Three Little Engines: Hydrops

Monday, October 26, 2009

Hydrops

This is an explanation of why it was necessary to deliver Damon right away instead of waiting. It's interesting, they actually kept telling me the reason for Damon's enlarged abdomen had to be because I wasn't controlling my blood sugars. I proved with blood tests I was in fact controlling them very well. But they didn't look further. That sonographer that spotted the fluid around his heart, liver, and abdominal wall, is an angel. The condition is referred to as Hydrops.

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/hrnewborn/hydrops.html

2 comments:

Buzybugs pixie.blogspot.com said...: Wow, I have never heard of this before.. What a true miracle Damon is and as well as you. I am so glad all is ok.; October 26, 2009 at 2:11 PM
Grandpa Weber said...: I'm sorry I followed the link to the hydrops page. The numbers there are scary. Carolee is Rh- so I had heard of it when they gave her Rh immunoglobulin. I'm guessing you and Damon are the same blood type. We'll pray for the miracles to continue at your house.; October 29, 2009 at 3:03 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.