Three Little Engines: Mr pushy

Wednesday, June 20, 2012

Mr pushy

I was trying to get a photo of Aidan. Damon wouldn't let me, just kept putting that sweet face in the way.

Jace, while at his dda. :) Silly boy!

Jace's dentist check up is over. His teeth are doing great.

Aidan is almost done with his neuro-psych eval. Just one more short appt. Then have to wait for the report.

Busy trying to get all the reports and such the geneticist asked for. Also getting ready for Jace's disability redesign evals. -Budget cuts-

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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.