Three Little Engines: Homemade playdough

Thursday, June 16, 2011

Homemade playdough

After the DDA BBQ today, we played with the homemade playdough that I made about a week ago. I love this stuff. It's seriously the perfect playdough. It doesn't stink, we control the colors, and it's so smooth and fun to squish around. The boys made dinos, letters, numbers, and butterflies.

Of course Damon ate some while I was distracted. Fortunately he stopped after the first bite. :)

We've started doing DT partially at home now. It's been an adjustment that Aidan needed for a while so the transition wasn't as hard for him as Jace. We will be working out some kinks for a bit, but I'm actually really happy with it, first stress filled day and all.

I had the boys make their "home DT" schedules, to keep it separate, yet still the same, as at the center.

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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.