Sympathy Pain

With the new orthotic doing well…I guess…I’ve been reading more on bowing of the tibia. I have gotten a few responses from parents around the country reflecting our experience. It seems the course of action we are on is kinda the standard. I did receive one from a mom, Katie, who’s little one is older than Tony:

Yes, the doctors here in Sioux Falls told us that his leg would straighten itself out on its own. What happened was that his foot did come down on its own. It came down a lot from when he was born. At first his foot was pushed all the way up and indented his leg. However the angle of the bow never changed.. My theory is, he used his legs a lot to kick and push plus he had physical therapy once a week so the muscles and tendons strengthened but the bones never moved.

He had a brace on his leg from day three. Imagine walking out of the hospital with a new born that already has a cast. Thank God the people in the Walmart here know me or I’m sure they would have thought I abused him. Every time we went out in public someone stopped us to ask what happened.

At about nine months there was a new specialist in town and he stated that Tanner’s leg would never be straight, and the bracing was a waste of time and money. I of course had a major panic attack (which is what i seem to do best in stressful situations. no one likes a calm mother anyways right?), then went home to do some research of my own.

My father is a Shriner and I knew that they had specialty hospitals for burns and amputees but I was not quite sure if Tanner would be right for them. When you go to a Shrine hospital you need to have a sponsor so that was the first step in getting our now third opinion. My father sponsored us and we were on our way up there a month later.

They took x-rays and looked at it almost as though it was not as big of a deal as what it felt, which was sort of calming. It helped that there were a lot of kids that had disabilities roaming about the hospital and the play area. It was almost like home. We felt as though we belonged the moment we walked in. Tanner played exceptionally well with the other kids and everyone was so accepting.. They sent us on our way with another brace and told us they wanted to wait a year (until he had walked on it for some time) to decide what the next step was.

The next year, we went back and they took more x-rays. This time the look on their faces were not the same. They told us that he was for sure going to need surgery when he is big enough.(Between 6 and 8 years old) Fortunately that is in the beginning of his school career so when he is in high school he can play sports if he wants. I cried at this appt too. Imagine that right? Oh and I forgot to tell you my Doctor has a little bit of a stutter so when I cry she stutters more. Its sort of a funny little mess.

Last year, our concerns were that his leg was starting to be A LOT shorter than his other leg and he was starting to limp harder on it. We thought maybe it would affect his hips and his spine, we were also worried that his leg was getting longer and with the bow the way it was that it might snap in half if he jumps on it wrong. They assured us that he was going to be ok and that was not something we had to worry about just yet. Well we made it through another year without problems.

This year, Tanner grew a lot.

We went up two weeks ago and they took x-rays. Everything seems to be the same except his attitude and how smart he is getting. He knows now that he is different from the other kids at daycare, and that his bones are bent. He also knows that they can be fixed. When we were walking out of our appt this time he saw a child that didn’t have leg and asked me if the doctors were going to have to cut his leg off. That was a long four hour drive with a lot of explaining. When we finally got home he knew every detail of what happened, and on Monday when he got back to daycare he could explain it in his own terms.

While we were up there this time they confiscated his new Jordans to put a lift in. When he wears the lift he stands an inch and a half taller because he isn’t leaning anymore. His hips are even so he doesn’t complain about his back hurting, and today we go up there again to pick up his new brace.

Oh I forgot to tell you the physical therapists theory on going without the brace: He compared Tanner’s leg to a tree root. Once the root hits the side of the house (When Tanner started walking), it was not going to grow anymore straighter than what it is, it will turn and start growing in another direction where it has room to move. Basically, with Tanner putting pressure on his foot everyday without something to hold it straight, it wouldn’t make any improvements but to continue to grow to the side.

http://www.shrinershq.org/

That is the link to the Shriner’s home page if you want another opinion from them. All you need is a sponsor which isn’t that hard if you know a Shriner already, but if you don’t, I do. And they are more than happy to help any child in need. It is free all the way around. If you have to travel they will provide a ride or if you want to drive (which is what we like to do) they reimburse for the gas. If you need to stay in a hotel room they pay for that too. Everything is free. Aside from the food you eat and any shopping you may do on the way..

I’m glad we went ahead and pushed for the brace. He seems to walk a lot better with it on…though it is really loud when he is crawling with it. Clomp!…slide…Clomp! It’s hard to be a stealthy Binja Pirate when that’s happening…