Femoral Facial Syndrome
Femoral Facial Syndrome is a rare disorder characterized by underdeveloped thigh bones (femurs) and unusual facial characteristics. It presents with a very broad range and variety of symptoms. Namine’s diagnosis of this disorder includes her Caudal Regression Syndrome, Pierre Robin Sequence, and Double Inlet Left Ventricle Heart Defect.
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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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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.
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Microphone stand
For Christmas, Namine received a little microphone and stand. The stand was perfect for us to use in a little homemade physical therapy.
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Dance decisions
Namine told me about a decision she made about her upcoming recital.
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Growing girl
We’ve been told repeatedly that Namine’s legs would stop growing, but it hasn’t happened yet.
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Dental appointment
Namine had a dental checkup today. The time for her jaw expansion draws ever closer, but not as close as we thought.
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Basketball practice
After being out for a few weeks, Namine enjoyed coming back to basketball practice.
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Presentation at Marquette
This afternoon Jessica, Namine, and I gave a presentation to an engineering class at Marquette University.
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On school and support
Every year since Namine was four, we get these memories that show up in our “On This Day” Facebook feed. The memory in question is about us pulling her out of school.
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Valentine’s Day treats
The cooking class on making Valentine’s Day sweets was a delicious experience!