Three Little Engines: Tummy time

Thursday, January 28, 2010

Tummy time

I'm sorry this is such a pathetic video, Grandma Weber! I was hoping for what usually happens when I get the plane out. Normally, Jace will spin Damon around and they both have a good time. But since I got the camera out, Jace was consumed with it, so poor Damon had no fun. His being hungry early wasn't helping either.

And boy, do I have a drooler on my hands. I don't remember my other dudes drooling so much so soon.

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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.