Three Little Engines: Making usual messes

Tuesday, January 27, 2009

Making usual messes

My grain mill came today! I ordered two cookbooks, No More Bricks and Country Beans, as well. I'm excited to implement this into my freezer meals. I also plan to make my own crackers and granola. :) Since I've already got my month+ worth of meals in the freezer, I'll start with the crackers and granola. But, I've got to purchase the grain and beans first!

The boys were thrilled, as they always are when a package comes. Especially a package with styrofoam peanuts.

I will have to vacuum them, not just the floor!

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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.