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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State testing
Namine’s state testing lasted for two days.
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World Wish Day
Today is Make A Wish’s World Wish Day! Back in 2015, Namine got to make her own Wish: to meet the Disney princesses.
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Optimism
I want to share a story with you.
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Conquering fear
Namine showed me that she won’t let fear rule her.
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State testing and IEPs
Since she’s homeschooled, Namine doesn’t have an IEP. But as we approach the time for her first state testing, we need to make sure certain accommodations can be met for her.
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Winter the dolphin
We love to see other kids’ stories about seeing Winter the dolphin.
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Easter egg hunting
We spent Easter at Jessica’s sister’s house so our girls could go egg hunting.
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Farewell, Dr. Denny
Namine’s yearly appointment with her cranial-facial doctor was bittersweet; he’s retiring, so today we said goodbye.
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Back to basketball practice
It’s been a while since Namine has been to basketball practice.
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Making therapy fun
Physical therapy is not fun. It’s hard work — tearful, painful work. Namine is a hard worker, but even she has her limits, so Jessica and I do what we can to make it enjoyable.
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The good and bad of labels
The dark underbelly of the special needs community is the dislike of the label of “special needs” itself. That, combined with the fact that many able-bodied people are writing and speaking for disabled people (both by professionals and caregivers), can be a recipe for disaster.
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Obamacare saved my daughter
Losing the Affordable Care Act would be devastating. Without it, my daughter would most likely be dead.