What a year 2018 was!!!

Wow!  I can’t believe another year has flown by.  All in all – it was a fabulous year for us!  Our whole family was healthy this year; we had no hospital stays, and Ben seems to have somewhat caught up from the gaps in his learning from missing so much of  grade one.

Here are some of our year’s highlights!

The Neck Brace – Ben wore his neck brace, but we realized (in August) that it wasn’t necessarily helping him, so we wore it only for preventative measures.  Ben’s surgeon doesn’t want us wearing it, so we have agreed to not wear it til the end of June and determine then if things have gotten worse at that point.

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Name Mentor – Ben’s dentist told him in July that he named his new son Benjamin because he thought Ben was such a neat kid.  Ben is taking his new mentorship pretty seriously.

Wish Trip – 2018! In July/August we had our trip of a lifetime to Disneyworld and Give Kids the World Village – we are so grateful for that experience.  I actually even did up a scrapbook to record our memories!  Now I just have to work on the kids baby books ;).

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One of a kind hats!  Aunt Betty and Uncle Don sewed Benjamin two customized winter hats, so his ears won’t get cold when he is outside…Thank you!!!  How awesome is that!!!

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I get a contract teaching pre-k full time for a year.  This is such an amazing full circle for me because I can take all of Ben’s early intervention experiences and the amazing people who worked with us and use that knowledge to pay it forward by really investing myself into my students and doing everything I can to help these fun, crazy, amazing little kiddos create early success in life).  I am overwhelmed by all the interesting things I am learning this year! Teacher hint to parents:  let your kids PLAY (physically) every day – so important for social, emotional, and physical development!

Ben has an amazing support team in school again this year!  We are so grateful for the kindness and compassion of our teachers, administration, and EA’s.  We are so luck to get all the help we get navigating our journey!!!

Loving the fall…video below – this is Ben a year and a half post surgery.  After Ben had his spine surgery, I had no idea what to expect.  I thought all movement would be tight and rigid.  This kiddo doesn’t let anything stop him.  I showed this video to Ben’s surgeon.  He had a minor heart attack, but couldn’t help but laugh!

In October Ben and I went to Montreal again to see our friends and clinic team.  We are told that Ben will require another surgery (which we knew) and we will wait a year or two until he gets bigger for that to happen.    The straightness of his back is still awesome, but his neck that is the problem (a pain in the neck really…haha!).  We cannot fix the actual problem where it is (around the C1-C2 area because the risks associated with this are not even comprehensible).  Instead, we will try another osteotomy (cutting out bone) lower down the spine C6-C7ish (what’s left of it) to help Ben appear more level headed (ha ha…I’m totally going to tell him that one day), but it will never be perfect…who is though?  The doctor also insisted that we stop using Ben’s brace because he wants him to just have fun and enjoy life.  He says not to use it for preventative measures, and that he will fix any problems that come up.  Our orthotist in Edmonton is willing to let us try that out (often when you please one doctor, you are not pleasing another…this is a tricky part to navigating our journey).

Ummmm….here’s some crazy awesomeness that happened in October – Remember when we were at Give Kids the World and I said a lady asked us to fill out a form for Ben to get his own song….well that happened!!!  And he LOVES it!!!  Oh my GOODNESS!!!  We all LOVE IT!!!  This was the most special thing in  the world.  I’ve been trying to update this blog post FOREVER to tell you about it, but I haven’t had a minute…I hope you enjoy this.  Carl Alloco…you have some pretty big fans in this house…you too John Beltzer!   We played this song for Ben’s classmates and they loved it!  I have to admit I find myself humming it every once in a while!

 

Ben’s Song Lyrics

This is a video of us playing it to Ben for the first time!  At first it is hard for him to understand the words.  I had the joy of sharing this video with the song-writer Carl Alloco and John Beltzer (the founder of Songs of Love) – amazing human beings.  Excuse the house – it’s a mess!!!  Chaos reigns!

 

Audiology – Jesse, Ben and I have a surgical consult regarding Ben’s ears.  There are two potential surgeries at hand there.   The first one is to implant his BAHA’s (bone anchored hearing aids) into his skull.   This requires putting two screws into his skull and cutting patches of skin and thinning it out (so hair won’t grow) behind the ear.  (I remind Ben that he seems to really thrive with screws in his body, which he heartily agrees with…does that seem screwed up…haha…killing it!!!).  This is a day surgery, so it should be simple in nature.  This surgery seems like a bit of a no-brainer to me if Ben is using the hearing aids anyways, but we want to confirm a few things on our next hearing test before giving the go-ahead.  There are two positives to come from it…Ben will be able to stop wearing his headband and he should get improved hearing because we will be anchored in directly to the screw on his head.  The second surgery discussed was a reconstruction of his right ear and a minor reconstruction of his left ear.  To do this, they will have to pull out a piece of Ben’s rib and carve an ear out of it (Ben thought they were going to take one of our ears and transplant it from our head to his – which we would totally do if we could – mine of course –  Jesse’s are ridiculously large and meaty).  It is generally a two part surgery with the first part taking a full day.  The second part would take place over a year later and could be optional as the success rates are questionable.  Ben is not big enough yet for this surgery as his chest measurement is 52 cm and he will need to be 60 cm or more in order for us to proceed. Jesse and I are not sure about this one.  I like the idea or his ears being even as it will help with wearing glasses later in life (which was a huge adventure when he was wearing glasses a few years ago), so we will see how it goes.   There are a few other options for this as well, but the rib one seems the best so far.

And I think that is it for us.  It was a good year…we’ll see how 2019 shapes up.  Ben is happy and healthy.  He does get pain from time to time, but it is manageable and he is pretty tough about it (unlike his father who wants to be hospitalized – I wish – for the common cold.  Thanks to everyone for their kind words and thoughts this year.  We look forward to updating you in the future!

 

A year ago today…

Ben’s recovery from surgery a year later.

Well it was exactly one year ago today that Benjamin had his first spinal surgery (installation of the halo and placement of two anchors on his lower spine).  I remember lying awake at the Ronald McDonald House the night before the surgery wondering if I would ever be able to snuggle with him again or if he would be all rigid and rod-like.  Well…I am happy to say we are still snuggling (note to new patients – you will definitely NOT be able to snuggle during traction time).  Ben is learning to skate again (thanks to his teachers who were supervising him and had a few heart attacks along the way!)  He is also playing indoor soccer and dancing…well…sort of…  Anyways, here we are a year later and here’s what’s happening in our life.

  1.  Ben has fully recovered from his surgery.  As mentioned before, we will probably have to go back in to do another osteotomy, but for now he is doing great.  He only scored one soccer goal before surgery, and he has now scored two, so there are obvious benefits to the surgery.
  2. In August he started wearing a new Torture Device shoulder harness/neck brace.  Our intent was to straighten his cervical spine as much as we could in hopes that it would a) minimize his head tilt  b)improve the way his bones grow and c)give a straighten spine for the surgeon to operate on in the future.  We also began aggressive physio too at this time to try to compensate for loss in his range of motion in his neck.
  3. In December we stopped because it appeared that his body was compensating so much that we were screwing up his shoulders.  (Imagine shrugging then dropping one shoulder…that was pretty much what it was starting to look like…so, we retreated, regrouped, and replanned.
  4. In January we came up with a New and Improved Torture Device neck/head brace that goes all the way down to his waist and doesn’t allow his body to compensate.  It was very painful for him initially, but we weaned him in a few hours a day with LOTS of Tylenol when needed.  He can now wear it for up to 20 hours a day.
  5. In January we also STOPPED physio….stopped you say.  Yes, we stopped because the orthotist wanted us to wear the brace as much as possible, and the physiotherapist wanted us to have as much range of motion as possible.  The two sides were counter-productive.  So, we decided to put off the physio while we are working on the bracing.  I think we are starting to see some progress!
  6. We got the “go ahead” to implant his new BAHA hearing aids.  We are going to wait for a while though because I want to be pretty darn sure his hearing is consistent in them.  He has a history of inconsistency, so I think we can wait for a few more tests.
  7. We received a “WISH” from the Rainbow Society of Alberta, so we are excitedly getting ready for that and filling out forms and such.  I can hardly wait to tell you more!  The kids were OFF THEIR ROCKERS when they found out!  I will definitely write more about this!

Anyways, that’s what has been going on this last little while.  Ben is still loving life and is as awesome as ever!

Ummm…yeah….pretty recovered!

Ben - new brace
Ben getting fitted for his new torture device brace
List on drawer at Glenrose A sign I noticed on the drawer in the casting room while Ben was being fit for his new brace… can you see why I thought it was weird?

I Can’t Believe Summer’s OVER!!!

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!!!

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The weirdest (and funniest) Staycation thing ever!!!