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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Sick and crabby
Everybody gets a little crabby when they’re sick. Namine is no exception.
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Making biscuits
A couple nights ago, we made biscuits and gravy. I was relegated to sausage-browning duty (for the gravy) while Jessica and Namine made the mix for the biscuits.
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Going to the park
For several years now, Jessica and I have volunteered at Polish Fest. We’re not polish ourselves, but it’s a fun time and we get some free food in exchange.
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The Spirit moves the heart
Namine is getting more and more into participating in church, and that makes me happy. Paying attention to a half-hour sermon is iffy at best, but that’s also true of most adults, so I’m not really worried about that. But Namine loves to sing, and hymns are a great way to drive children’s participation.
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At the zoo
We had a free day today (technically yesterday, since it’s now after midnight), so our plan was to clean the apartment. But then we thought, you know, why clean when we could go to the zoo? That sounds like a much better way to spend a Saturday.
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A new book
Having finished the junior novelization of Frozen, Namine and I have started reading Mrs. Frisby and the Rats of NIMH.
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Cardiology appointment
Nearly a year after completing the Fontan, Namine’s doctor cut back her medication as a response to her healthy heart.
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Feeling better
I’m happy to say that Namine is feeling much better today than she did yesterday.
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Sick little girl
Things never go the way we think they might. We’ll be fine, everything’s going great, and then BAM — something else comes along.
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Amazing progress
Namine got a late start at school this year because she needed heart surgery.
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Climbing into the car
Today in therapy, Lesley worked with Namine on getting into the car by herself.
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Fun among chaos
Today Namine had a playdate with her friend Norah and I had adult conversation her mom Amanda. We have been trying to go to the zoo for quite sometime, but the weather and the schedules just did not line up until day.