Three Little Engines: Damon's 2 month check (a week late)

Tuesday, December 29, 2009

Damon's 2 month check (a week late)

I'm so late getting this posted. He's even bigger now, at 11lbs 4oz, then at the check-up. In the 50th percentile... wow! As with all our boys, he's short. For height, just like our other 2, he's still in the 5th percentile. They all are. :) Damon is reaching and smiling!!! It totally changes his face and is just so cute! So the quest is on to get it recorded in a photo.

Little smirk.

This is his sad face. He'd been startled and this was a few minutes after. Makes me feel like crying!

Jace trying to console him. Jace is hilarious with him. So gentle and careful, unless he's in a spot Jace wants to climb, then it's as though he's not there anymore.

1 comment:

Buzybugs pixie.blogspot.com said...: He is so cute, he is getting so big and time is going so fast.; December 29, 2009 at 6:57 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.