Three Little Engines: Not fair

Monday, November 16, 2009

Not fair

Aidan came down with that stupid cold again!

(The shiny stuff isn't runny nose, but salve.)

Damon has the same top half of face as Aidan, and the bottom half matches Jacen. :)

Ahhhhh, relief from the misery. Several doses of gas medicine later, Damon is much more himself. I'd messed up and not given it to him for several feedings on Saturday. Oh, did he ever pay for it. :( Sorry little man.

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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.