Back in Montreal…

Ben and I just got back from a super quick trip to Montreal.  We left early Thursday morning, and we were back late Friday night.  It was a busy trip, but we did get a few opportunities to play tourist, which was awesome!  We got in after dinner on Thursday and had dinner with a friend.  Ben finally had an opportunity to have some poutine, which he thoroughly enjoyed.

We woke up on Friday and I called the hospital to tell them not to send a driver to pick us up.  I wanted Ben to have a chance to see the Metro (their underground train), so we walked down there.  We both enjoyed playing tourist a bit and headed over to the hospital.  When we were there, we thoroughly enjoyed seeing all our old friends.  It was wonderful that Ben was feeling so much better this time – we could visit everyone.  We visited our nurse friends and Ben’s new(ish) neck brace was immediately stickered up.  Because it was Friday (MOVIE DAY!!!) we were invited back to watch the movie and have some popcorn after our appointment.

Our appointment went ok.  There were no real surprises, but Ben’s surgeon did notice that he seemed to have a lot less mobility in his neck now than before surgery.  I have been seeing that too.  It appears that this is happening deep at his joint level…not sure why.  We will do what we can to loosen it up a bit, but a lot of this might be irreversible, which is a bit disheartening.   Ben did point out that he had scored a goal in soccer before surgery and another one after surgery, so everything seemed to be working ok.  We all laughed.  Ben said he felt straighter, but we all know that there are significant problems still.  Ben will require another surgery in a year or two to “level his head”.  I refrained from uttering a few “level-headed kid” jokes, which showed great restraint on my part.  So, for now we watch and wait.  This will give me some time to try to find some bio-med engineers willing to build me a vertebrae block with triple action shock absorbers….I’ve been watching Robo Cop spin-off’s and I have some awesome ideas!!!  So, for now we will continue to work with Ben on his physio – we do private physio now, and we are very  happy with our physiotherapist.  Ben is also wearing his neckbrace up to 20 hours a day without complaint, which is amazing. He seriously never complains. Half of the time his forehead is bruised, and we are always trying to switch things up so his skin doesn’t chafe.

After our appointment, Benjamin went upstairs to watch some of the movie and eat his popcorn.  It was a nice end to our day, then we raced away to the airport.  We got in last night (this morning) at about 1:30, so we are both pretty tired today.  All in all, it was a good trip.  Ben’s really been practicing his “bonjour” skills.

Anyways, on a more exciting note….there is a movie that was just released yesterday about a child with Goldenhar syndrome, which is Ben’s syndrome – but the boy in the movie also has a genetic mutation which they refer to as “lightning striking twice” in the book.  Anyways, I am excited/terrified to see.  It is called “Wonder” and is starring Julia Roberts and Owen Wilson.  I read the book this summer, so I am looking forward to seeing it, but I know it will be an emotional journey for me. I had to put the book in the freezer a few times, but I got through it.  I wanted to see the movie at the VIP theatre, so I could grab a wine (or two), but it’s not playing there.  #ChooseKind  Here’s the trailer.  Wonder Trailer

I have more updates coming up soon…lots of exciting things happening at our end, so keep checking!




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13 thoughts on “Back in Montreal…

  1. Thanks for the update. We were planning to see Wonder next week so I’m glad you mentioned it because it will help us to understand Ben’s Syndrome better. I always look forward to your updates. Blessings

  2. Glad to see you are back home and that you made your trip more exciting playing tourists in Montreal. I was thinking of you and was happy to read your update. I will contact you .

  3. Always nice to hear from you and to catch up on Ben’s new. We saw the movie Wonder this week in an
    In an “avant première ” and of course our thoughts were for Ben. His ears must have been ringing!🙃
    We wish you all the best! X0

    1. 🙂 So nice to hear from you. Ben and I were looking at pics of the ‘party’ in our room where all the kiddos were playing that game the other day…good times! I’m hoping to see the movie in the next few weeks! We need to sync our follow up appointments!!!

  4. Ahhhh….you had me at Poutine, Ben.
    You need some jokes to share with your physical therapist.

    What did the snowman have for breakfast?
    Frosted Snowflakes

    What often falls in the winter yet never gets hurt?

    Who says “Oh, Oh, Oh?”
    Santa walking backwards.

    Keep smiling, Ben. I will too.

    1. Ahhh…your cheesy jokes – go well with poutine! I knew you’d be impressed! I’ve been so busy – haven’t had a chance to tell you that we’ve been going to the PT clinic you recommended! Thinking of you!!!

  5. So good to get your up-dates, Karen! It sounds like Ben has the same fun loving attitude as you! Wonder is on my list of movies to see; I can only imagine the emotions of it but what a great story! Sending big hugs and Blessings to all of you as you walk this crooked journey.

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