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 the living room where Ben was looking out the window. I looked out and Ben said “look how beautiful the sun is – it’s pink”. And that is exactly how Ben is. He is now almost exactly 5 months post-op (on the 27th). I have to say that I wish his pain had completely diminished, but it hasn’t. Although he still doesn’t complain, we watch him closely for signs of discomfort, and he does ask me for Tylenol more often than he used to. We took his discomfort (especially when traveling) into account this summer and stayed very close to home with the exception of going to Calgary once to visit the great-grandparents (and Aunty Karen).
Although our summer was fun and we enjoyed hanging out, it was a lot of work for Ben. We went to tutoring two or three times every week. We are still trying to catch up from missing so much school, so it is important that we not let Ben lag over the summer. I know what you’re thinking…”aren’t you a teacher?” Ummmm…yeah, but sometimes I get tired of being the pushy guy around here. Ben enjoys his tutoring, and it’s an opportunity for him to go, get it done, then have fun. We also do speech therapy once a week, which Ben also loves, but it is a lot of work for him too. I think his speech is improving quite a bit. On top of that, we still do physio and a zillion other appointments where we wait forever to see a doctor who spends two minutes with us and tells us to come back in another six months. Anyways, it’s better this way because I wanted to do as many appointments over the summer as possible, so we don’t miss as much school this year. We will still have some follow-ups during the school year, but hopefully I can keep it manageable. We are currently working with our physio to find someone local to do his physio twice a week, which will save us tonnes of time.
Healthwise, Ben continues to get stronger and is eager to run and be active. We have signed him up for soccer in the fall (with his doctor’s permission and a teensy bit of hesitation) with the promise that he won’t get involved in a bench brawl. We will be playing him at a lower level than his peers, so he will be with smaller players (so even if he does get in a bench brawl, he should come out on top). I DIDN’T allow him to go back to dance just yet because his neck is a bit of a mess, and I don’t think the stomping will be good for him yet.
So….his neck…. Well – it seems to have gotten worse – even recently. Although he had limited mobility pre-surgery, his mobility now is quite awful. His physio and I noticed it getting progressively worse over the summer, and we are working with others to figure out why. He can’t really look up, which must be so frustrating for him. I noticed him drinking a can of pop the other day when we were at our friend’s cabin. It was the bottom third of the can and he literally had to limbo to drink it (which I thought was super impressive considering his back is mostly made up of two titanium rods. Anyways, we have no idea what is really going on. The movement to look up generally comes from your cervical spine between C1 and C2. Ben’s surgery was only done on C6 and lower, so it doesn’t necessarily make sense that it would be affected, but it is. Our physio thinks it might be a joint pain (not arthritis), but it’s almost impossible to tell. If that is the case, it is RARE, RARE, RARE that a child would have those problems, so there is no real protocol for treatment, so that is why we are looking for adult treatment (adults have this kind of joint pain), but on kids. So, this time we need an adult specialist who would be willing to work with Ben. Once again, we will be charting new territory on that one. Of course, it could be something entirely different, but it’s hard to say.
After coming home, we had a few other surgery consults, but I think the only one on the near horizon will be his neck. We are looking at doing two jaw surgeries down the road (I thought it was one when he was 17, but I read in some documents from his surgeon that he plans to do one when he is 11). As well, Ben’s ears will be restructured over the next few years. To do this they will pull out a section of rib and reform the cartilage to make an ear. Ben’s other surgeons tell me I need to hurry and do this before the ear guy retires because he MAKES THE BEST EARS! (Our life is definitely surreal at times). I’m not sure what the appropriate response is to that.
We are also currently working on building him a new neck brace for him to sleep in (see pics above), so he will go for a fitting for that tomorrow. The picture above shows Ben getting casted for his new brace….yup….casted. And….guess who got to get their hands all covered in plaster to help out the orthotist….yup….me! My resume of medical skills continues to grow. I totally appreciate that Ben’s team members who know me know that I work best (and shut up best) if they give me something to do…and they’re totally right!
We also have almost mastered his new hearing aids and all the technology that comes with them. I feel somewhat (heavy on the somewhat) confident enough to train his teacher and EA this year on how they all work together. Interestingly, they have given me a receiver about the size of a fingernail and told me it was very expensive and to please not lose it. Sigh…..that sounds like a bit of a recipe for disaster, but we’ll do our best. And… if all goes well with his new hearing aids, they will be mounted to yet more screws in his head (don’t say it – I know what you’re thinking – and you could be right).
Anyways, school is back next week, and the kids are super excited to see their friends again. Even though there is a tonne of stuff going on with Ben, when he wakes up thinking “this is the best day ever – look at that sunrise – I know that all the peeps in his world have been keeping it a happy, wonderful place for him. We have a tonne of stuff to do before we go back to school – cleaning, organizing, shopping, etc. We have some exciting things coming up this year, so check back from time to time and I will send updates!
The reason this is so smooth…my new plaster smoothing skills…you break a leg – call me!
This little man can cook a pork chop!!!
The weirdest (and funniest) Staycation thing ever!!!