What a roller coaster of a summer it has been. We have been so busy with renovations, vacations, church events, and medical appointments! Connor has been a trooper through all of them. I am so thankful for him and that he handles the life he’s been given so well. I guess he doesn’t have a choice considering he doesn’t know any better.
On July 27, 2022, we packed up our car and started our long, 9-10 hour, drive to Vancouver, BC. We left home roughly around 6:30am in the morning and arrived in Vancouver.. or should I say, Richmond, around 6pm. Between stopping to eat, construction, and driving through Abbotsford during rush hour, it was a 12 hour day in the car for us. And to top it all off, the weather was ranging between 35-42 degrees celsius….. thats 95-107 degrees fahrenheit. It was really hot out. Luckily our car had air conditioning, and so did our hotel room. We ordered in food to our room and then had a good nights sleep.
The next morning we had 3 appointments. Our first one was at 11am with occupational therapy. Connor had so much fun. Three OT’s sat on the floor with him and played with him and cheered him on, when he did something they hadn’t seen him do before, with cheering and clapping. We found out that Connor loves to be the centre of attention. He had a ball! He was so worn out that he fell asleep in between appointments. They made new splints for him to wear during play time! We felt bad, but we had to wake him for his next appointment.
At 12:30pm we had an appointment to see the orthopaedic doctor. This doctor will be the one performing the tendon transfer surgery on his arms, if and when he needs it. Which will be school age. The doctor was concerned that Connor’s arms weren’t getting strong enough. He didn’t have enough muscle mass in his biceps to use in his triceps. In some cases they can take the muscle from other places in the body, but this doctor doesn’t want to resort to that if he doesn’t have to. It’s more of a major surgery and leaves more scarring. So our main focus now is to strengthen his arms. This doctor recommended getting Connor into water and making him use his arms there. This way he is exercising them and it doesn’t feel like alot of work.
After that appointment we had a quick lunch at Second Cup coffee shop there in the hospital. We remembered from being in the NICU with Connor, that they had the best ham and cheese sandwhich!
His last appointment, for that day was with plastics, at 3:30pm. They look at his jaw more so, and watch it develop as he grows. She was really happy with it and showed no reason for concern. Connor isn’t chewing yet, so I was concerned. She said it woud come yet. We are to keep trying and follow up with speech therapy here at home with any other concerns we might have.
We left the hospital at 4pm and made our way back to our hotel room, where we could cool off. Connor was asleep within 5 minutes of leaving the hospital. The poor kid was wiped after a busy day.
The next morning we had to be at the hospital by 9am for his last appointment. We were seeing ophthalmology. The eye doctor we were seeing closer to home suspected Connor would need eye surgery and referred us to the eye doctor at BC childrens. We didn’t leave the hospital till 1pm. She was on call in the ER and there had been quite a few emergencies. Around 9:30pm, Connor got his eyes dilated. Around noon we finally got to see our doctor. Because Connor can’t “defend” himself, persay, he doesn’t like to be held down. Unfortunately, he wouldn’t hold still for them to look into his eyes. So, my husband held his head still, while I held his feet, so he wouldn’t buck. This poor child screamed the entire time. My emotions didn’t know what to do. The few times Connor has cried like that, I either start balling like a baby or laughing. It sounds cruel but its just me not knowing how to process all the emotions going through my body. I let myself cry. I manged to not ball. But I welled up big time. After the exam was done, we got a prescription change for his glasses and he has to wear an eye patch 1-2 hours every day until our follow-up appointment in October. That’s right.. you read that correct. We are going back in October. Oh well, this needs to be done, so we do it.
We took Connor swimming that evening, and then the next morning we went home. We got home shortly after 9pm. We were all quite tired and ready for a long weekend. Which we got. So yeah, that was our trip to Vancouver. I will link my Youtube video of the trip here somewhere, that way you can see our trip in action!
Thanks for reading and I hope you are enjoying our journey and learning something about Arthrogryposis Multiplex Congenita.
Signing off, The funky Mom
Jolene
PS. Here is the link to our bc childrens hospital vlog https://youtu.be/bZERILulYCs
