There's a good possibility Ruby will be a dual reader, meaning she'll learn to read both braille and print. When Ruby was first diagnosed with Aniridia, we were told that she would probably be able to see up to two lines down on an eye chart on her own. We also have the good fortune of living… Continue reading Mom Learns Braille
We've had a few busy weeks of appointments. I figured I'd save up all the news for one comprehensive update that gives you all the latest info in one read. You may want to grab a glass of water for this one. It's long and you'll want to stay hydrated. Genetic Update: The PAX6 Screening As we shared a… Continue reading How’s Ruby?
When I was in grade one, I wore costumes to school. One day I'd be a ballerina, the next, Michael Jackson. I LOVED playing dressing up. I don't remember the last day I wore a costume to class, but it happened, as expected. Somewhere between kindergarten and high school, I learned that people don't do… Continue reading Fitting In while Standing Out
Thank you! This past Saturday we walked 20km in support of Sick Kids Hospital Foundation. The Great Camp Adventure Walk raised over $2.1 million with 2,800 participants walking. With the help of our sponsors, team Rootin' for Roo raised over $2,600. Thank you to Sanremo Bakery and Red Tree Hot Yoga in Mimico for donating raffle prizes that… Continue reading Our Great Camp Adventure Walk
As many parents of newly diagnosed children do, we're doing our best to educate ourselves on Ruby's aniridia diagnosis. During this process, we stumble upon some very interesting resources. I've been pinning some and saving others, but I think a better system is keeping them where they can be shared with others, like say, right here.… Continue reading How do glasses work?
She's great! Over the past month or so, she was sedated again to check her eye pressure, had house visits from her new vision coach Janet, and went for another ultrasound with our nephrology team. On top of that, her little personality is developing more and more each day. She's very happy and content, smiling and laughing… Continue reading How’s Ruby?
Normal is a word I don't really like to use, but it's hard to avoid. What is normal, anyway? The best definition I've heard is "a setting on your washing machine". Normal is an agreed upon narrative that we often aspire to, but that doesn't really exist. It makes us feel safe -- like we're on the right… Continue reading Our Normal