Tags archives: G-Tube

  • #500 for 5

  • 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 lifetime, especially whe[...]
  • Smile a Little More - or how Facebook Changed My Day

  • 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 had no sleep at all.  The fi[...]
  • 3 Weeks Down, A Lifetime to Go

  • 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 say that we got through the first three[...]
  • A Camp Away from Home

  • 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 for her - the entire site was s[...]
  • Remedy For A No-Sleep Night

  • 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 she's crying so hard.[...]
  • Head and Shoulders...

  • 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 starting, the fresh winds [...]
  • Cookie Monster....I mean, Master....

  • A mom post tonight.... Although we try not to dwell on it too much, there are certainly some aspects of Lily's diagnosis(s) that can be challenging as her parents.  It can be really hard to see her work so hard and not make the gains that you want her to be making.  It can get frustrating when you finally reach a long[...]
  • Sweet Potatos and Joey`s Birthday

  • So, a little while ago, I told you guys that I had this cold.  It was super annoying because I couldn't really breathe and I was all sniffly and gross.  On top of that, it's already hard for me to swallow sometimes (because of my low muscle tone) that when I'm sick it makes it even harder.  This was especially frustrat[...]
  • Merrily We Roll Along

  • The mom's and I are doing really well these days at just rolling with the punches.  When we were first getting used to all my little quirks, it was easy for the mom's to become overwhelmed when I hit a little bump in the road, but lately I've noticed that they seem to be better at watching how things unfold before they[...]
  • Looking Up

  • After the CNE last week, the mom's and I had a very lazy weekend.  There were a lot of afternoon naps and snuggling on the couch while the mom's watched some bad TV (I'm only a baby and even I know that 30 year old women should probably not be watching Degrassi Goes Hollywood, right Uncle Jeff?)  I had some fun time wi[...]
  • Staying Put

  • I'm home again.  I'm hoping to stay here for quite some time because as much as I love Sick Kids when I have to be there, after 66 days I was ready to be back at my real home with just me, the mom's and my dog Ellie. The doctor's finally decided to let me go last Saturday, when they saw that I was eating really well af[...]
  • A Rare Face...

  • A mom post tonight.  They were able to pull the temporary Ng tube yesterday because our Lily is doing so well with her G-tube feeds.  It's a gorgeous face that's been lurking behind that tube.  A tube, that we're now seeing must have been far more irritating and uncomfortable then we had ever thought because the perso[...]