photo courtesy of http://www.microtia.net
Tag: Goldenhar syndrome
What a year 2018 was!!!
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 [...]
A year ago today…
Ben's recovery from surgery a year later.
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 [...]
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 [...]
The Gift of School
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 [...]
I like to move it move it…
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 [...]
Our Superheroes wear Fezzes
Ya, I know you think I misspelled that, but I didn't! The plural of fez (a flat topped hat) is fezzes or fezes. I thought fezes looked pretty similar to feces, so I opted for the first spelling and "Our Superheroes Wear Feces" is a way different story than I intend to tell at this [...]
Valentines Day
Today was super awesome! This morning before anyone was even awake my mom and I dropped off candies and Valentines at everyone's door. After breakfast, I went to school, but in the middle of school some people from the Starlight Foundation came in and made cupcakes with us. The main cooker was a clown named [...]
Quiet Sunday
Today was a very good day here. I do not have to stay in my room anymore. I was not sick this morning, and my nurse took my second IV out of my arm. Mom and I went to the playroom and did some Valentine's cards. It is very hard to look down, so I [...]
Crooked Journey 