In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
Wednesday night, I have no nurse. (Different story, don't ask, bleh.) I try to wear him out. He's got school and I have an appointment in Salt Lake. But I also walk a bit of a tight rope. He's got allergies going, it's hot, and if he gets too tired seizures show up. So when we get home about 4 or so, I figure he needs a short nap.
Except "short" is not what he has in mind. He's beat. I try to wake him for his shake vest and food, and he's really not interested. He's not scary, just tired.
Well, okay. There are times when he's exhausted that he just sleeps, pretty much the whole night. So maybe...
10 o'clock, he's still sleeping and I lie down on a mattress in his room with alarms set for 2 and 5:30 am. 10:45 an adult kid calls needing some time, so we talk. Aaron still sleeps. This might work!
Until 11:30. Bing! Bright eyes! Um, really? And the party begins.
And continues the rest of the night.
I guess I should be grateful he didn't start throwing toys at me until 5.
And Thursday and Friday nights? Nights that I had a nurse? Pretty much slept from 9:30 until 8.
I have no nurse the next two Wednesdays, plus family activities all day on the 4th and Andrew's Eagle Scout project all day at the hospital on Thursday.
Life is never dull with this kid. I guess I really wouldn’t want it to be.
In other news, he had his birthday, and we marked eight years since we brought him home from the NICU.
He also got to go to Hogwarts and was sorted into Griffindor (of course! house of the bravest).
He’s had a bit of a tummy ache the last few days, so today he’s staying home from church with Daddy. But through it all, the smiles continue.
There was never a child so lovely but his mother was glad to get him to sleep.