Three Little Engines: So blinking cute!

Thursday, November 19, 2009

So blinking cute!

Some of the things therapists try to get Aidan to stop, are things he gets from copying me. For instance the repeating/echoing probably came from me, because I found myself naturally doing it to him when he started to regress and condense his speech. Another example would be he will freely give hugs and kisses and say "I love you" because I give them to him freely. Not helpful when you're around your peers as a 4yr old boy.

Last night Aidan came up behind me while I was changing Jace's diaper, and ran his hand over my hair while saying, "Mommy, you are so blinking cute." I say it a lot to all 3 of them, and probably the most often right now, to Damon. This photo was taken right after I'd been holding him in the My Baby Nest carrier. Love that thing! And he does too. One relaxed little dude.

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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.