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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Moon gazing
We visited an observatory for a chance to see the moon up close.
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School is finished!
Namine has been home schooled since kindergarten. She has loved and hated being home. Being her mom and her teacher sometimes there are days where things don’t go as planned.
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Little League parade
Namine participated in the annual Little League parade before the Brewers game. ♿
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Tennis practice
Namine was very excited to start tennis practice again! ♿🎾
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Baseball game
Namine had a wonderful time going back to baseball. ♿⚾
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Fishing wish trip
Last month, Namine was invited to go on an all expenses paid fishing trip. She was thrilled to go, and although things didn’t quite turn out as planned, she still had a lot of fun.
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Baseball jersey pickup
We picked up Namine’s baseball jersey today.
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Orthopedic appointment
Namine saw her orthopedic surgeon today. No news is good news, as they say, so today we have good news.
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iSACRA Awareness Day
June 6 is iSACRA Awareness Day, a day for members to show their pride in who they are. ♿
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Cooking Class
Today I went to a cooking class and it was “no parents allowed”, so my dad asked me to write the post for him.
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Overnight hospital stay
After a late night visit to the ER, Namine was admitted to the hospital for a persistent cough, high fever, and low oxygenation.
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Gallery Night
Namine presented her Wisconsin research project for the RVA’s Gallery Night.