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
It took about four days after goniotomy surgery for Ruby to get back to being her usual happy-go-lucky self. She slept most of day one, napped and fussed a lot of day two, and started cracking a few "I'm still not feeling great but can't help myself" smiles on day three. By day four she… Continue reading Step by Step
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
This past Sunday night, I set my alarm to 3:45am and 5:15am. 3:45am was my last opportunity to feed Ruby before her 8am surgery (no more milk after 4am). We had to be at Sick Kids to register her by 6am. When the alarm went off, we did a quick transfer from crib to car seat.… Continue reading Ruby’s First Surgery
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
I'd seen enough movies and read enough books to know what to expect when you're expecting. But I never expected this.