Three Little Engines: Just another day in December

Tuesday, December 9, 2008

Just another day in December

Here is our Christmas advent calendar. It's still wrinkled from the moves. I forgot to take it out until today! Anyway, it looks goofy with the folds but I seriously doubt the boys care. I love this felt advent because they move Mary & Joseph down to the Inn, and then Christmas Eve we read from the scriptures and use the rest of the figures to show them what happened.

Poor Jace has tonsils the size of huge grapes. He doesn't have strep though, so "he's fine." I guess they don't care that he keeps choking on them and snores like crazy. Poor guys have had such a bad run of sickness these last several months! I watched Jacen go to climb up in his rocker, but just slide down and fall asleep. He's still a Lear!

2 comments:

The Vegas Veenendaal's said...: Hey Rach,
I would question the docs about his tonsils. All 3 of my kids have had to have their tonsils and adenoids out, and it was because they all snored like freight trains. They worry about that because it can cause them to have sleep apnea.; December 10, 2008 at 11:07 PM
Erin said...: I guess that is what advent is SUPPOSED to be about. :) My kids just get excited for the chocolate that pops out!; December 15, 2008 at 5:33 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.