Three Little Engines: Wellness

Monday, August 29, 2011

Wellness

Poor Jace did need shots. Oh well. At least he wasn't puking and the muscle jerks were calming. He was hiccuping through most of the appt, but the shots got him to stop. :/

Aidan has stopped growing. Again. This has happened before with all the boys, but a few times with Aidan in particular, so I was not expecting the doctor to do anything about it. Goodness knows none of the pediatricians before him ever did.

But he is referring Aidan to a pediatric Endocrinologist in UT.

It would be nice if this guy could give us some more helpful info.

1 comment:

Anonymous said...: Good to hear Jace got some help. We pray Aidan gets help soon with the pediatric endocrinologist.

Love,
Elle; August 29, 2011 at 6:10 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.