Three Little Engines: Sweet boys

Tuesday, April 7, 2009

Sweet boys

So far the worst side effect that has shown up with the Trileptal is this. Poor boy is tired more often. It's only the "working up" dose, so he'll be at double or more later to decrease the seizures. I'm hoping the higher dose doesn't make him too pooped to function. But I suspect this is more of normal tired. Aidan has always slept little and had more than enough energy. Still haven't managed to get the other medicine down him. I'm choosing not to lose sleep over it.

Jace is thrilled with himself because he has Aidan's recorder and figured out how to get it to whistle. Slobber, slobber. :) He climbed up the TV stand to get it. SpideeJace. He can't run, but he sure can climb!!!
My sweet, perfect boys.

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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.