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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Mysterious leg pain
Namine thought her leg was broken. It wasn’t, fortunately, but we don’t know what caused the pain.
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Sleepover at my aunt’s
This past Thursday and Friday, I slept over at my Aunt CR’s house. I was very excited, so I woke up at like, 5:30 in the morning, stayed in bed for another 15 minutes, then got out of bed and got dressed.
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Discovery World
Today we went to Discovery World for a TAC event.
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Pickleball
Namine tried a new sport: pickleball! She fell in love with it.
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Ghostbusters in concert
We all got to experience the Milwaukee Symphony Orchestra playing the Ghostbusters score live!
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Haircut and coloring
In addition to a much-needed haircut, Namine got her first permanent hair color.
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Christmas Eve
We spent Christmas Eve with my side of the family.
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Setting up for Christmas
It took us longer to do so, but we finally put up our Christmas tree.
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Dave & Buster’s
A recent trip to Dave & Buster’s saw some accessibility losses and wins.
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Room swap
We switched our bedroom with Namine’s, like we should have done from the start.
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Christmas piano recital
Namine had her first recital with her new piano teacher!