Back in the spring, when school was in session and Steven had been through several rounds of chemo, he was complaining about some homework--a spelling test I think. "It's too hard!" he complained.
"Steven, you can do hard things! Look at you, you are doing chemo!" I countered.
"Chemo's not hard! I just show up at the hospital and they plug me in. That isn't hard."
Okay, so he had a point. I thought--wait until the surgery. Yet, even with that, he rebounded so well and got over his pain and problems so well---life seemed to be pretty smooth.
But here we meet the rocky part: physical therapy. Tears are finally falling over here--and not just from him. It is so hard for him to do. It hurts him so badly when he is doing it right. He hates to do the exercises. Currently we are working on a few things. One thing is stretching. The better he can straighten out his foot, the better his leg will work. His good foot stretches very well and this one did too, before the surgery. It has certainly gotten better since the cast first came off, but it still has a long way to go.
Another main goal is to get his foot accustomed to touch. The nerves in his foot just kind of "go crazy" (as he says) when someone or something touches the foot. He describes it like a really intense tickle. Sometimes when we massage his foot he cries and other times he laughs, but not in because he likes it. The more he touches his foot, the more the nerves should come to understand that it they are not in danger, or whatever it is the nerves are thinking. He is also taking neurontin to try to help with the neuropathy.
The third goal that we are working on is putting weight on the foot. Today at PT he got up to 28 lbs of pressure. Last week he was only up to 10 lbs. His current weight is around 60 lbs, so that is almost half--meaning he could pretty much stand. To walk, your leg needs to support all of your weight, so he has some work. He will most likely walk with crutches for months after he has his prosthetic leg.
There are other things that need to happen before he can walk well. He has to be able to move all the right muscles to make the foot move. He needs to strengthen his leg which hasn't born weight for three months now. He has lots of work left ahead of him.
I have said that physical therapy is the hardest, and believe me it is. It is really hard for me when I help him with his exercises. He seems to be getting more and more dramatic in the crys and painful looks. He resents me and all I am trying to do is my job in getting him well. Okay, I admit that I'm probably not handling it perfectly and he probably is clashing with my overbearance. Some days are better than others.
I take him to a place near my house and he likes the therapist there. He hates going, but I don't have to bribe him or force him to go. I have started just taking him there and picking him up. Not only is it easier than finding a sitter for three other kids, I think that it is better for Steven to not have me hovering. I may or may not be totally obsessed with the PT side of things and having me in the room must feel opressive to Steven.
I have talked to several rotationplasty moms and one that I talked to told me that her son kind of gave up physical therapy. He's doing okay, but it has been a few years and he isn't running yet. I think it is that story that scares me. More than him not having full function, I think I am afraid that he will give up. I'm not a giving up sort of person.
I'm getting ahead of myself now. He hasn't given up, he is still trying. I just hope he has the resolve to see it through. He will probably need a year of physical therapy, maybe even two to get the best use of his leg. I lose sleep at night wondering if he can see it through. And when I am stretching his leg and he has the look of a tortured prisoner, I wonder if I will have the resolve as well.
Like most of us, Steven prefers to do the things he is good at. Lucky for him, he is good at many things. He hasn't struggled much at school or with piano. Sports aren't his easiest, and so he does kind a of minimum required amount of those. But here comes physical therapy and finally the child has a real struggle. This will be his true test. Is he the kind of kid who will see it through--even though it is so hard? I hope so. Not only for my selfish reasons, but so that his life will be full of possiblities.
P.S. He has an appointment tomorrow morning with the prosthetist who will be making his leg at Shriner's hospital. If he is ready, they will cast a mold of his foot and begin making his leg. If he isn't, they will send us home for more therapy. I'll keep you posted!