Three Little Engines: Sourpuss

Wednesday, June 11, 2008

Sourpuss

This photo says it all. Jacen has been such a pill lately, and Aidan eggs him on even more with typical big brother torment.

Taking his pacifier away...

And Jace trying to get away.

Now he smiles, as he starts leaving, having realized Aidan is done, and I've given up trying to get a decent photo.

As for the recent move... I've had no complaints from Aidan about this house. No prayers asking for Heavenly Father to keep him warm or begging to go back "up stairs." I think all the turmoil is just the fact we are still living out of boxes and not completely settled yet. Poor dudes.

My ultrasound is scheduled for the 3rd. I'm really hoping to get a good look at this new little person. I want to know if we are having a boy or girl. I'm hoping for a boy. I mean, who wouldn't want another one of these little dudes? ;)

1 comment:

The Vegas Veenendaal's said...: Hey, I'm so glad you are moved into a better place. I feel bad for you having to move so much! I thought we had moved a lot, until I started reading your blog! Hopefully you will be settled for a while. I hope you are feeling okay! Oh, come on..... don't you want a little mini Rachel? :) hee, hee.; June 11, 2008 at 10:34 AM

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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.