After we arrived home from the NICU, we were greeted by my mom and my brother, who arrived to Vanderhoof the day before. My mom made soup.. was so nice to get a homecooked meal. Brent’s parents came to visit later on that day as well. Later on that week we had an OT appointment in Prince George, to over his splints and stretching. Basically a follow up from the OT in Vancouver. That weekend we had his babyshower at my mother in laws!
On august 5th, we started the casting process again. So he had a new cast put on every week for 3 weeks. Then on August 26, he had a tenotomy. A procedure where they numb the back of his foot and then take a really sharp needle and pock into into his tendon at the back of his foot and lengthen his foot so it is straight. Then he was put into a cast for 3 weeks. Was a difficult month and a half. We couldn’t give him a proper bath till his cast was off. We were shown how to take it off the morning of his appointments so we could give him a bath before a new cast was put on. I got pretty good at giving him sponge baths. He hated them. After finding out he had to be in boots and bars till age three, I got depressed. I got upset every time someone gave Connor something he wouldn’t be able to use for a while and I took it out on Brent. It wasn’t fair of me to treat him that way. And I knew that and tried to work with myself. I went through a spell of feeling really sorry for myself. The morning we were getting ready to head in to PG to get his boots and bars, we heard terrible news from back home. There had been a death in the family. My whole perspective changed in a few minutes. It was no longer “I have to deal with boots and bars” to “I get to deal with boots and bars.” My husband, my son, and myself are all healthy.
It was a bit of a learning curve, being in boots. For 3 months he had to be in them 23/7. He got one hour off a day. And I cherished that hour and really didn’t want to share him. But my husband, being the reasonable man he is, strongly encouraged me to share the hour of cuddles.
On December 2nd we switched from from 23/7 to just having them on nights and naps! I was so happy! He got more freedom! Our doctor told us to make putting on the boots before naps and bed a routine, that way he wouldn’t hate them. He is doing so well with that. After a few months we started letting his last nap of the day go without boots. It is usually a short nap so I didn’t see a point in putting them on for 30 minutes or so. But his foot looks really good.
On February 1, 2021, we flew to Vancouver for some follow up appointments. Connor did so good for his first flight.
We had a heart ultrasound and a visit with OT, plastics, and a surgeon. To sum everything up briefly, the hole in his heart is completely closed, he was out of his splints for the time being.. just to see what his hands would do without them, and he might need surgery in his arms to move some muscles around. The muscles in his triceps are strong enough to keep his arms down. He doesn’t have enough muscle strength in his biceps to left his arms up. So this surgery would take place when he 4. Basically they would move some of his muscles from his triceps and move them to his biceps. They want to see what he will be able to do before that. Because if he can learn to use his muscles, the surgery won’t need to happen. So that is our prayer. And we would appreciate all the prayer we can get!
So yeah that is where we are at right now. I am thankful for our son and even for his condition. It has taught me patience and to think that we are 1 in 3,000! He is such a joy to have in our life. Such a happy baby. He sleeps through the night, he eats well, and naps well. We have been beyond blessed.
signing off- Jolene
