Three Little Engines: Good and bad

Friday, June 17, 2011

Good and bad

As Aidan's cognitive ability increases, his physical strength decreases. He colored this picture this morning with no suggestions or prompting, and it's very colorful and creative... what you'd expect from a 6yr old. But the second he woke this morning he started to complain about his legs not working. They are too weak. I've left a message that I just have to wait for the return. If it gets worse I've been instructed to take him to the ER. No, I really would like to avoid that...

Here's Damon just because I got a cute shot of him.

How on earth did he get that cute?!

1 comment:

Anonymous said...: Darling boys. Thanks for keeping up the blog. Praying for everyone.
Love,
Elle; June 22, 2011 at 6:46 PM

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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.