Three Little Engines: Preparing for winter

Wednesday, November 4, 2009

Preparing for winter

With all the daily trips to therapy, I take the boys out multiple times a day. This makes for some mighty chilly comings and goings in the months to come. January and February being the worst. Aidan tied this darling duck blanket for Damon, but it doesn't stay put in the wind. I normally use a convertible car seat too... I like to hold my babies in carriers on me in the store. But I'm hardly going to the store anymore. I realized with the major change in necessities for the boys, I was going to need to make some transportation changes for Damon. So he now has an infant car seat so I can get him all cozy before even opening the door. And a cover, with blankets underneath. Think he'll be warm enough in frigid ID?

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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.