Three Little Engines: Jace's soft leg brace

Sunday, March 14, 2010

Jace's soft leg brace

This is legitimate. It's tights, yes, but they are wrapped really tight, pulling his feet out, and putting pressure in all the right places, even making tippy toeing difficult. And can be worn under his pants.

The feet part of the tights, after wrapped around his legs to pull his feet out, are tied behind his back. So now I officially have Jace in tights. Pretty cute legs, huh?

Double trouble.

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Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.