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Category Archives: Uncategorized
Birthday Girl
Gracie turned 6 a few days ago. We celebrated at home with her favorite dinner—steak, cheesy fiesta potatoes (my homemade version of her favorite Taco Bell delicacy), and strawberries—and enjoyed watching Gracie’s glee as she opened her presents. She didn’t get … Continue reading
Bridges
Sometimes, you have to stick up for your kid, even if it means burning bridges. We have had a few bridge fires throughout this special needs journey. The first one was probably with the infectious disease department at Children’s Hospital; … Continue reading
Adaptability
One of Gracie’s greatest qualities is her ability to adapt. She never lets circumstance get her down. She just finds a new way. I remember when she was a baby, when we were first learning that she didn’t feel pain … Continue reading
Guts ‘n’ Stuff
We have largely been looking forward to today’s appointment with the gastroenterologist. After three months of a strict gluten-free diet, we were anticipating an appointment where we would tell the doctor that it didn’t work, nothing changed, and could she … Continue reading
Posted in Uncategorized
Tagged celiac disease, colonoscopy, gastroenterology, gluten free diet, infection
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Of MRIs and Fractures
Right now, Gracie is under anesthesia having an MRI of her spine. She went to sleep quickly and easily, breathing in the Skittles-scented anesthesia while I told her a story. She made it look easy. It’s not easy on us. … Continue reading
Lottery
We always knew Gracie was unique, but now that we have a diagnosis for her, we can assign statistics to how rare she is. According to one website, the incidence of PCARP is less than one in a million. A … Continue reading
Dem Bones
Facebook keeps showing me memories of late June hospital stays from the past few years. It’s funny, Grace does tend to be hospitalized at the same time of year over and over again. Last year, it was her knee. We … Continue reading
Dark and Difficult Times
Before our Monday meeting at work this morning, a coworker and I exchanged pleasantries in the bathroom while we washed our hands. I asked her how her weekend was, and she asked about mine. As I looked up to answer, … Continue reading
Confirmation
When Gracie was just 3, we made a trip to New York to see a doctor. This particular doctor was THE doctor to see for kids who don’t feel pain. She specialized in dysautonomia, or dysfunction of the autonomic nerves, … Continue reading
Amazing Gracie 