Completely Wasted

Last updated on: December 14, 2015 at 4:17 pm by Rebecca Frech

Completely Wasted 2015-12-14T16:17:55-05:00 Rebecca Frech

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We saw the chiropractor today for a “tune-up” for Ella. (If you’ll remember, he was the only medical person who was helpful and took this seriously for the first few months.) Sitting all the time and the crazy things she does at the skate park tend to knock her out of alignment. He twisted and cracked her back into place, and checked out what the latest was with her legs.

He felt her shrunken calves, and looked at her floppy feet. Yes, there is significant atrophy there as we would expect there to be after 18 months of not walking. Then he felt her thighs, just above the knees, and said that while there is still some muscle tone on the right one, the left is completely wasted. “Yeah…it’s gone..” he said.

Gone.

It didn’t sink in then, but it has now.

We’ve spent the year since she was released from physical therapy (for not making any progress) doing all of the exercises we had learned in order to preserve her muscles. “Someday we’ll figure this out,” we said, “and we will have kept them strong enough that she will be able to use them.” Those poor under-and-un-used muscles were our hope for a return to a kind of normal someday.

Gone.

When people ask us if she’ll ever walk again, we usually say ‘No,’ but deep inside we keep hoping that something will happen to change that. We keep hoping and praying for a miracle, and instead her old life continues to slide away from us one piece at a time. She has moved on and is living her life, but she’s eleven. We’re her parents, and we keep hoping and searching for answers.

We know that she caught a cold 20 months ago, and lost the ability to stand, then walk, then move her legs at all. There is no explanation for what happened, and although it all seems consistent with a spinal cord injury (incomplete to L3, L4, L5-S1 for those who know about such things,) we can’t see any sign of injury on MRI (not unheard of for damage to the Cauda Equina part of the spine, but still completely frustrating.) So here we are, with an apparent spinal injury that no one can find, and so no one can treat, watching so much slip away, with nothing we can do to stop it. We don’t even know which questions to ask any longer.

Most of the time we don’t dwell on everything that has changed, but then come the moments, like today, that bring it all swirling back into view for us. On days like today, I pray for comfort, and to be as optimistic about the future as my eleven year old is.

https://www.youtube.com/watch?v=TQdoc4A

 This weekend at the OKC wheelchair basketball tournament where she was the high scoring player

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