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 [...]
Category: Life and Follow-ups
Life and Follow up appointments in general
Uncertain Beginnings…..Part B
When Ben was about three or four months old I started to notice a pattern in his breathing while he was sleeping. It went like this....breathe, breathe, breathe, stop...repeat. At that point I brought it to his pediatrician's attention. "I'm worried about his breathing" I said. "He keeps stopping, then it seems to restart". She did [...]
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 [...]
Road to Recovery
Since being home, we have been pretty busy. I must admit I am missing my life of hospital leisure a bit when my days were filled with deciding my next meal. We are working hard on physio with Ben, which can be pretty time consuming. We are also transitioning him back to school. He is [...]
Back in Montreal…
The last six weeks have flown by. I was hoping to write more, but with the amount of appointments we have had, transitioning back to full-time school, and daily physio, it has been incredibly busy. Ben had significant pain in his neck til about six weeks post-op. We think a nerve in his spine was [...]
The ironies in life never cease to amaze me. I sent Ben to school today wearing his brand new top-of-the-line Bone Anchored Hearing Aids (BAHA's) which are worth about $14,000 and I don't even have the FM system or the receivers yet. What he didn't get to bring to school today was his fidget spinner [...]
I Can’t Believe Summer’s OVER!!!
Wow! I just can't believe that summer is over. I was hoping to do more blogs/updates over the summer, but I guess that didn't happen. I will update you now. We woke up this morning to Ben yelling in the living room "Hey everybody - come here....you have to see this!" We slowly walked into [...]
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 [...]
A year ago today…
Ben's recovery from surgery a year later.
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 [...]