Today was the first ALL day we have had with the new contraptions in our house. Yesterday Tyler was fitted for his orthotics. We have had a heck of a time getting into get his new braces and we have had a heck of a time fitting Tyler with orthotics. I am sad to say he hates them.Our appointment was in Downtown Phoenix. It is weird to think that that was almost my LAST appointment to have to drive to. We got to Brets right on time and we waited pretty much no time at all. I got us set up with his DVD player just in time to get us back to our room. Bret was all ready with Bags and bags of these new and improved kiddie gait AFO/SMO's. I got them out for him to look at hoping to ward off the evil spirits of actually having to put them on. He looked at them joyfully and then put them down on the table and signed "All done."
* Technical/medical mumbo jumbo to follow*
AFO: Ankle Foot orthotic- it goes on the ankle and up the calf to support the leg.
SMO: supramalleolar orthotic- gives the medial and lateral support needed for calcaneal valgus, pronation, and supination with high or low tone. Or basically just encompasses the foot and ankle not the rest of the foot.
Kiddie Gait- Titanium AFO with no SMO. Ty has a separate SMO to wear with his AFO/kiddie gait.
I spent the day telling him about what we were doing. My tummy was in knots because I KNEW this was not going to be the most pleasant thing that he has to endure and that he would cry and be upset. I wasn't disappointed. He was upset. VERY upset.
When Bret comes in Ty starts telling him no. Ty doesn't exactly have a wide variety but No is in the limited one he does have. He waves but is still really really conscious of what is going on. I talk with Bret for a minute and we start the process.
We put on the SMO and the tears start and never stop. For the next hour Ty is subbing, gagging, temper tantruming and barfing. The bad part of him being upset is the muscle tone that he gets. He is TIGHT TIGHT and we can't barely move his feet. The stinker won't stop either.
The end of last school year ( when the ordeal to get these new braces started) I ordered some new balance shoes for him that were extra wide. They are HUGE on his poor little feet. But alas they still weren't wide enough but they were Velcro. We tried and tried but his foot and his contraptions just weren't going to fit.
Bret fitted them, and left to round down the edges and make them fit better and he came back with a pair of orthotic shoes. The new balance shoes were NOT cheap. Like 55 bucks I think. I know.. Who the heck pays that much for shoes for a 3 year old. NOT ME. I was pissed. But even better, guess how much the orthotic shoes are? Yeah... 99 bucks.. NOT KIDDING. For a KID!
Anyway, they are the only thing that is going to fit the braces so what do you do!
We get his shoes on and he is still gagging, and coughing and crying and now throwing a full on temper tantrum. We put him in a walker because these new braces literally cause him to not be able to move on his own so he needs assistance. ( I hate that the things that are suppose to help them hinder at first!) Here he starts throwing himself down on the ground. Hitting his back as he goes because he doesn't want to walk. He is FREAKING out by this point and I can't give in or he wins.
Poor Bret was so upset that he made him cry like that. I told him it wasn't his fault. He "mention" that Ty is so stubborn and so STRONG he felt bad he would only make things worse if he tried to help.
Ty and I walked down the hall to see if his foot placement was ok and he was screaming. Like full on screaming. I let him throw his temper tantrum when all of a sudden the banging started. As in HEAD BANGING against the floor. That made it so both Bret and I lost. The braces were coming off.
Braces came off and red spots were assessed and Ty was a happy camper.
Then came the good part.
Payment!
The braces cost somewhere around 3 grand. And the shoes are another 100 bucks. BUT we have been praying for a way to pay for them above just forking over the money. Bret and Barb have a hacked website so Dallas is going to be developing a website for them. In exchange we get the braces and the shoes for trade!
Today Ty wore his braces for therapy and he did an awesome job. He even got to play Wii Fit and LOVED it. He was happy to have them off though.
Watching him through this last week and going through the struggles of communication we have had tonight I am so glad we didn't rush into more children and not have the time he needs from me and Dallas. He is so sweet. But prematurity SUCKS! I hate it and it causes my sweet boy pain.
Posts to follow regarding our new milestone. It has left us all smiling for 2 days now!
5 comments:
We have had bad times in getting fitted for AFOs as well, but nothing like what you and Tyler had to go through! Wow!
It is always appts like these that put me into feeling really bad for my daughter, myself and my family.
As for the shoes, we have had the same problem. We used to go to all the stores that we could to find shoes to fit the AFOs, but nothing would work, or if it did, it only held up for about a month. The shoes you bought are the same that we have, only we have pink, and I think they hold up much better than anything I have found before. They are expensive, but when I figure in the cost of driving around looking for shoes, not to mention the hassle of it, I have always thought that they are worth it.
How wonderful that you got to make a deal with them in paying for the AFOs. That is an amazing gift and I am so happy for you for that!
Take care,
Debbi
I remember when we had to put Kayden in the stander and he HATED that thing. But a little bit everyday helped him get through it and I am sure that will be the case with Tyler.
At least the shoes are really cute :) Things will get better.
This pair is WAY cuter than the last. And these aren't heavy. As if the kiddos need heavier shoes when they have contraptions on their feet. He actually wore them through therapy. I didn't send him to school with them yet though.
Nancy, I know how you feel. It's hard to deal with the emotions of things that seem to make it worse, before making it better. I know Ty will be better off in the future, but getting to that point is where it just plain sucks. No other way to explain it. I am so excited for you to be able to work out a trade for the braces and shoes. Every little bit helps, huh?
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