Three Little Engines: Dream night 2012

Friday, June 1, 2012

Dream night 2012

As Aidan was going in. He was thrilled.

Less than 30 mins into it he wanted to leave. It was too much and too hot. Even with the mister and the fan and a drink and the canopy and the earmuffs. But he stayed for his brothers... not sure if it was the right choice on our part or not. He's miserable tonight, and my heart is aching. For his discomfort, for his pain and seizures, for his feeling left out and unable to just do regular kid activities. I HATE this part!! LGS is awful!

At the end Jace and Damon were still basically okay. Jace had some meltdowns, so I knew he wasn't really okay, but he still certainly wasn't struggling as much as Aidan.

Very grateful to them for providing such a night.

1 comment:

janna said...: To bad we didn't see each other!
LGS is awful, I agree.; June 2, 2012 at 10:51 PM

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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.