Tag Archives: retinitis pigmentosa

A Vision of the Future

Posted on May 19, 2020 by saussi77

When Gracie was younger, she would bristle at being called “blind.” She would adamantly reject the term, saying instead that she could see just fine. Although she was born with only about 10% of normal vision, it was all she’d … Continue reading →

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Hoppy Easter!

Posted on April 16, 2017 by saussi77

Today is Easter, and the kids have been enjoying the day. I mean, who wouldn’t love candy for breakfast, amiright?! Gracie woke up first, at around 6:45. I helped her go to the bathroom, and while we were in there … Continue reading →

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Confirmation

Posted on June 10, 2016 by saussi77

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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Retinitis Pigmentosa

Posted on March 31, 2015 by saussi77

Retinitis Pigmentosa is a blanket term for a group of eye disorders that cause gradual, progressive vision loss. It usually starts in adolescence and affected individuals are legally blind by age 40. Generally, people with RP lose their night vision … Continue reading →

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Brave

Posted on February 3, 2015 by saussi77

We had our first doctor visit of 2015 yesterday. I had texted with Gracie’s pediatrician Saturday because the wound on Gracie’s index finger, where she pulled out her little stump of a fingernail, started to look like it had exposed … Continue reading →

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Independence

Posted on November 15, 2014 by saussi77

Yesterday, Jackson asked a question that stopped me in my tracks. While in the car with me and Grace, he asked if Gracie would have to live with me forever. I froze — Grace did, too. I carefully chose my … Continue reading →

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Coding

Posted on July 25, 2014 by saussi77

For my work, I do a lot of file conversion, including converting Word documents to HTML for web viewing. When the file is converted, it frequently comes through with unwanted code, which I carefully parse out of the HTML file. … Continue reading →

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Blindness

Posted on May 20, 2014 by saussi77

I just read an article in “Good Housekeeping” (yes, I’m like 80) about a woman who lost her eyesight. She doesn’t ever name her eye disease, but she describes its progression, and it’s pretty obvious that she has retinitis pigmentosa, the … Continue reading →

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