Monday, July 11, 2016

A Story About a Spine, Part 1

For years now we have been monitoring Elisabeth's spine as it 'fell over' due to neuromuscular scoliosis.

Neuromuscular scoliosis: 
 An irregular spinal curvature caused by disorders of the brain, spinal cord, and muscular system. Nerves and muscles are unable to maintain appropriate balance / alignment of the spine and trunk.

I was told that eventually we would need to fuse it, but it was important to wait as long as possible so that the internal organs could grow...because once her spine was fused there would be no room for expansion.

This year was that year. 

I took Elisabeth to the neurosurgeon in Spokane and an x-ray showed her spine at a 95 degree curve.

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[Front view of Elisabeth's spine at a 95 degree curve.]

 At age eight and a half we had waited as long as we could. Not only was the spine beginning to crush her lungs, but it was beginning to stiffen as well. Waiting even another year would mean the spine would be too stiff to correct.

"Now's the time to decide if you want to move forward with the surgery." 

Was there even an option? If we didn't opt for the fusion she would eventually lose lung function and die.

"Some families see it as a time to let go," I was told.

No, no, no. Not this family. 

Surgery was scheduled for June 28th.

 photo IMG_20160623_133353_zps7fd2qnqy.jpg

Up next: Part 2, Surgery Day

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