Three Little Engines: Balloons for my boy

Thursday, February 11, 2010

Balloons for my boy

Okay, the paint was clearly marked RED. Hmmm. Looks awfully pink to me!

True to February weather in ID... bitter cold and windy.

Hope the balloons make it until he gets here!

Aidan is having seizures back to back, about 6 in a row, over and over now. Thanks to that whacked neurologist. He was supposed to have been allowed to leave the hospital at noon today... but still no word they're on their way. Preschool is coming to him, bright and early tomorrow morning... 8:30am. Not sure how that's going to go... has me a bit worried.
Can't wait to hold him in my arms again!

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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.