It was not in myself, no…I am so far from that, my friends. But I would venture a guess that you can guess on whose face I saw the brave look of infinitesimal courage.
Esty. You are so right.
This week, she had to have her TSLO fitted. For those of you who are clueless as I was, that's slang for a Thorasic/Lumbar/Sacral Orthotic. In short, it's a suffocatingly tight piece of plastic that clamshells our girl in an effort to hold her present spinal curve so it doesn't increase.
We had the mold made a good 7 weeks ago. Don't get me started on why we're waiting so long. Sometimes, you pick your battles not only with your teenager, but your medical community!
When we went back this past week, I had attempted to prepare her for what was coming. HOW do you prepare a child who barely understands our culture that we are now subjecting her to painful, hot, plastic torture and she has to stay in this device for TWENTY HOURS a day for the next 3-5 years!?!!?
Well, you simply cannot.
So we mentioned it in some happier terms…like the butterfly pattern she chose for it. "Won't that be fun to see how it looks?" I cringe as I try to make SOMETHING fun in all of this.
Thank God for iPads. At least she can play on that while we wait.
The orthotist brings this MASSIVE thing in and has her put on a stocking that covers her from neck to knees. Then he has her lie back and does measurements on her and then makes markings on the brace. He disappears. We hear sawing.
The next time he appears, it's considerably shorter. (So thankful!) He pries it open and it swallows her whole.
He does some looking and removes it and calls in his colleague. He shows him her curve. They exchange "mmmhmmms" and I hear, "yes, that is quite unusual."
I don't ask.
He turns to me and explains, "I need to cut this appointment short. I want to send you over for an immediate Xray in the brace to see if it's holding her in the appropriate places. We cannot afford to make any mistakes."
Baby girl needed to cath, but instead, we ran across the city to her hospital where we raced against the clock to be able to return in the orthotist's time window to have him complete the fitting.
This brace getting clamped onto her torso and running out the door and into the car and over to the hospital…it would all feel so…scary! It was supposed to be a 2 hour appointment and then we would go to the horse barn to get Jensi. (Esty takes comfort in knowing how the day will run.) Instead, after only 30-45 minutes, we were leaving and it was under a sense of duress.
She never complained. She never cried. No tears even welled up, well, except in MY eyes.
When I asked her in the van how she was doing, she replied, "I'm fine, but this thing…it's not too comfortable."
That's courage, my friends.
We get all the paperwork done and learn she has to stand with her chest pressing hard against the glass of the X ray. She cannot stand there alone, this brace throws her completely off and walking with her walker was a tremendous difficulty. (I saw her eyes flicker a bit when she realized how this may be changing things, and the lump in my throat was the size of the Goodyear blimp.)
We ended up leaving the brace and after the orthotist had a look at the X-rays, he informed me he must trash this one and make a new one. I appreciate his attention to detail, but am so heavy hearted that our girl will now get her TLSO the day before we go on vacation.
I praise God that she can have FOUR hours out of it daily. You can bet that those hours we will use wisely! We will swim, play at the ocean and snuggle in fresh pajamas after a bath.
I don't know why this particular medical thing bothered me so much other than it's going to have SUCH an impact on her daily comfort level. And she cannot even understand why. (I have shown her a straight spine and the X-ray above, but how much that makes sense to her, I do not know.)
When I picked her up to get her in the van (regular things she has been doing suddenly became stiff and impossible) I couldn't get over the sense that we had gotten her out of the orphanage only to encase her in plastic body cage (feet and ankles in similar braces) in a foreign land…and force feed her cheese. (okay not really, but the girl hates her cheese and she's TRYING to live in America!!!) I got her into her seat and ran around to the driver's side trying to pull my emotions back into my lap.
I didn't feel this way about her AFO's. (Ankle/foot orthotics) They helped stabilize her feet so she can walk! This...this feels like nasty punishment.
And the kicker? Because she is tethered (meaning her spinal cord is caught in scar tissue) the brace may not even help hold the curve at the present degree. All this, and it very well could get WORSE and still require the surgery we are trying so hard to avoid or at least postpone. We won't know.
Here is my brave girl sitting in the Xray waiting room after failed attempts at cathing due to the monstrous TLSO and giggling because she had decorated this fairy and taken a picture of her walker and now "the fairy, she is walking!!" Giggle giggle giggle.
What?!?! I'm about to melt into piles of tears for my girl and she is enamored with the camera feature on the iPad.
Some may call it immaturity, but I call her brave.