This is the excerpt for your very first post.
I bought this book almost two years ago. I knew that the syndrome discussed in the book was also my son's syndrome, but I just didn't want to read a book that was going to be a downer. Finally this summer I pulled it out and literally couldn't put it down for three days. My [...]
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 [...]
photo courtesy of www.microtia.net
Wow! I can't believe another year has flown by. All in all - it was a fabulous year for us! Our whole family was healthy this year; we had no hospital stays, and Ben seems to have somewhat caught up from the gaps in his learning from missing so much of grade one. Here are [...]
Ben's recovery from surgery a year later.
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 [...]
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 [...]
School in the hospital has three major benefits: it gives the patients a regular routine which helps to pass the days; it helps distract from the aches and pains of everyday hospital life, and it provides a critical and necessary opportunity to help the students keep up with their studies back home. It also pulls [...]
They made me a walker here. It's pretty big, but I can push it all by myself. Everybody laughs and says they can't believe how good I am at walking. That's funny because I used to always walk. Sometimes I get stuck in doors or go into walls, but someone always helps me unstick. They [...]