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Tag: Shriners Hospital
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 [...]
Busy Days…
Ben is getting stronger day by day. We have now renamed his left hand 'Lazy" and Ben has to reach up and touch some hanging gorilla/bear to pay for special treats he wants...ie: ipad = 5 Lazy touches. It seems to be helping. We have shortened our traction times to make it more manageable. Today [...]