Three Little Engines: Do I dare?

Monday, February 14, 2011

Do I dare?

Do I dare say it?

Jace has been totally overnight accident free for 5 days in a row now!!!

He's having some daytime "accidents"... more like daytime messes made because he doesn't want to leave his activity to use the toilet. All involving poop. Yay.

But if I look back at where we started, it's really quite remarkable he's where he is at right now.

I got some supercute pics from my friend Susie, and wanted to share a couple.
I won't share any with her children in them until I've okay'd it with her, so for now, it's just my 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.