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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Frenectomy follow-up
Yesterday Namine had a clinic appointment to follow up on her frenectomy. Frenulotomy. Frenulectomy. Just pick a word, I guess.
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Bedtime
Daddies know everything.
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Solidarity
We woke up early because today was a big day. Today was Al’s Run/Walk in support of Children’s Hospital.
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Piano lessons
A few nights ago, Namine had her second piano lesson.
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First impressions
Namine and I started reading a new book last night. This one is for school, and since it’s a little too advanced for her reading level, I’m reading it to her. It’s about Claude Monet.
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Headaches
Namine has been complaining of headaches for over a month now, so last Friday we called the hospital to have her seen. While there is a headache clinic at the hospital, Namine’s doctor wanted to see her himself before just sending her off to the clinic.
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Special Needs picnic 2014
I always confuse the location of the picnics for the Children’s Hospital’s Special Needs Program and the Herma Heart Center. We missed the Herma Heart picnic, but fortunately we made time for this one. Namine was glad to see so many friends.
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Keep your chin up
September 5 is Pierre Robin Sequence (PRS) Awareness Day!
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The Unboxing
We have exciting news: today was the pickup day for our Al’s Run/Walk shirts!
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Throwback Thursday
Wanna hear something crazy? Namine has had two benefits thrown for her, because apparently medical equipment and care are expensive. Who knew?
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The kindness of strangers
We took Namine to a little water park today, and she loved it.
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Foot stretching
The pain is always there, but Namine rarely talks about it.