Well...I definitely feel like an update is in order...it's definitely me - not you! When September hit this year - I knew I was going to be busier than ever, and I was right...so let's start catching up. So, just to refresh...in August I posted about Ben's lump on the back of his neck. We [...]
Tag: Shriners Hospital
An awesome stocking stuffer idea…
So... our local Edmonton Shriners (Al Shamal Shriners) are hosting The Al Shamal Shriners Group Night at the Oil Kings at Rogers Place on Friday February 14, 2020 Christmas and Valentines Day in one swoop! ... so I was thinking - wouldn't that make an awesome STOCKING STUFFER!!! I just wanted to take a minute [...]
The Lump
We've had a pretty amazing year, but I have had some worries. The most significant worry this year was and is "the lump". I started noticing "the lump" in about November/December. I think it was there before that, but to be honest it didn't really start to freak me out until about February. It started [...]
Call Out for Donations…
Hi everyone! Jesse and I will be attending the annual Al Shamal Shrine Gala Dinner Auction and Dance on May 3rd, 2019. The evening hosts a silent auction and a live auction (hosted by Danny Hooper) and the proceeds raised go to help fund their operations. As you know, I'm a huge supporter of the [...]
Back in Montreal…
Ben and I just got back from a super quick trip to Montreal. We left early Thursday morning, and we were back late Friday night. It was a busy trip, but we did get a few opportunities to play tourist, which was awesome! We got in after dinner on Thursday and had dinner with a [...]
Working out the kinks…
So we got home Thursday, and I was able to enjoy some Thai food and wine with the family. Then I had the BEST SLEEP OF MY LIFE! It's so strange to wake up and not have large groups of people looking at you. I may need to buy some Grey's Anatomy posters to hang [...]
We’re Home!
Well...it's been a crazy busy 24 hours, but we are home. I'll fill you in on some of the details. First off, we did our X-rays on Tuesday morning to see how Ben looks standing up. The good news is that his thoracic (chest) area looks really good. It's looking pretty straight. His neck is [...]
Uncertain Beginnings Part A
When Ben was born, it took us about 4 days (I think) to get diagnosed with Goldenhar spectrum or syndrome (depending who you are talking to). At the time, I didn't really know what that meant, I only knew that it affected his eye, his ears, and his spine. We were transferred to our local [...]
Almost There…
Last Monday Ben could not grasp your hand with his left hand and squeeze it in a way that you could discernably feel it was being squeezed. His head was also sitting in a twisted way on his neck that made me shudder and think..."oh my God - we've made it worse". He could not [...]
Bandages are off…
I'm really scared of getting bandages taken off. I don't like bandage takings off more than surgeries. My mom says it's because I am a hairy little monkey. Last time I got them off I cried for a long time. My nurse said that she would do her very best to take them off nicely [...]