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?

Lifetime

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.