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 [...]
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 [...]
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 [...]
This morning when I got up the doctors were in my room. They looked at me and made me do some of my muscle tests. One doctor said I was a bit weak on one side and saw that my neck doesn't really move. It was really hard for me to squeeze his hand. He [...]
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 [...]
When I woke up this morning I asked Mom if it was movie day. She said it was, and if I worked hard at physio and ate some food today I could go to the movie. I wasn't allowed to eat popcorn though because my tummy doesn't really like food yet. Instead I got to [...]
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 [...]
Crooked Journey 