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Showing posts from August, 2024

Appointments and More Appointments

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One of the unfortunate things about cerebral palsy (CP) are the many co-occurring health issues that go along with it. Because of this, those with CP have more doctors, specialists, and other kinds of providers they see on a regular basis. While the CP itself mainly affects the muscles, other areas of the body are affected as well, which results in more medical challenges.  For instance, besides CP, some of other Faith’s health issues include: ·          Gastroesophageal reflux disease (GERD) and other digestive issues ·          Scoliosis ·          Bowel and bladder incontinence ·          General anxiety Because of these co-occurring conditions, we have more appointments than the average person. At times, it can all be a bit overwhelming. Faith enjoying a nice fall day On September 23 rd , we ended up in the E...

50 Years Ago Today: My First Open Heart Surgery

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I'm tired today. And a bit stressed. I've been dealing with trying to get approved to go to Mayo to get my pacemaker replaced and it hasn't been fun. But today I'm also thinking about how it was 50 years ago today that I had my first open heart surgery. It was called a Waterston shunt and was supposed to improve blood flow and cyanosis. It didn't help my cyanosis much, though because I still had blue lips and fingernails afterward.  Me as a baby with my parents and brother.  Me at 5 1/2 months old, 2 weeks before my first open heart surgery.  It's amazing that my parents were even able to navigate the medical world at that time. They lived in rural Montana and then western North Dakota. Somehow, they managed to find a pediatric cardiologist in Bismarck who referred them to the University of Minnesota. Up until I had a heart catheterization, they had no idea what was going on with my heart.  The doctors just thought that I had a hole in my heart, which is why I ...