Lilah's MRI was "normal". For a spit second we smiled because we are not too accustomed that word....and then we realized that her orthopedic surgeon was looking for an explanation for her scholeosis...an abnormality of her spinal cord that could have been causing the curve...something that could be fixed. But no. Her curve is the result of weak muscles and neurological impairment--the most severe and the hardest to treat....and progressing at a nauseating rate. In February her thoracic curvature measured 43 degrees (there are 2 smaller curves that the body has created for balance), last month it was 56. The bigger she gets, the more mobile she becomes...the more gravity pulls at her spine--a very cruel irony.
As I'd mentioned before, all treatment options are bad in Lilah's case. A brace is ineffective against this type of scholeosis, she is not strong enough to support a cast, and the surgery is brutal, even for healthy teenagers.
And so, we do nothing. Her team decided that she was not a good candidate for any intervention given that severe complications were likely. Sadly, we learned early that there is no 'fixing' what's broken with this precious child's body....but we can make decisions that give her the best possible life. We've been given a great peace about 'letting her be', as both Paul and I had extreme anxiety over subjecting her to any of the treatments. Even though her scholeosis is no better, it feels as if we have been relieved of the burden in some ways. Choosing not to treat takes it off the table...one less thing to worry about ....many fewer doctors appointments to attend. And goodness knows, that's a blessing.
|Lilah and her Uncle Jeff|
So the best choice is to wait and watch and let this disease follow it's course...trusting that any other decision would rob Lilah of a quality of life that we work very hard to maintain. I am thankful today we have choices in her care and such an incredible support system to help us make decisions that no one should have to make.