The time finally came to go pick up Kadence's new brace and she was very excited! David and I were not as excited since we are moving tomorrow and have a lot left to do. Considering the only room completely packed before leaving for the appointment was Kadence's made me beyond anxious. We couldn't wait until next week for the appointment though because she was molded 5 weeks ago and grew out of her current brace about 2 months ago. We planned to be gone until about 4 or 5 since these appointments take a long time. Because of this and the fact I wanted my kitchen packed we asked an amazing friend to bring us dinner. I am so blessed because I had dinner from another great friend last night to help out too. Then I had gift cards left on my kitchen table from another friend so we could get meals as we needed. I have some pretty great friends!
So, we got to Shriners at about 9:45 and started our "routine." We got to see her brace she picked out and she absolutely LOVES it which is fantastic news. They ran out of pink straps but instead of just putting something on they came and asked what she wanted instead. She chose blue and told me she "really wanted blue, she just forgot so she said pink." (Shes just always positive!) We waited while the orthotics guy, Rich, cut and tried it on....cut and tried it on.....cut and added straps...adjusted and added pads. He then cut the middle out which is new, but somewhat familiar since thats what they did in the casts. Kadence loves that it is a peanut shape.
After orthotics was done with round one, we went to wait for xrays. (Random Fact: David and I calculated it the other day and Kadence has had well over 200 xrays in her almost 7 years of life.) When it was her turn I asked the usual question, "Who do you want with you? Mom, Dad or do you want to go yourself?" She again picked to go by herself and just went right in chatting with the xray lady like she was her best friend. They shut the door and did their thing. The xray lady taught Kadence how to make herself look like a mosquito by pulling her eyes down and putting her finger between her two fingers. (Does that even make sense?!) Anyways, I can't believe that at 6 she would rather just get her xrays like a big girl. After xray we went and waited for the clinic. Kadence is actually gaining weight which is awesome! When the dr came in we talked about her shoulder rotation. Her spine has two curves in it, one in the base which they have almost completely corrected and one in her mid to upper. Then her whole torso is rotating to the right. Now we have noticed that her left shoulder is rotating forward as well. (Almost like its hunching for lack of better way to describe it) The dr said that when we fuse her spine he will be able to correct that a little but it will most likely get a lot worse before that point and he can't fix it completely. He then said that her spine is just really bad and unusual. Its hard to come up with a game plan because it just does its own thing and isn't the normal by any means. We then talked about Kadence's pressure sore. As it is right now, she goes about 12 hours, 3 days a week without her brace because of the way her skin breaks down. They tried putting pressure on a different spot in her ribs since it was wearing down her rib and causing the constant sore. Well, now we can see that it will soon be one giant sore. They only have so much wiggle room on where they can apply pressure which causes a problem. Bracing and casting both have to push on the ribs. If her skin is broken down like it is then we will no longer be able to brace. This brings me to the bad part of my day.....the dr said we will have to start thinking about growing rods. I explained that I didn't like the idea because we have heard and read about some terrible stories. (Spinal cords being severed, paralysis, rib deterioration, etc and these aren't rare cases.) His reply? "There comes a point where we just don't have any other choice." I wanted to scream or cry but that wouldn't solve anything. Not to mention it would send the girls into a panic. I have been able to keep myself fairly composed and numb to it so far and I'm hoping we don't have to do it. We will spend 5 months in this current brace and see how it goes. Then we'll re brace and talk about it some more. We will probably see how the next brace goes and then start to make a decision. With growing rods besides having many man complications that aren't uncommon, you also have to have surgery every 6 months until you can get permanent rods put in at about 13.
We didn't have the best appointment, but the girls were great! We went and ate at Crown Burger and just enjoyed each others company. I love my girls and David more than anything! On the way home my devastation was instantly cured when Kadence heard two songs in a row that she liked on the radio. She said in the happiest little Kadence voice, "Man its a good day! I got to hear two good songs!" I need to continue to let her happy, positive attitude spread to me. I know that no matter what she has to go through we will make it work. It might be difficult or tricky at times but we always make it work and we feel so incredibly blessed to have such an amazing hospital that takes such great care of us. They listen to our worries and concerns and help us make the best decision for Kadence. Now I need to go get to packing!
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