Three Little Engines: Dip

Tuesday, March 24, 2009

Dip

Jacen got to Aidan's ketchup and finally decided he likes dip for his fries. He put a ton of it in his hair first of course.

The results of the lead poisoning tests still aren't back, but the water test for bacteria is. There is bacteria in our water. It is bacteria that can only be in there if contamination from sewage/animals is seeping in somehow. That would certainly explain why my sweeties are sick all the time. All I can think right now is a major GROSS. Did I mention I hate renting?

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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.