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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CHD awareness week
Let’s talk about CHD awareness.
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New orthopedic doctor
We met Namine’s new ortho doctor today.
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Eye checkup
It looks like Namine needs glasses again.
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Virtual speech at the medical college
Jessica, Namine, and I were asked to speak once again to the Medical College of Wisconsin about equipment, accessibility, and patient support.
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Road trip to radiology
We had to go to the hospital to X-ray Namine’s leg.
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Mindfulness and medication
Sometimes we need help remembering the “why,” and that’s okay.
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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.