Three Little Engines: Gingerbread house

Saturday, December 20, 2008

Gingerbread house

Here's Aidan's gingerbread house. We ran out of icing, as usual. But I have to say, for a gingerbread house kit, this was truly preschool easy! I might try homemade gingerbread next year... not sure. Aidan saw the package several weeks ago when I purchased it. He immediately wanted to build it, remembering last year. It's fun, and since he's more of a chocolate lover (smart boy) he doesn't eat all the trimmings. :)

Next year I will have to make extra icing, regardless.

While Aidan and I did this, Jacen was playing cars with Daddy.

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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.