Holy crap. We went to the childrens hospital on Tuesday to get Connor's new braces. He already has AFO's (plastic braces that go from the tips of  his toes to just under the knee-they're very common and you see them on lots of kids with CP). He's been wearing them for quite a long time and they're just part of Connor and it's no big deal and it doesn't bother him or us. When the orthopedist and the CP specialist decided together in a joint appointment that he should have a more restrictive brace (a Blounts brace) we weren't overly upset. Sure, it bothered me a little and I worried a bit about his mobility, but I was resigned to it and had kind of had an inkling going into the appointment that his current braces weren't cutting it.

 (For those not familiar with Connor: He has mild CP. When he started walking he was scissoring his legs a lot and so he started walking on the outside part of his foot to try to self-correct. Consequently, his right foot turns in so that his toes of his right foot are pointed straight at the ankle of his left foot. His legs are extremely bowed. On Xray there is a very visible curve to the lower legs and the angle of his hip to knee ratio or whatever is off. The specialist can't decide if the bowleggedness is from the way he learned to walk or if it is something called Blounts Disease. They said that at his age diagnosing Blounts off of an Xray is very difficult to do. Either way, the treatment for the leg situation is a Blounts brace.)

I googled Blounts brace to try and get a peek at them, but there were no images available.

Now I know why.

When the orthotic specialist walked into the room with his new braces my jaw dropped. They're freaking huge. They have a metal bar down the sides. They probably weigh 5 pounds, which is a lot when you only weigh less than 24 pounds yourself. They are huge and padded and they have 5 straps on each leg. They go all the way up his legs to the diaper line. We're supposed to lock the metal bar at night and as often as possible during the day, which will prevent him from bending his knee at all. WTH? I don't think I could walk like that, never mind a baby with muscle tone issues. We put them on him, which he let us, and tried to stand him up. He couldn't even stand up in them. Walking was totally out of the question. After a minute his bottom lip came out, he whimpered, and he reached over and handed me his AFO and pointed at his foot.

I wanted to cry for him.

I know that he needs these braces. I know that it is better for him to wear them now while his bones are soft and more moldable rather than later when his bones are hard. Cognitvely I understand the need for them, but it is almost impossible for me to emotionally justify it. He will be two years old in two months and we are taking away his mobility. The most important thing developmentally at his age is exploring his world and gaining independence. We are taking that away from him. I know why and I know it is for his own good, but HE doesn't know that. All he will know is that I am putting these HUGE uncomfortable things on his legs and making him wear them and refusing to take them off no matter how much he cries. All he will know is that he can no longer do the things he could do.

People keep telling me that he won't remember this when he's older. That doesn't actually make me feel any better because while that may be true, he still has to go through it now. Blaaaaaah. He has to wear the damn things at night, too. This baby likes to curl up in his sleep. He sleeps in bed with DH and I, and his typical body position is with his head on my shoulder and his legs all curled up. We have to lock the stupid metal bar so he can't bend his legs and make him sleep like that. Guess who's probably going to get kicked all night long with those things?

They barely fit under the baggy shorts we had put on him for the appointment. I don't see how he's going to be able to wear a lot of his jeans and things like that because they're not going to fit.

We ended up having to leave the braces at the hospital so they could make a few adjustments. As soon as we get them back, I will post a picture so you can see how ridiculous these things are. Also, I'm going to get a blog or something so that if someone googles Blounts brace they can see what they look like in advance and be prepared.

I know that there are far worse things in the world. I know that he could have it much worse. Some of the possible diagnosies  they gave us when he was born predicted that he may not even be alive at this age. But still......it just seems like he has had a lot more than his fair share and taking away something like his mobility  just seems cruel. Sigh.

There's going to be a lot of tears at my house in the next few weeks. His and mine.