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.
8 comments:
Nancy, Okay so I am really embarassed lol. I was trying to comment back to you (i think) and I commented to your aunt. So I am sure she will read it and think I am a total dork! Anyways, thanks for visiting our blog! Clark knew right away that it was you lol, I told him someone rote us a comment about you and he read it and was like oh yep that must be Tammys sister Nicky lol!
I had a really good thing to say and then I read Schaly's comment and I forgot I will have to go back and re-read your thing and comment a little later.
Here's a {hug} for you and Tyler.
I know this topic well. My son, Wil, lives with spastic quadriplegia. He is 10-1/2 and has lived his life in braces (various AFOs) and has had 3 lower body surgeries each requiring weeks confined to bed, months confined to wheelchair and extensive rehab. Physical therapy is life-long.
Due to growth he is expected to require at least one more surgery.
Lots of hard times, heart aches and pain, but Wil says it is all worth it. He was never expected to walk, talk or have measurable intelligence. The experts are there to help our children and us...and my child would never be where he is without them.
However, there is a higher expert. :)
Email me anytime you need to chat or ask questions.
Nancy no matter what problems Ty has he will always be loved by ME! :) so that should always make him feel better. :) I know it doesn't take away the pain but just know that I hear/notice things too that people say/do and it hurts me too. So whenever my sisters hurt I hurt too
Yes, Tyler is loved by so many people. We would like to take the pain and hurt away for him, but somewhere along the way he, or we, or someone decided that it was all necessary for some unknown at this time reason. We never know what our test is but we do what we need to do to "pass the test."
Now, for something else. Someone had better let Shayle know that she isn't a dork, that Nicky and Nancy are "almost" the same thing, and that you are both sisters to Tammy.
Beautifully said Nancy. I wish we were closer so our boys could grow up together.
All my best, Michelle Hanna
Tyler looks like he is a real trooper and you are such an amazing mom. After becoming a parent, I have been trying to be more careful what I say to people. I have found that people can say things offensive to me and have no clue. They will say something like, "Oh your baby is so big" or something like that and I have felt bad about a few comments. That probably wasn't the best example, but I couldn't think of a good one off hand. I also have to bring Alli to physical therapy because she has the flat baby head thing and people would comment about it. I realized that as a parent, I was super sensitive to the comments of others and I think that I always will be. I really like how you gave the advice about being understanding and listening to people in your ward. You really never know who may be struggling in their life and who might just need a friend. Your blog always inspires me when I read it.
My son is 3 and has CP and just got these braces 2 months ago. He is doing really well in them. They do now make a pediatric version and ours were covered 100%. You might want to check into that again so you don't have to shell out the cash.
Your son is adorable and he looks like a real determined kid.
Good luck!
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