Three Little Engines: Pal and Rusty

Saturday, November 26, 2011

Pal and Rusty

Aidan's turn riding Pal.

Doing his separately after all the chaos is over.

Aidan is nervous around any animals. His seizures have increased again- I can only assume because of the holiday. He's also had some issues with sleep because of others waking him, contributing to the problem. This morning his Myoclonics were clustering really bad, so he crashed with a nap by 9am. His Absences have been clustering for days. His trembling hands and arms are at an all time high today too.

I hope he's able to let go and enjoy the relaxing effect a sweet horse can have.

And here's Rusty, the bolonoodle. :)
I think he's already warming up to him.

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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.