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.