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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Namine’s second Covid vaccine
Namine has gotten her second COVID-19 vaccination shot. It did not go as smoothly this time.
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Retainer check
Namine received some good news at her dentist checkup.
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Namine’s first Covid vaccine
Despite our trepidation on the matter, Namine has received the first of two COVID-19 vaccination shots.
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Independence Day celebrations
We spent two days celebrating the fourth of July with both sides of the family!
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Heart checkup
Namine had her bi-annual appointment with her cardiologist. Her heart is healthy and doing well.
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World Clubfoot Day
Today is World Clubfoot Day, so I’d like to take a moment to discuss how it pertains to Namine.
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Wheelchair cushion decision
Namine has reached a decision about her wheelchair cushions, but it wasn’t an easy one.
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Farewell, Dr. Black
Namine had her final appointment with her bone specialist and foot surgeon.
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Final flower girl dress fitting
Namine’s dress for my sister’s wedding is finally complete.
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Wheelchair cushion delivery
We had a delivery of several new wheelchair cushions.
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New wheelchair
Namine got her new wheelchair, for real this time!
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Scoliosis checkup
The latest checkup for Namine’s scoliosis means good news for the holidays.