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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Literally 8,000 times faster
I didn’t get to accompany Jessica and Namine to therapy today, but my sister did. Namine walked on the treadmill only because she had therapy with Lesley, and she walked across the mat “eight thousand times faster.” That may or may not be an exaggeration.
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Building strength
Namine’s two physical therapists push her hard, but it’s a rare occasion when she complains that they’re not being fair. And this is not one of those times.
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Speaking a new way
On Thursday I took Namine to the speech pathologist at Children’s. He wanted to see and hear Namine speak with the prosthetic and without it. I had not put the prosthetic in because it makes Namine throw up. So we went without it, I still had it in my purse. Namine did her talking into…
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School on hold
Remember Namine’s difficulty with writing? Jessica and I decided to cut our losses and request the curriculum from the beginning of the year. We could not have received a more understanding response.
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Sharing is the nice thing to do
So we’re at the drive-through.
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Writing is hard
It took Namine almost an hour to complete a single handwriting worksheet. Our first thought is that it’s just Namine being obstinate, but it might belie a larger issue, one that has been brought up before. The problem is, no one can tell us if it’s merely stubbornness or something more.
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Redefining comfort
For some time, Namine has tossed and turned in her bed. We went mattress shopping last week with the intention of finding something more comfortable, but the solution ended up being much simpler.
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Getting ready for school
Our apartment is not that big, and it’s prone to getting messy. Jessica and I have this attitude toward cleaning that it’s more important to spend time with family than to spend cleaning up, resulting in an apartment that looks like it was the victim of a cyclone — sometimes, a cyclone consisting entirely of…
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Checking in
Since our initial vacation plans had fallen through, we set out to meet with Namine’s online school personnel. The meeting itself is tomorrow, but since it’s more than four hours away, we are staying at a hotel tonight.
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A cold attitude
Namine’s favorite part of Frozen surprised me.
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Frozen and yogurt
On Saturday we went out with one of our friends from school for lunch and a movie. But not just any movie, we went to see Frozen again.
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Doing a body good
In an effort to enable Namine a little more in the kitchen, we invested in a Brita water filter. But we’re not using it for water. We’re using it for milk.