Three Little Engines: Oh!

Wednesday, August 19, 2009

Oh!

This is a face shot of Damon... his hand and arm are at the top, in front of his mouth, and where it's the darkest on the right is the top of his head. So you can see his right eye and forehead.

The sonographer was so shocked she let out a "Oh!" and jerked the wand off my belly. Damon is huge. Especially shocking, given my history, and two living boys on the small end of the charts. So now the big concern is him being too big.

Started NSTs this week. And the next ultrasound is scheduled for 3 weeks from now, instead of the 4. "He's so big!" That explains a few of my symptoms! :)

1 comment:

Buzybugs pixie.blogspot.com said...: What a cute profile picture! So, are there any worries? When is your due date? How frustrating being that you have been through SO much and the lady whoever let's out an OH! I hope you were not scared. I pray for you often, please know that I do. Your a trooper; August 19, 2009 at 11:23 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.