Namine
Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.
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Literacy assessment
Namine had her PALS-K assessment this morning. It’s a literary assessment given to students to determine potential placement (and whether a student might need additional instruction), and Namine did exceedingly well.
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Frustrations
The good news, kids, is that the state has determined that Namine still qualifies to receive disability benefits. The bad news is that she still has not received her speech prior authorizations, and likely never will. This means that she can’t receive speech therapy.
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Working side by side
As a programmer, I work remotely from time to time. When I do, Namine likes to have me sit next to her as she does her computer schoolwork.
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At the dentist
Having Pierre Robin Sequence, Namine sees her dentist at the hospital.
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Taco night
A couple nights ago, we had taco night. When I got home from work, Namine was still doing her schoolwork. They’d gotten kind of a late start, so I started to brown the meat for tacos. I would have preferred fish tacos, but this meat needed to be used before it went bad.
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Bracelet
Namine made me a bracelet using patterns. ❤️
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Looking ahead
We went to the mall yesterday. What reason could we possibly have? Why, to ride the train, of course!
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On the way to the hospital
Jessica spent the night at the hospital with her mom, and I stayed at home with Namine. On the way to the hospital this morning, we stopped at Starbucks to get Jessica a coffee.
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In the hospital
Jessica’s mom Charlene is still in the hospital, with home nowhere in sight. While she was initially admitted for heart failure — and a malfunctioning pacemaker/defibrillator — she has recently suffered stage four kidney failure and is now undergoing dialysis. It’s all we can do now to be there for her as much as possible.
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Motives and movies
It’s no surprise to me that in fiction, Namine likes powerful characters. She has limited control over her own situations in life, so heroes (and even villains) who can do what they want, when they want, have a certain appeal.
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Easter basket buddies
We were late to church yesterday. We’ve never been great at getting out the door, but at least we made it in time to catch the sermon.
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Easter eggs and earrings
Namine has had a busy day today. She got to dye Easter eggs with both sides of our families, and she even got her ears pierced.