Three Little Engines: Sourpuss

Friday, October 9, 2009

Sourpuss

Giving his teddy bear kisses. The bear is still sporting the car bandage from Primary Childrens.

When Aidan gets sick his medicine isn't as effective and he has seizures. If he feels particularly punk, he will sit still and just watch a dvd. Jace on the other hand is a major sourpuss when he gets sick. Yesterday he screamed, I'm not exaggerating, 4hrs straight, and probably more like 6 total. He is one serious sourpuss right now. He had me up bright and early this morning at 3am.

His first PT session was yesterday, before he showed signs of being sick. He so didn't cooperate! He hated having his muscles stretched and made sure poor Crystal (same Crystal as Aidan's) knew it. In all fairness, I warned her. She likes him anyway, and promises to just bring an extra pair of clean clothes every Thursday just in case he works himself into such a frenzy he pukes on her... yes, Matt was puked on, and so was Daddy.

Mom and Dad are on their way. I'm so excited to have them here. I miss them terribly. I know they hate ID weather and are sacrificing big time making the trip by themselves. I'll be very relieved to see them!

1 comment:

Buzybugs pixie.blogspot.com said...: I remember when Trent would get sick, We always worried- he would seizure as well, it's never a fun thing, he would get angry and emotional, Though I miss him terribly and cry daily amongst other things in life right now, I am glad he does not have to deal with the illnesses that are going around, I know we cannot even imagine what these wonderful little one's have had to endure, your sure a trooper with a lot on your plate, I admire you for not complaining, I hope you have a GREAT time with your parents.; October 15, 2009 at 9:41 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.