A year ago today…

Ben’s recovery from surgery a year later.

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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?
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12 thoughts on “A year ago today…

  1. Absolutely love hearing from you guys! Ben you are the best trooper I know ( along with my Margot of course) 😘
    Looking forward to hearing about Ben’s WISH! 👍🏻
    My best to all of you!

  2. Thanks so much for the update! Seeing Ben dance was awesome! I can’t believe how much he (and and he big sister in the background) have both grown! I am so thrilled to hear that you were granted a wish and I can’t wait to hear all about it!

  3. Thank you for the update, nice to see how much Ben has grown. Always such a great smile. Anxious to hear about a Ben’s wish. Best to all of you.

  4. 1 year ago … A chance encounter at Ronald McDonald House, both of us getting ready for some pretty life changing surgeries!
    You are awesome Ben! And those are some pretty sweet dance moves. 😎
    We are back at Shriners mid March for our 1 year post op check-up.
    Margot is also skating and has asked to play soccer this summer.
    We are fiercely deep into a Star Wars phase and Margot is obsessed with Ewoks! How about you Ben?
    Always so great to get your updates.

    1. So awesome hearing from you guys! Wow!!! It’s so exciting Margot is skating and planning to do soccer. These tough little kiddos!!! I think we go back in May for a check up…it would be nice if we could have a reunion! :). Ahhh…the Ronald McDonald House days! 🙂

  5. I was so pleased to read the update on Ben’s journey and to enjoyed Ben’s dancing moves . Ben, I love your big smile, you are a real trooper , no doubt about that. Did you choose the colors of your brace , they are cool! . When the weather improve a bit I plan to go for a visit and learning more about your granted WISH. Meanwhile if you come to Edmonton , please stop by to chat and have a cup of tea . Love you all. xox

  6. Way to go Ben. Great dance moves. Even skating!! You’d give me a heart attack for sure! 😲
    It always makes me smile to see how well you are doing. Can’t wait to hear all about your WISH. So happy for you and your family. You deserve it. 😊

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