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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Then and now
How Namine has grown.
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Omega loops
Sounds like something out of a sci fi movie, doesn’t it? It’s not. It’s what Namine had placed in her mouth today, in preparation for her new prosthetic.
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To clip or not to clip
Do you remember the speech pathologist? You know, the one who insisted that Namine’s frenulum needed to be clipped time after time, even though no one else agreed? Well, he’s changed his mind.
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A night at the Urgent Care
Last night after her bath, Namine told me, “Daddy, my throat feels funny.” “Funny, like ha-ha funny, or weird funny?” “Weird funny.” She was rubbing the front and side of her neck, so after getting her dressed I brought her into the living room so Jessica could look at her. After looking in her throat…
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A love of reading
Namine is thrilled about most things that, in so doing, indicate that she is a “big girl.” Not so with chapter books, though. She has no desire to read a book just because it has chapters. In this way she is much like me; a book must pull me in, it must interest me. So…
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Heart surgery next month
We were supposed to have an appointment with cardiology on Friday, but it was cancelled – not by us, though. The nurse called Jessica and said that the doctor had already discussed everything with us that needed to be discussed. There was no point in another appointment, and they would let us know when they…
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Sprinklers, pretzels, and cream puffs
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Seating clinic
Namine has had a lot of clinic appointments lately, the latest being at the seating clinic. The appointment at the seating clinic, where Namine goes for measurements and fittings for the wheelchair and walker, went well.
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Namine’s birthday pictures
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Dental clinic
Namine had a dental appointment late this morning. This is the first appointment with her new dentist; she graduated, according to the hospital, and she liked this one better.
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ENT clinic
Namine had an appointment today at the ENT clinic. These are always the most dreaded, out of all the appointments she could have, especially when there is a good possibility that her ears will need to be sucked out. Fortunately, that turned out not to be the case.
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Namine’s first Icee