Some part of me thought that we wouldn’t get here. I wouldn’t let myself actually look this far into the future and see this day. This 5 year old girl standing before me, strong and growing and shining with light, I didn’t think I’d see her. It’s given me new hope, if we can reach …
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 …
The miracle of Christmas may just be that we made it through December. Between our big cardiology visit, Lily’s birthday, a giant ice storm that made our power go away, Christmas and New Years, I’m honestly just a little happy that we are into January and a fresh start at a fresh year. Don’t take …
Cardiology came and went. They sedated, they scanned, they saw, they pronounced her heart strong and her lung pressures stable. They said to come back in a year. It was music to our ears. There was a moment, one breath-holding, heart stopping moment. While Lily was conked out from the sedation (which was rare in …
Guys, it’s a good thing that it’s almost the new year, because I totally need to make a resolution that I’m going to update you all a lot more often. Lately I’ve just been so busy that by the time I can sit down and write a post so many things have happened and I’m …
I wasn’t always this big you know? I started out pretty tiny – 1.78kg to be exact (that’s 3.9 pounds). But over the last year, I have grown bigger and stronger with every day and every week and every month. And now, today is my first birthday and even though there were some sad times …