1. Here we go again!

Well…I definitely feel like an update is in order…it’s definitely me – not you! When September hit this year – I knew I was going to be busier than ever, and I was right…so let’s start catching up. So, just to refresh…in August I posted about Ben’s lump on the back of his neck. We went to the Shriners hospital in Montreal and they said surgery was imminent. I also posted in August that Ben’s hearing was pretty complicated and that we were planning on doing surgery to implant his hearing aids.

So…here’s what happened/is happening. Ben started getting arm pain towards the end of July…not much at first, but a couple of times a week. As July became August, he was getting pain daily. By September he was getting pain up to 5 times a day – I was worried to say the least. We treated it with hot compresses and pain relievers, but I was worried. I went to Vancouver for a few days in early October and when I returned I could visibly see a difference in the way Ben was holding his head – it seemed lower and more forward. I sent an email to Shriners in Montreal and they quickly got back to me…get an MRI. I called our local pediatrician and she took care of the request for us. The waiting game began. Towards the end of October Shriners called to see what was going on. I called the doctor to see what was happening and to discuss some of my concerns. They upgraded us to urgent status, but there was still a significant wait. So…we waited. Behind the scenes, Shriners was actually calling in favours on their side during that time and they managed to get us an MRI…so we hopped on a plane and off we went. I took Jesse with us because I suspected we were going to have some grown-up conversations, which we did.

Have I mentioned how much I love our team at Shriners….sigh….we always feel so cared for. Anyways Ben did the MRI on his own and he was AWESOME! We thought we might have to sedate him, but no. He laid still and didn’t move a muscle for 30-40 minutes. The MRI tech said she had never seen adults lay so still. We went from the Montreal Children’s Hospital (where we got the MRI done) to the Shriners Hospital next door. First we measured Ben and it appeared he was shrinking a bit. We assumed the numbers were not all that accurate or precise…I don’t know. (When we came back we measured him on Grandma’s wall against his summer measurement, and he was definitely shorter….ummmm yeah…gin and tonic please – hold the lime – no wait…I’ll take the lime too). We all agreed that the way Ben was holding his head was different, and it looked like he had a giant knuckle sticking out the back of his neck (I’m trying to think of a cool super-hero name we could call him…Knuckle Neck or something….able to what?!? I dunno…I’m working on it.) His spine, which was operated on three years ago, actually looks pretty good – there’s a couple of screws loose (that never gets old), but overall the main spine is pretty straight. It’s the part at the top (cervical) that’s giving us trouble…and this is pretty rare territory – and super difficult to do surgery on). So here is our sort of evolving Plan B (for now). We are going to put him in halo traction again for 3 weeks to a month and see what happens to THE LEGENDARY KNUCKLE NECK! (I’m trying it out and so far I think I like it.) If the Knuckle Neck powers decrease (move – align), our surgeon will go in and fuse the vertebrae together. If the Knuckle Neck powers don’t do anything – we will go in and cut out another pizza shaped wedge and Knuckle Neck will become The Mighty Wedge Man (or something….I’m running on a low amount of sleep).

We think this giant neck debacle will occur towards the end of January. So…in preparing for this next leg (or neck) of our journey, I had to quit my job ….sniff… Today was my last day of work, so I should have a bit of time to prepare for being away. It will be just Ben and I going for the first bit…we’ll make other decisions as we go. I am planning to be away for about 5 weeks, but I am preparing for us to be away for at least a few months…we’ll see what happens.

Incidentally, our Edmonton team called us to say we have a surgery date confirmed for implanting Ben’s hearing aids. We had to cancel that surgery temporarily (spring maybe?) in order to concentrate on our spine stuff for now.

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16 thoughts on “1. Here we go again!

  1. Oh my, sending hugs, thoughts and prayers. I will ask Eric tomorrow on an idea for a superhero name

  2. My best to all of you…your crooked journey and your positivity never ceases to amaze me!

  3. So much love to all of you! Definitely a super hero! You are all amazing and we are sending you our prayers for this next part of the journey. Xo

  4. Thank you Karen to keep us updated. You are in my thoughts and I hope I will have a chance to see you before you go back to Montréal . Ben is a brave little guy and I feel a lots of respect and admiration towards you all. Love you , xox

  5. Bless his heart! Through it all, he had the greatest smile! You’re such a good mom! Thoughts and prayers are with you as you move through this part of the journey. Thank you for the posting. Yay Shriners! ( such an insight into what they do). xx

  6. Dear Ben, Madeleine and the Murray family wish you nothing but the best. All one has to do is see your couragous smile and we all know you are a special young man. You got this! Madeleine will be not far from you have back surgery as well. Remember to keep hope alive in your heart, hope is a good thing, maybe the best of things. Im not sure if you live in Victoria but if so one day maybe we will meet.
    God bless you. Murray Family.

    1. Hey Dan! I’m so excited to know a bit of your story and to know that we have so many shared experiences! Please keep in touch if you like – I would love to hear more about you and Miss Madeline and how you are managing this journey. I will find a way to send you my personal information! All the best to you and your family!

  7. Hi! I’m a friend of Kristy Wolfe’s and just read your post. My husband, 6 month old daughter and I live in Montreal (on Nuns’ Island, not too far from Shriners). We would be happy to help in any way we can, so feel free to email me with a date we could bring you lunch or if we can help run errands 🙂

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