We’ve had a pretty amazing year, but I have had some worries. The most significant worry this year was and is “the lump”. I started noticing “the lump” in about November/December. I think it was there before that, but to be honest it didn’t really start to freak me out until about February. It started as a hmmmmm….and gradually increased to a “what the hell?” However – brace yourself – I ignored it. I know what you’re thinking – YOU WHAT?!?!* I KNOW – THAT IS TOTALLY UNLIKE ME!!! However, I have been trained in the art of ‘wait and see’ for the last nine years, so that is exactly what I did. Each month I documented it and took pictures – noticing changes and writing them down. I thought in my head I would mention it to our surgeon the next time I was in Montreal. Although I did nothing, it was constantly on my mind.
One day Ben and I went to his pediatrician for a routine appointment. I hadn’t seen her in quite some time, so I wrote down a list of questions I had for her. At the end of the appointment I decided to mention the lump. I said “Ben has a bit of a lump on the back of his neck – do you mind having a peek at it?” So she had a look and insisted we go get xrays and come right back.
I get along well with most people who work in the medical industry, but the truly amazing ones are the ones who know when to ask parents for help, especially when the condition is on the ‘rarer’ side of the spectrum. This is always the case with xrays because we are a tricky picture to take. We were lucky enough to have a technician who listened and worked with us. I have become good at understanding what the doctors want and how to translate that to the xray technician. Because I have seen so many of Ben’s xrays, I am pretty good at telling them what angle they need to take the xray from to see what they want to see. I have a completely vested interest in minimizing the number of xrays Ben needs. (sidenote: I actually bough stocks in an X-ray company – it seemed like a logical investment). Our xray tech was amazing and kind, but it was clear that he didn’t get a tonne of cervical spine pics that looked like Ben’s. We worked together and then examined the pictures together. I took a screen shot with my phone (as I usually do) and then Ben and I ran back to our doctor’s office. Our doctor said the tech still hadn’t closed off the xray – he was still looking at it, so my doctor would get back to me in the morning.
The next morning I got the xray report which stated that things were generally ok – there were no hardware malfunctions. I sent the report to our surgeon in Montreal. When you get an xray report, there is not that much information in it. It is just words – no pictures. That night I lay in bed analyzing the picture of the xray I had taken. I turned to Jesse and said “do you think that’s a halo effect around those screws? It looks luminescent to me”. He sighed and fell asleep (loudly). I continued to study it while trying to do some research. By the time morning rolled around, I had decided that Montreal needed to see these pictures as well as my photos of “the lump”. I sent an email to our team, and our appointment was quickly bumped up from November to July.
To make a long story short – both kids and I went to Montreal for 5 days as opposed to our normal 30 hour return trip. We had time to check out some amazing churches and do some fun stuff – it was a great time.
We went to our appointment, which took an entire day. Our doctor told us that some of Ben’s hardware was receding from its initial placement and that he would need to do surgery to retighten it. He also pointed out that if we were going in to do surgery, we should do the other vertebral osteotomy (taking out another pizza shaped wedge of spine) that we had previously discussed. Let me break this down for you in layman’s terms: my kid has a couple of screws loose, but after surgery he should be more level-headed….seriously – I don’t make this stuff up! Sometimes I feel like the universe gives me material. Ben and I talk about how funny it is that he’s in a family where we all have a few screws loose, but he literally does. So…that is where we are at for now. We have our surgery planned for sometime in the New Year, which leaves me about 4 or 5 months to worry. We will have to see what happens!