Three Little Engines: Poor Jace

Tuesday, March 8, 2011

Poor Jace

I get this call from the DDA to let me know Jace fell down some stairs and had a bloody nose. He'd stopped crying and was playing again though. I was really grateful that was all that happened. When the boys got home I could see the blood inside his nose and tried to gently clean it a bit, but he wouldn't really let me.

When he woke up this morning, I could understand why. If you look at the bridge of his nose, it's swollen. It's a really packed in swollen. (Meaning you can't depress it.) Poor little guy.

No comments:

Post a Comment

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.