophy. They don't progress, they regress...and it sucks!

There were two therapists here today working with Bryce and Annalise and working on coming up with realistic, attainable goals. The therapist we work with is awesome, but it was so hard to hear her and the other one who came along talk of the things that Annalise is not able to do and of the things she may never be able to do or will soon no longer be able to do. Many of these things she was doing just a few short months ago, some just a few days ago. This week has been a bad one for her. I know what they are saying is true and we have to be realistic when making plans for them, but it is so hard to wrap my head and heart around what is happening. I still just don't want to believe it. I finally got to a place where I could accept it with Bryce (not like it, but at least accept it) and have been a little more able to work with it from that point, but going through it all over again, is torture! Knowing what is coming and not being able to stop it just makes me crazy!

Annalise's legs have been very stiff the last couple of days. She is still walking, but has begun crawling a lot more or just standing and crying when she just can't seem to get her legs to do what they are suppose to. She really struggles with getting up from the floor now and sitting and rolling over are becoming much more difficult for her. She is losing strength in her trunk muscles. The spactisity in her legs has increased. She also seems to be in some pain. She has been waking up at night the past couple of nights and it is just so pitiful to see her try to roll over in her crib or get up on her own. It is becoming so difficult for her. She cries and I cry with her.

Now Bryce on the other hand is doing quite well. He is definitely on a peak right now, although he too has been in a bit more pain the last few days due to increased spactisity and tight muscle tone. His OT said that the cold weather may be making it worse. Hopefully we will be back to our 70 degree weather again soon! He does have a low dose of Valium that seems to help with the muscle spasms while he sleeps. He is working really well with Tess, his new PT. He has had a bit more strength in his neck and trunk muscles and moves all over the place when he is on the floor. He has almost rolled up onto his side a couple of times. If only he could get that arm out of the way, he would be rolling over. With help from me or the PT he is able to roll and he loves it.