Three Little Engines: Homemade decorations part I

Thursday, December 11, 2008

Homemade decorations part I

I saw this project on http://crockpot365.blogspot.com/ and thought it would be perfect for me and Aidan. It's super cheap, easy, and fun. Aidan had as much fun as I did.

Jace snuck away to eat the dough.
(And a tornado also named Jacen hit the family room.)

Ours are currently baking in the crockpot and roaster. I made the dough with regular flour and it wasn't sticky at all. I'll post the painting, stringing, and end result. Even if they don't turn out, it's worth the fun we've had so far!

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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.