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?
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
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?
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