Three Little Engines: Jace and Damon's birthdays

Friday, November 21, 2014

Jace and Damon's birthdays

Jace's 7th birthday was completely overshadowed by what was going on with Aidan.

He didn't get a cake, we just took Aidan't Herbie cake out of the freezer from his birthday that he spent in the PICU, and had that. Jace was okay with it. Our neighbor was going to make one, but her grandmother died and she needed to travel for her funeral.

The fart gun aka "poofer gun" was the clear winner.

Damon's was after Aidan's passing, so I was at least able to make him the yellow cupcakes he asked for.

First time back to Big Juds, without Aidan.
It was so hard not to just break down. But like that's fair to his brothers, so I sucked it in, and put on a smile for my Bebe.

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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.