One in a Million

We made the trek up to Riley to see another pediatric orthopaedic surgeon this morning. Two children somehow managed to get in the car without their shoes and so we had to walk the "10 miles uphill both ways in the snow" from the parking garage to the hospital with our almost 6 year old in the flimsy stroller and the boys balancing precariously on our arms and shoulders – also holding the packed to the hilt backpack with toys, snacks and emergency clothing for at least a week. (Mr. Man thinks I’m insane, but if I hadn’t brought it all, we would have needed it!) Our visit didn’t take too long and we made it home in time for lunch, Big J to have a run in with the wall (almost resulting in a trip to the ER), kindergarten drop off and then speech and physical therapy appointments. I’m exhausted. So are my kids. We’re a rather grouchy group right now.

Mr. T got a new brace for his right foot. One specialist recommends it, another says no brace will help and we shouldn’t limit his motion in any way. One specialist says to wait for surgery until he is in excruciating pain daily, another recommends January (since it’s no fun to be in a cast for the holidays). Basically Mr. T’s extra bone and floating cartilage are in a nasty spot – right in the middle of his ankle nice and close to his growth plate. Removing it is nearly impossible. Plus it most likely will grow back continually. De-bulking it is another option, since the extra bone is growing so large his foot is collapsing and he can hardly walk on it. But the surgery also poses risks. Immediate arthritis, possible need for an ankle fusion and every specialists’ announcement that this is “unchartered water” - his condition affects one in a million. They don’t know. They want us to decide. The surgery could either make his pain better, remain the same, or much worse.

I want my little boy to be able to walk to and from the mailbox. I want him to be able to have a chance when he races with his little brother. I would love for him to be able to play any sport he wishes to try out for... and I wish both his legs were the same length so he wouldn’t trip and fall so much. I don’t want him to have to limit himself because it hurts or he’s scared of potential pain. I hate that he feels different and tells stories where he uses his magic to “make my ankle disappear”. Yes I know things could be much worse. Sometimes I forget he has a problem at all, but on days like today, my heart aches as we try to make the best decision for our little boy who still has so much ahead of him. Long-suffering is a good word to describe my sweet boy, and I hope and pray we are guided in making the right choices for him.