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 …
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 …
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 …
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 …
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 …
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 personality change we have seen in the last 24 hours is remarkable. Lily has always been a happy, content baby but now she’s smiling all of the time, she let me brush her hair (getting all of the tangles out) and put in the pigtails without a peep and even let the nurse and I do her dressing change (which normally causes a total breakdown) without a single tear. Between stretching out her vein and getting rid of the Ng tube, it feels like we’re bringing home an entirely new kid. She’s amazing.