“The truth is, there are lots of times where I feel completely lost in how to feel about all of this, in how to prepare, in how to parent, in how to process experiences, in how to advocate.” – Kelle Hampton There are some people who think we should have this all figured out; that …
We’re back home and on the mend. It was a bit of a tough transistion, getting nursing care arranged for both at home and at school and so Lily was away from school longer than we had hoped, but she went back late last week and has been as happy as they come ever since. …
So, Lily has had a walker since she began junior kindergarten last year. We’ve had some success with it, mostly because the staff at her school are incredible and just keep pushing her. She would take a few steps but for the most part would just use both feet at the same time to push …
The moment that Lily’s surgeon started talking is captured like a snapshot in my mind. For me, it’s the line in the sand that defined “before” and “after”. We, unlike so many parents of children with Congenital Heart Defects (CHD), knew of Lily’s original heart issues, AVSD and Coarctation of Aorta; we were prepared for …
“It looks like she may have stepped in gum, or play-doh.” We’ve been harbouring a little secret around here. Our little bum-scooting maniac is showing signs that she’s no longer content with just having access to the things directly in front of her on the floor. She’s decided that the things on the other side …
5 years. Since just after that horrible day 4 years ago, the goal has been 5 years. “Take her home and grow her,” they told us, “if the day comes when she needs a heart-lung transplant, the success rate improves dramatically once a child is 5.” It seemed impossible. 5 years felt more like a …