Saturday, November 22, 2014

She's Bent, Not Broken

About a year ago, at a regular yearly check-up, Bai was given the test for scoliosis. We have all had this simple test; I remember having mine done at school, where I had to put my feet together, bend over at the waist and let my arms dangle. In fact, when I was tested, I actually did have a slight curve in my spine.

But, I digress...

So, as Bailey bent over, my eyes met with the doctor's, over her very uneven back. We had a silent conversation about what we were seeing and the exam continued. We were then referred to Primary Children's Hospital for an x-ray and at that time she was shown to have a nineteen degree curve. Additionally, one leg was slightly shorter than the other. No worries, we would just watch and wait.

Six months later we went in for another follow up. She was now measuring at twenty-four degrees and evidence showed that she was still growing. She denied having any pain, so we opted to wait another six months and re-evaluate.

Those six months passed without a problem. She grew and she ran a half marathon and she never complained of any pain or issues. However, her x-ray at this time measured her with a twenty-nine degree curvature...and she is still growing.

We knew all along that a back brace was a possibility if her curvature reached a degree that indicated a need. I honestly never thought we would get there.

I was wrong.

As you can see, she curves in two places, which is also tipping her pelvis and causing her neck to be twisted. The vertical red line indicates where her spine should be and the horizontal red line shows how her pelvis is uneven. Our goal at this point? Stop the curve from growing further, correct what we can and avoid surgery.
Now that we know the curve is there and have seen the x-ray, see how obvious it is, just looking at her? Running my fingers down either side of her spine, I can feel every curve.
About a month ago, Bai was fitted for the back brace that she will be wearing for at least the next year. When her time wearing it will be completed, is anyone's guess. She will be followed by Primary Children's and the company that fitted her with the brace, while we watch to see what her back will do. Eighteen hours a day, in a hard, plastic shell, is not how a thirteen year old wants to live...but she is a ROCKSTAR and has adapted to it relatively easily. She also has a small wedge in her shoe that helps with her shorter leg and tips her pelvis back into the alignment it should be in.

She was showing Bai her curve and explaining how it was making her stand. The white "body sock" you see on Bai is what she wears under the brace. It is the only thing that can be between the brace and her skin.

It has to be put on while she is laying down. Her body is most in line when she is horizontal, rather than vertical, when she naturally tips.

Teaching Bai where the padding in the brace will go and how it helps align her properly, based on where her curves are.

Teaching me how it should fit and where it should be on her body. Those straps you see are heavy duty Velcro.
When she wears tighter shirts, you can see the obvious curve to her right hip. However, we have found that in most of her clothing, including her school uniforms,  you can barely tell.
 She still has some moments when it sucks and it is hard. It is not comfortable and it can be difficult for her to move in certain ways. She has times that it makes her nauseated and a little claustrophobic, causing her a bit of anxiety. We choose to work through it or take it off for a bit. All she needs sometimes is a few minutes out of it, to stop the panic.

She is amazing. She laughs and jokes her way through even the hard stuff. Talking about it on the way home that day she says, "Wow. I'm probably going to go into high school with no brace on my back and no braces on my teeth. I am going to be looking Uh-MAZ-ing!"

Sure, kid. But you know what? You already do.

And you already are.

Some people never meet their hero.
I'm raising mine.

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