Crystal and Jessica live in Toronto with their daughter Lily, who has Down Syndrome. Lily was just admitted to the hospital, and they could use some good wishes, so they’re my Post of the Week.
Lily has had a number of health issues common to those with Down Syndrome. She had two open-heart surgeries before she was six months old to address an atrioventricular septal defect (AVSD), and was diagnosed with Pulmonary Vein Stenosis (PVS), which Crystal helpfully explains on her blog. She gets nutrition from a gastronomy tube (g-tube), which is what caused trouble last week and sent her to The Hospital for Sick Children (Sick Kids), Crystal writes in “Home, Second Home.”
She says, “We are at the point where we need to keep Lily admitted and have her get all of her nutrition by IV.” They don’t know how long this will be necessary. Still, Crystal manages to focus on the positive:
After so many years without a hospital stay, I was quickly reminded of what an incredible trooper this kid is. Even at her worse, she was just so tired and overwhelmed but kept letting everyone poke and prod and pull the bandages on and off. She’s smiling and playing happily with her toys and her iPad (thank GOD for iPads!), and has been napping on and off after a couple of very long days.
And she asks, “So, if you can, keep Lily in your thoughts over the next few days while were figure out how long we’re going to be bunking down at our Home, Second Home, Sick Kids.” Go wish them the best, folks, over at her blog or at her Instagram account, where she shows us more images from their lives in addition to her skills as a professional photographer.
