Three Little Engines: Earmuffs

Saturday, May 19, 2012

Earmuffs

These great little earmuffs finally came!!

Damon is wearing the very thing that is meant to help Aidan through HIS screaming.

We've had countless experiences of Aidan completely freaking out (like darting out in front of cars or hurting himself or even Damon) when Damon is screaming. It's just too much for his head to take most of the time. I've even been seriously tempted to use earplugs myself. ;)

So we now have a pair for the house and a pair for the car.

Aidan said, "I can't hear anything!!" Great, they work! lol

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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.