This is how I find my Freckle Face every morning. Toby is usually nearly lying on top of him. Freckle Face loves it. Toby hangs with him because he is the only one that will leave his bedroom door open because, as you can see, Toby is something of a bed hog. The look on Toby’s face right now is “Oh good, you are up. Let’s get the rest of them up. I am lonely. You people sleep too long.”
You know how I blogged not too long ago about Freckle Face’s victory? It was a myth. The short-term victory is now a thing of the past, and we are back in the midst of the battle. I am not quite as upset as I was last week, but I am tired of toe walking. I am also tired of talking about it, but I am going to talk about it anyway. Mostly to vent.
Freckle went to see Dr. C. Remember him? The physiatrist. Anyway, they called me about a month ago because Dr. C wanted to follow-up. That is great, right? A doctor that is on top of things. I like it. Unfortunately, he didn’t have a glowing report. He was pretty disappointed with Freckle’s range. It was written all over his face. He is a nice doctor and doesn’t lecture, but husband I got the message that we need to be stretching much more than we are. If we stay on the current path we could be revisiting AFO’s. We want to avoid surgery. The mere fact that surgery was mentioned put the fear in me all right. So, no more walking papers. We will still be visiting the therapist once a week. I still have to think about toe walking all the time.
Here is the thing. I am tired of being told a different story every time I turn around. 5 years ago we started this. I remember very clearly Dr. C telling me that in two years this would be a memory. We would stretch out those heel cords and we would be on our way. That didn’t happen. Fine. I can deal. Casting. Orthotics. This is going to work. Stretch at home. You won’t have to worry about this much longer. We tried. Wedges. Games. Stairs. It didn’t work. He needs surgery, but this will solve the problem. Don’t worry, they said. He won’t even be ABLE to get on his toes. It will be just fine. 6 months recovery? Fine. If it means it will be better. We can deal.
We are 5 months post surgery. Almost 6. Here we are. He is growing. That is what we are fighting now they say. Keep stretching. We aren’t really sure when we can release him from therapy. In fact, he still needs to wear night boots. Maybe even his AFO’s again. Are you kidding me? The ones he wore 5 years ago? Because you know, we could have just done the surgery then. I almost wonder if we shouldn’t have. But anyway, I am tired of it. There is nothing neurologically wrong with Freckle Face, they say. He just toe walks. I love that, but why isn’t all of this making him better? It makes other kids better. I just want him to be better.
Ok, I am done venting now. Freckle Face is going to be 10 in a few days. Double digits! I am so proud of him. He makes us all laugh and gives the best hugs. Happy Birthday, Freckle Face!