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 doing ok, but he can still fatigue quite easily. I am feeling a bit overwhelmed with the task of catching him up to his peers after missing three months of school. We were so lucky to have the help and attention that we had at Shriners, but being absent that long has obvious disadvantages. Our school here is also working hard to accommodate him and help me to get him up to speed.
We continue to have concerns about Ben’s neck, but we are trying to focus on the things we can control rather than the things we can’t, which is easier said than done. As I’ve said before, Ben has an extremely limited range of motion in his neck post-op and his torticollis (twisted neck) is still significant. Besides doing his stretches and strength exercises, we have now implemented what we call ‘Mission Possible’, which is a course in the house where Ben has to wear a headlamp on his head and put his feet in the footprint spots on the floor. He then uses his neck to control where the light shines, and he has to hit all the targets, bulls-eyes and wavy lines. I think he thinks it is fun, which is half the battle, and we can see some slight improvements in his range of motion, so we’ll see what happens over time. Ben has also started wearing a cervical collar to bed at night. This was a bit hard at first, but he seems to have gotten used to it. This allows us to give him a slow, even stretch while he sleeps, which also allows him to work on strengthening more during the daytime. Boy – this kid works hard and has such an amazing attitude. I am one lucky mom!
Ben’s full recovery from surgery will take about a year, with a few of his limitations stretching out to two years, and a couple of minor limitations extending for life. Our biggest areas of focus right now are allowing those bones to heal and fuse properly to the new rods and screws; we also want to prevent accidents like falls. At recess time at school we take him to a quiet area with one friend to play with. They usually play an imagination game or something like that – we are currently hatching dragon eggs. This keeps him out of the ‘combat zone’ of elementary school, while still allowing him to participate in recess and breaks. I am grateful to our school for providing him with his own supervisor to allow him to do this. When it gets a bit warmer, he can go exploring a little bit further.
One month post -op
Ben’s main activity that he is allowed to do is walking. We encourage him to walk as much as he can. His guide also says he can lift up to 2.5 kgs at one month post-op, but I think this surgery is generally designed for teenagers who typically weigh about 60 – 70 kgs. As Ben only weighs about 14 kgs, we are going to continue restricting what he carries until we get to Montreal to confirm this with his surgeon. For now, I am only allowing him to lift about a pound or so, which is not much.
Three months post-op
Ben will be allowed to start swimming, bicycling, and doing light jogging at this point. I am not really sure what we will do about bicycling because we are afraid of Ben falling. I suspect we will just keep training wheels on his bike for the summer to allow him to practice biking without worrying too much about falling.
Six months post-op
At six months post-op Ben will be allowed to do things like skating (not hockey), roller blading, and maybe some cross-country skiing. Again, we will need to make accommodations to these activities because Ben needs supports to ensure that he doesn’t fall as his skills in these particular areas are not really developed. At this point he will also be allowed to try bowling, but for his size we will probably use the smaller balls.
One year post-op
At this point we will be allowed to introduce most of Ben’s regular activities. He will be allowed to go to Phys. Ed class at school and he can now participate in team sports like SOCCER!!! Our lives should return to normal, with little restrictions on daily living. At this point Ben will be allowed to go on amusement rides (within reason), so we are thinking that a trip to Disneyland or somewhere might be in the cards for us next year! 🙂
Two years post-op
Saddle up pardner – we can go horseback riding, but no jumping! What’s an Alberta boy to do?
Things like football, trampolining, and bungee jumping will not be allowed in Ben’s lifetime, which are easy sacrifices to make.
So, we’ve got a lot of work ahead of us and a few sacrifices to make. I know that our crooked journey will continue, but we will see what happens. As for now, our focus is on physio and school, and ensuring that Ben gets lots of rest and healing.
16 thoughts on “Road to Recovery”
I love the pics that you’ve posted and so impressed at how they can make physio fun for him! He’s such s little trooper and you are an amazing mom!!!! I really appreciate the updates as I’m always wondering how he’s doing …
Hugs and Blessings to all of you!
Happy Mothers’s Day to a super mom !!! xx
Thanks Auntie! Sorry for the delay in response – we’ve been busy little beavers transitioning back to the real world. We’ll continue to update. 🙂
Thank you Karen for your post, I know how busy you are and taking time to keep us informed is very much appreciated .
I wish you a Great Mother ‘s Day , you are a wonderful mom and such a good friend.
So many good things ahead Ben ! You are doing GREAT!!! Love you !
Looking forward to seeing you soon!
With his headlamp, maybe he’ll take up spelunking! He is definitely a trooper. So good to have him back in class. 🙂
Lol! or a coal miner….
It’s so good to hear how Ben is doing. He’s a lucky little boy to be surrounded by so much love. Wishing you a wonderful Mother’s Day, you definitely deserve to be pampered on Sunday. Blessings
Thanks and a belated Mother’s Day back!
Nice to hear from you Karen and to catch up on Ben’s progress. He’s a brave little boy. You are lucky to have each other. I admire your creativity in challenging him. Margot visits and has a sleepover with us at least once a week. We love it! My best to you on Mother’s day!
Thanks Louise – I was thinking if you guys when I heard about all the flooding – hope you guys are ok and didn’t have to build an ark!!! We are back at Shriners for clinic on May 30th. Think of you guys often! Say hi to Eric and Jo for me!
Isn’t the word Mom one of the best words you’ve ever heard?
Happy Mom’s Day!!
Question…How many days was Ben a patient at the Shriners Hospital in Quebec?
I have tried to respond to your message three times now, but I keep getting interrupted! 🙂 Happy belated Mother’s Day to you too! I think we were at Shriners for 65 days. If you’re around this summer, text me and bring the kids by. It would be nice to see you guys!!!
Sounds like a great plan! We’d love to play with your crew. We could even bring that big brother of mine along to play with. 🙂 I’d appreciate a visit to compare notes too! Our little beauty was diagnosed with torticollis. Like Ben, Loni is working very hard at stretching her neck and left side. Stollery has been amazing as well as Physio. As you have reminded me so many times…crooked is a beautiful thing.
I’d love to talk to you about that! I’ve spent six years studying torticollis! I have a parental masters degree in neck stretching! :).
I have been thinking about you guys!!! What a cool exercise – I love how you made it fun, but of course you did.
I can’t wait to chat with you again. Ben and I have been to the hospital a lot, but he tires easily, so we are usually in them out. I’m sure we’ll see each other soon!