Three Little Engines: Jacen's MRI

Friday, May 15, 2009

Jacen's MRI

Here's Jace waiting to be sedated.

He was mostly upset I wouldn't let him run around. He saw other kids getting to. But since he never stays in the room he's supposed to, and immediately goes for electrical cords, etc., I don't let him roam like other parents do.

The drug to make him act and feel drunk actually affected him, unlike Aidan. It was pretty funny seeing him so loopy. I guess the goal is make them less likely to put up a fight in being sedated. It worked with Jace. He didn't even realize I'd left his side... so hard to leave!!!

But he's okay. And I'm glad one more MRI is over with, one more appt is over with.

1 comment:

Buzybugs pixie.blogspot.com said...: your such a strong girl to be going through what you do. You have troopers for little one's as well, i hope for good results, you guys deserve a break, hang in there.; May 22, 2009 at 10:06 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.