Okay, here is a post I've been avoiding for a long time. And it includes something new that I really hate to tell you, but even more so, hate that it happened. If you want to read that, skip to the end.
The big question on everyones minds, including my own, is "When will he be walking?" This is a difficult question. The answer that we have recently heard is that once he trusts his leg a little more and will step down into it with his weight, we will see that he will progress very quickly.
So, why doesn't he bear more weight on his leg? Well, there is the physcological side of it--I've heard that often amputees have a hard time trusting thier prosthetic. Plus, since his surgery seven months ago, he hasn't born a whole lot of weight on his leg, so there is some serious atrophy of the muscles.
Also, you can tell by the pictures of his leg, he can't stand up straight on his leg. The rotationplasty leg is longer with the prosthetic. His prosthetist believes that this is necessary to get his foot stretched out more. There is a difference of opinion here. Steven's orthepedic doc thinks that he would get better faster if he could stand up straight on his leg, meaning that his foot would stick out a little in the back. Does this make sense to anyone?
I asked the prosthetist about that, and he said that eventually, that is what they will do, but his hope is that having the leg how it is now will help him get more stretch, which translates into a bigger range of motion.
This is all very confusing to explain. When I have him at therpy or I am speaking with the prosthetist, I understand most of what they are telling me. But I have a hard time even retelling it to Rob. This week I made Rob take him to the appointment because I wanted him to have a better understanding of what is going on.
So, then there is the question, "Why can't he walk?" Well, his muscles just aren't strong enough to totally hold him up. The good news is that he is making progress. He can't put a lot more wieght on a scale now with his prosthetic leg than ever. He can put almost 50 lbs on the scale, but he now weighs over 65 lbs, so he is still a little short. He will "walk" without crutches sometimes, but it is a very severe limp, and you have to wonder if his amputated leg is doing any of the work.
I think one reason he is taking so long to rehab has to do with his personality. He wants to be just as fast as all the other kids, or actually, faster. So he often just crutches along, lifting his foot totally up, to be able to hurry. The more he takes short-cuts like these, the longer it will be until he walks. It is very difficult for even a very bright 9 year old like Steven to wrap his mind around the idea of sacrificing some speed now to be walking sooner.
One of the ways that Steven does therpy is to play the wii fit. It has a balance board that can feel where his center of motion is and if he leans to one side or the other. It is really a brilliant therapy tool--he can tell that he is getting better because it gives him a score and even tracks the scores. Also, there are many games that encourage him to lean to either side or to balance in the center--like the snowball fight or the hula hoop. That way he can try to beat his old score and try harder.
So, my really sad story beings with the wii fit. He had done an intense morning of physical therapy and had moved onto the wii fit. At some point, Andrew (the little brother), nudged him with his foot (probably trying to prevent him from getting the high score) and tipped Steven off of the two inch balance board. Steven started screaming like crazy and the long story short is that his leg is broken.
Okay, so how embarssaing is that to break your leg playing the Nintendo? But beyond embarassing, this is going to be a huge setback for physical therapy. When will he walk? Suddenly I know that it won't be in the next month. Or maybe many after that.
This is upsetting in so many ways. I cry every time I think of it. Is he that fragile that a little upset like that will cause such a huge setback? Are his bones weak from so many months of underuse? How will he trust his leg now? What will his muscles do? This has been a fear of mine from the beginning. He has had several falls, none which resulted in breaks, but they still set him back a while. His last fall before this made me really consider the mechanics of it. I mean--think of how his prosthetic can act as a lever to cause some serious damage if he were to twist it. It makes me worried--wondering if this could happen again.
Rob spent half the day at the ER with Steven. What he has is a compression fracture inbetween two of the screws in his leg. The docs at the ER wrapped his leg in a splint and told us to give him pain medicationas and to see his orthopedic doc on Monday. We will have more answers whenever we see him--like when will he be able to put weight on his leg? I wish we could hear the answer to this one, "When will he be walking?"