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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Balancing a busy life
Jessica’s mom is still in the hospital. It’s not my place to talk about her situation or circumstance — that’s for Jessica to write about, should she choose to — but please keep her in your prayers. Jessica and Namine will likely be paying her a visit after they’re done with school today, and I…
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School comes with us
I’ve said it before, but I’ll say it again: this is where Namine’s virtual school shows its value. We’re in the hospital again — not for Namine this time, but Jessica’s mom. A day in the hospital doesn’t mean a day away from school, though. As long as we have Namine’s books and laptop, we…
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A throwback post
My Aunt CR came across some pictures and videos of Namine from 2010. Man, was she a little peanut.
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Back to school
Today is the second full day that Namine is completely off her pain medication, with no trace of pain — abdominal or otherwise.* As her health has improved, we’ve been able to resume her schooling. She’s very excited to be learning again.
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Today was a waste of time
Namine continues her current prescription to treat this mysterious abdominal pain. This can’t go on indefinitely, however; so Jessica took her in to see the urologist for more tests and, possibly, an answer as to why this has happened at all. It did not go well, and we know just as much now as we…
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Frequent flyer miles
We haven’t been to the ER this many times in so few weeks in a long, long time. Hopefully, this weekend has seen the end of it.
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Where did our weekend go?
I’ll tell you where — the ER, that’s where. We need a weekend to give us a rest from this weekend.
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What a day
It has been an interesting couple of days. I am happy to say, though, that Namine does not have appendicitis and we are home safe and sound. Jessica and Namine are both fast asleep now.
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Ignoring the observer effect
As you may or may not recall, Namine recently had a sleep study at the hospital last week. The techs stuck wires and glue in her hair and told her to go to sleep, with the hope that this would be a decent indication of how she sleeps at home. And I can’t help but…
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Dermatology appointment
It’s always a bit frustrating for us when we have to deal with doctors who feel they know Namine better than we do. Imagine how maddening it is, then, when we meet a doctor for the first time and she is convinced that we are doing everything wrong.
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Sleep study
Namine had a sleep study last night to observe her restlessness.
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Dinner plans
“Namine, what do you want for dinner?” “We should have bacon and celery.” The girl knows what she wants, I’ll give her that.