Three Little Engines: Aidan's EEG... second time around 8 months later

Monday, November 23, 2009

Aidan's EEG... second time around 8 months later

I'm really proud of Aidan. He was not happy with having to go through this again, but he allowed them to put the monitors on without fighting it, and followed directions. He was a real trooper.

This was about halfway through the night of staying awake beforehand.

This was eating lunch afterwords.

And the boy who got the most sleep in this house last night besides Damon, took a nap first. Totally shocked me he even needed a nap so soon!

So, of course, Jace napped, Aidan still hasn't napped yet, and Damon is miserable sick and fussing. So that means no nap for me. :) Oh well. Hopefully we can get to bed early tonight... maybe 6ish??? ;)

1 comment:

Buzybugs pixie.blogspot.com said...: What an event. Your boys are so darling.. I am so sorry your little one had to deal with another eeg. Have they come to terms with what is going on? I hope your Holiday was great. I'm thinking of you. Take care..; November 29, 2009 at 4:29 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.