Author Archives: saussi77

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

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Special

These past few weeks have been filled with specialist appointments. We saw ortho a few times (seeing her again on the 15th, and who knows how often after that), Grace had her MRI under anesthesia, her annual ophthalmology appointment was … Continue reading

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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

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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

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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

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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

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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

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Research

Today is an important day. It’s my parents’ 52nd anniversary. It’s also the first day that Gracie’s 1:1 from school watched the kids—she is our nanny for the summer. And, it’s the day I got an email from the genetic research … Continue reading

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Supplies

A few weeks ago, I spent hours on the phone with people at a medical supply company and Gracie’s insurance company trying to get one of her expensive wound care supplies covered. This particular product is pretty cool. It is … Continue reading

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The Haps

I wanted to write a post about my little ballerina, who is such an amazing dancer and did so well at her recital Sunday. She knew all the moves; the other girls were looking to her for what to do … Continue reading

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