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 …
It’s been a long couple of days. I’ve been hit with bout of insomnia like I’ve never experienced before. I have insomnia often, but usually it just means that regardless of what time I crawl into bed, it’s 2 or 3am before I’m finally able to crash out, but this time was different and I’ve …
We’ve officially made it to the end of the 3rd week of school. I had hoped to update before this, but there have been a few other things occupying my mind and time, but I’m hoping that with this update all of these things will start coming together. I would like to be able to …
Have we ever known Lily to just let a happy event happen without throwing in her own little wrench? We went to Disney World and she pulled out her own g-tube for the first time, this time she had a playground donated and she got an infection around her stoma! We actually felt really bad …
Lily is still awake. She’s not feeling great and has been off. She’s impossible to distract, crying unless she’s being held and generally just messy. It’s been, what we call, in this house, a 2 parent day – where it is literally impossible to put her down for the fear of her vomiting again because …
I sometimes feel as though that as a whole, we need to look at our calendars and start thinking about adopting Rosh Hashanah as the new year for everyone. I don’t think that I’m alone in thinking that September always feels more like the new year than January does. Be it the years of school …