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
About a month ago Ryan, Ruby, and I went to Mt. Sinai for genetic counselling. This is a common step after an Aniridia diagnosis, because in some cases, Aniridia appears as part of a larger syndrome called WAGR. WAGR syndrome* is caused by a mutation on chromosome 11 -- several genes in this area are deleted. If we… Continue reading Genetic Results
Since our first post, we've been back to Sick Kids Hospital a few more times monitoring the progress with the meds and staying on top of the pressure in her eyes. At our first check up, the first words out of our doctor's mouth were "Wow - what a difference!" The meds are doing their job… Continue reading Early Days