Ruby Update

How’s Ruby?

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?

Parent's POV

Our Normal

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

Ruby Update

Genetic Results

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

Parent's POV, Ruby Update

Early Days

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