Three Little Engines: Aidan singing

Tuesday, November 6, 2007

Aidan singing

It took 6 tries to get this video loaded... so I'm glad it's finally on here. Aidan loves the "Apostle Song," and for some reason calls it the "monkey song." I'm sure I am just misunderstanding him in some way... :) As you will hear, he has a fair amount memorized already. He loves to sing. He has the entire train songs CD memorized, "Twinkle, Twinkle, Little Star," and more.

1 comment:

Erin said...: That was so good!! Way to go Aidan! You will have to let me know where you got that song from. Right now we have started listening to the Christmas carols (we started day after Halloween) so hopefully Ellie will know most by Christmas... she already knows most of Jingle Bells. Very cute video, thanks for sharing!; November 7, 2007 at 7:18 PM

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.