AFO's stand for Ankle Foot Orthotic's. You probably have seen them before. They are braces that you see on kiddo's legs and feet. Sometimes they are done in gorgeous flowers etc or a plain color or in Ty's case a Pooh Kicks soccer ball. Sadly, Rocket is still not on things like this because Disney won't release the copy right ( I know huh.. geesh let a kid wear rocket on his feet for Pete's sake.)
(Not Tyler's AFO's pictured)Ty has had AFO's before. Though most have never seen him where them, it is for good reason. Ty has/had a slight problem with keeping his feet in them. As you can in the picture. The heel has a hinge on them designed to make them "easier" To walk in. Well, some how our little Houdini was able to use leverage ( or plain spastic muscles) to pull his foot out of them. They would make him walk even more on his toes than we started. He hated them. They were ugly and frankly, I didn't like them. They didn't help him and they were such a struggle.
Our Orthotist, Bret, has never had a kiddo that was so hard to fit. We tried fixing where his feet go, changing how the foot was positioned, Recasting etc.
Then during the course of the year , Ty had several shunt revisions which also changes the course of action because his muscle tone changes. He became VERY stiff for a while and it was not as tight another time.
Also we tried Botox, which again changes his feet. Another thing that changes his muscle tone is GROWING. And Boy has he grown.This was our LAST casting. You can see all the photos HERE! I am not even sure in all of this new stuff when our last recasting was. But it has been a long haul getting us to this point.
We are now getting SMO's with titanium AFO's. Sounds exciting right.
Well in 110 degree weather we will have to see who is having fun! Oh but his won't be pink.So fast forward to yesterday. Ty is much bigger now than then. Dallas was planning on being there with us but his work had a nice little meeting that made it so we were on our own. He was so sorry he couldn't make it but it looks like we survived.
But Barely....
While casting my big kiddo, he FREAKED. He spit on Brett, kicked him, drooled on him, gagged on him and totally freaked. Yeah and sadly for Tyler that is how is does appointments. He has such a meltdown at any appointments lately that I dread going.
We got him casted and we got all set to leave. ( sorry no pictures of yesterdays casting. I was on my own.) Then comes the good part. These particular braces are not covered by our insurance. Oh wait, yes they are but Bret isn't. And our disability insurance won't pay Bret because he works with Shriner's ( A FREE hospital) Gee how horrible of him. So we get to pay out of pocket. A little under 3 grand. No big deal but could you leave a deposit of 50 PERCENT before you leave.
SURE!
So by the time we get all done we spend 3 hours in Phoenix. Getting something for three thousand dollars that we don't even want and causing Ty so much anxiety that I am a mess.
So goes the day. But frankly, at the end of the day I hate that we have to do this. That sometimes he has to go through things that he doesn't deserve. Its hard. And frankly. I hate it.
Today, was a new day. It was not hard. And we got lots of kisses. And tomorrow.. We will get lots of kisses.
It will be OK.
2 comments:
I am always so inspired when I read your blog, I have a hard time commenting these days, but I am thinking of you and hope that things are going okay with your little guy. It sounds like you go through a lot.
I really enjoy reading your blog, it strengthens me in my trials with Mandy. I guess that’s because it reminds me of when Mandy was younger. The care that was required by all of the physical challenges that she went though deepened my love for her beyond words.
I used to say that I could handle her having Down Syndrome that was easy; it was all the physical challenges that were hard. Now that she’s twenty-eight and the physical care isn’t so great the Down syndrome is more of a challenge. She was born with a clubfoot so for the first year and a half of her life we went though cast changes every couple of weeks so her foot could grow. They made them out of a type of plaster that would soften when soaked in vinegar water. I would soak her cast in vinegar water and then unwrap the cast several hours before each appointment. This would give the skin on her leg and foot a few hours to breath before the next cast was put on. I still have two of her cast. The first one that she came home from the hospital as a newborn in came all the way up her leg to the top of her thy (that one they cut off with a saw, scary), and one from 22 mo. later that only came up to her knee when she became a bit of a Houdini and managed to kick out of it. Interesting, they are about the same size. (I’ll try to figure out a way to show you some pictures.) Thank you for reminding me how much I love her. If you ever need a shoulder to cry on or a listening ear please feel free to give me a call. Love, Tamara
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