Three Little Engines: Close up of his Medical ID aka pocket watch

Saturday, January 30, 2010

Close up of his Medical ID aka pocket watch

The important info is on the underside of the alert, so room has to be left to tip it over a bit to read. (This is normal, and is how wristbands are done.) I'm going to get something from the jewelry making section to attach the watch directly to the bottom half circle.

He's much happier with this. It doesn't touch his skin, isn't scratchy, and has a watch like he's wanted, but never wanted to wear on his wrist. Now I just pray it is noticed if ever needed... better yet, that it won't be needed at all.

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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.