We finally made it to the orthotist today. We had to reschedule because of our sad run in with Mister Crabby and Sick pants. They gave us a good hour because Ty is their "Houdini". He is the ONLY patient of our wonderful orthotist, Brett, to be able to pull out.
We got their and we looked at all the options for Ty's feet. He has grown SOOOO much. He is now almost grown out of his 2nd pair of braces in less than a year. Brett thinks he has grown in the last few months. Because of his growing he is noticing where his spasticity is. He is NOT a tight child but the spastic part of his leg is making it so that it is misfiring and making it so that he is pushing his arches down. He is having a hard time getting his walking down. He doesn't use his tippy toes like he use to. That is REALLY good. So now we are facing a much larger challenge.
We took off the top part of his braces and he is only going to use the bottom shoe part. He needs a graphite brace ( the picture is what they look like, and they don't usually have little little kids like Ty wear them) but no insurance covers it and it is a few thousand dollars. So we have to go see another kind of Doctor. This doc is book out till Feb. of 2009!! He needs the braces before then and this doctor is the only one that does Botox. So we are looking at doing all we can to get him in sooner.
We go back to Shriners in November and see what they orthopedic doctors say about his growing muscles and his legs as they get bigger. Unfortunately we are on a path that we thought we would "outgrow." They are still projecting walking independently and without his walker around 4.
I am so proud of Tyler. This can't be an easy thing for him. It also makes me more aware of the things that are said by others. Especially ones that are innocently said. It is a hard path that we were shoved down and we are entering a new territory that I have never been on and I am at a loss as to where to go from here. I am more aware of the limitations that we will be facing. It is a very new and real thing for us. For me. Something I will have to learn to do.
My education had paved me a way to help Tyler. But it seemed to have ended around three. I don't know how to help my baby. I have no way to shelter him any longer. He has to face the world.
So, ( I made it all night without crying and being sad) we are on the journey that we don't know where it will take us. I can't bubble wrap the world. But I am trying to share our knowledge with others.
Please be kind. Think before you say things, stare or make jokes. Ask questions if you don't understand. Ask what the parents need in your ward, church or work place. Most of the time they need a friend. They need someone to share their sad times with. And most important, to share the good times with.