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 [...]
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 [...]
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 [...]
First of all - just a little housekeeping about the blog - people have been asking me and you DO NOT need a wordpress account to follow the blog - just ignore the line that asks for that. You can do it just using your email account. If you can't get that to work, you [...]
Although bullying these days tends to be frowned upon, it is still discreetly (or sometimes not so discreetly) active in our schools today. You can put on your pink anti bullying shirt for a day, but the next day is teasing as usual. Children with physical disabilities are two times more likely to be bullied [...]
Stand back Robert Downey Jr. - the real Iron Man is laying in a bed in Montreal! Today I wanted to share with you some of the details of our surgery. I was worried to do so before the surgery because so many things could have happened to change our surgical plan. Now that it [...]
Ben's fever resolved itself at about 4:00 a.m. Ben continues to have fast shallow breathing, but it could be related to his pain. He woke up this morning with a significant amount of pain, and we worked with the Acute Pain Management team at MCH to try to make him comfortable. Benjamin was given his own P.C.A [...]
First of all, we've had a bit better and less roller-coastery day than yesterday. We were able to extubate Ben this morning. By the time we did, we were both eager to do so. Once we pulled Ben out of sedation, in order to extubate him, he was extremely agitated with the tube. This caused [...]
After the news from our surgeon last night, Jesse and I were elated! It's amazing the way darkness can try to seduce your thoughts when you have so much at risk. We left Shriners, where we had been waiting, to head across to MCH. We were almost giddy with relief. We ran down and grabbed [...]
K...update. It is 5:30 our time, and I just talked to the surgeon. Ben should be out of the OR in the next hour or so. All the tricky stuff is done - they are just wrapping things up. The surgeon was pleased with how the surgery went. We were able to do both the [...]
Crooked Journey 