The Little Lion - Rory's Story

Belated Merry Christmas! We hope everybody has had a wonderful festive long-weekend.  A few days before Christmas we attended a clinic with both Mr F (orthopaedics) and Miss T (plastics) for a very important appointment; to discuss the next steps for Rory's leg. This was an opportunity to get both teams in the same room to align their plans and identify where work could be undertaken in parallel.  Surgery - Plastics, Orthopaedics, Urology His leg still needs a lot of work. We always knew this, and knew that the past 6 months have been merely a break from hospital and surgery rather than the end of the road. The reality is that Rory will probably be in and out of surgery for a good few years yet. The main problem we have at the moment is that the skin graft is too tight against his bone. Typically there should be a good layer of tissue for skin to sit on, but there's nothing there above the bone because too much had to be removed in the first place. As a result, there is limited

It's always night time when you start worrying about things, isn't it? When the senses take a break and the absence of light and sound leave a void for you to fill with nothing but thoughts. It tends to go either way doesn't it; it's either an admin session where your To Do list becomes front and centre, or it's a time for anxieties to win their fight for your attention.  In the past I've talked about how writing this blog is therapeutic for me. It enables me to make sense of a lot of emotions, positive and negative. Lately there's been a bit of both, so it felt appropriate to write this post. Rory is suffering with a cold at the moment; we all are! We're Covid-negative, just bunged up and sniffly, and Rory has needed a bit of Calpol to help him sleep. Although he’s merely a little under the weather and is coming out the other side now, it's the first time he's been near what could be deemed as 'poorly' since last year.  To coincide, this

It's easy to package Rory's medical story into a little box of Sepsis/Meningitis/Amputation - all the big scary words that are actually just after-effects.  Not very often do we refer back to the problem that caused of all this in the first place; a blocked valve in his urology system. And it's that particular area that has our attention at the moment.  As a reminder, or for those who have only recently joined the blog; in the days following Rory's initial admission to intensive care back in July 2020, it was discovered that there was a problem with his ureter. The ureter is the tube that carries urine from the kidney to the bladder. Instead of looking like a thin tube as per the diagram below, it was showing up on scans to appear more like an intestine; swollen, bulging and twisted round on itself, struggling for space in his little body. The reason; the valve at the end of the ureter, where the tube meets the bladder, was blocked. It was a simple birth defect, pure ch

When Covid restrictions started to ease and we were able to take Rory out and about, we realised that his appearance (at the time it was his mass of bandages) invoked curiosity from strangers. We quickly learned that we needed to prepare our 'elevator pitch'; a quick fire explanation that answered any questions without taking up too much of our time, nor encroaching on Rory's privacy. We thought we had that one fairly sussed: "He was very poorly when he was a baby. The doctors saved him, but they couldn't save his leg."   And that's fine for most adults. It's the truth in the most simplest of terms so it does the job and allows us to move on. We were sorted... right? The Prompting Incident August bank holiday and our traditional twice-annual camping weekend came around, where we had our first encounter with a strange child (strange in the unacquainted sense of the word, not peculiar). We were in the playground with our friends, Pete was helping Rory up

Evening all, I thought I'd document Rory’s progress so far. As you know it has been slow going with adapting to the prosthetic. Our priority has instead been getting Rory used to his leg and understanding what it will enable him to do.  We are definitely making headway in that department- he tries to help put it on and is an expert at pulling it off. Although he hasn’t taken any independent steps yet we’ve been working really hard on the exercises that Beth, our physio, has instructed us with. One key exercise is standing him against the sofa or coffee table and putting a favourite toy or exciting item (ie a phone or remote control!) at the other end and letting him find his own way across. This helps him learn how to shift his weight across each leg and understand what movements are required to get him to where he needs to be, just like any toddler learning to walk.  He’s taken to that exercise really well! I caught a video last week (see below), and we practise this every day.  H

There have been several times this month when I've thought about posting an update, but so much has been going on that I decided it would be best saved to the end of the month for a July round-up! Prosthetic Update I'm sure the question most of you are wondering is 'how is Rory getting on with his prosthetic?' It's certainly the first thing people tend to ask us.  Truthfully, it's still slow progress. I feel a little guilty for the fact that Pete and I had quite a high expectation that once he had his leg, he'd be off; standing, walking, ticking all the boxes. Especially with how well he was adapting to crawling and getting about on just his stump. But the reality is somewhat different. It's confusing for him. It's not natural and he hasn't worked out yet what this leg will enable him to do. He's much quicker, comfortable and in control of himself on his stump. But that is completely fine; we're going at his pace and we have to remind our

Hi everyone! This post doesn't actually have anything to do with Rory's medical journey or development relating to his leg. But earlier this week Rory turned One, and that's just as a big a milestone as any in our book! Looking back on this video of Rory's year was so emotional for Pete and I - we shared a few tears when we watched it on the morning of his birthday, even though I'd seen it progressing hundreds of times as I was putting it together! It's not until we went back through these clips as a full finished piece that we were reminded just how constant our trips to Sheffield have been, and how much time Rory has spent either in surgery or in bandages in his very short time.  We always knew Covid was going to throw us a curveball, but what a crazy, terrifying, amazing, wonderful, heartwrenching, fun, adventurous, exhausting year it's been! And while it's been the worst year of our lives it's also without a doubt been the best. There is so much

 As many of you reading this will already know through social media, this week we were lucky enough to be called in to pick up Rory's very first prosthetic leg! A moment we've looked forward to for a long time. From the day we were told by the Plastics team that the damage to Rory's growth plate was too severe and that he would need to rely on a prosthetic in order to walk, everything has just been a countdown to this moment. And as much as the last six months have been exhausting in so many ways, the last few days have shown that the hard work is only just beginning.  One thing is for sure; all of these milestones dates are going to be easy to remember; his amputation happened on my Mum's birthday, and the day we received his first prosthetic was my birthday! Now if we can just get him walking by Pete's birthday (December) to keep everything nice and simple... Light-heartedness aside, we are enormously grateful to the team at Blatchford for all their hard work crea

Question : What do you do if you want to walk but you only have one proper leg, and no prosthetic?  Answer : You find a way!  Completely unexpectedly, Rory decided that he'd try his hardest to take some steps today.  I suppose they don't count as 'proper' steps since I'm supporting the walker that he's holding on to, plus it's difficult with the length difference, but you can definitely tell he's practising his technique! What's more impressive is that he's bringing his leg down to do so. We are beyond delighted that he's finding ways around his disability and just cracking on with life.  We are back at the prosthetic centre this coming Monday for him to be measured and cast, so we should have his leg in a few weeks' time. We can't wait to watch him take his first steps, which we now don't think will be long! It's wonderful to write a post that's 100% all good news for a change! The proudest parents in the whole world.

 Firstly, thank you for checking in to see how Rory is getting on! Pete and I very much appreciate the ongoing support.  His recovery from the amputation is going excellently. The stump itself is healing really well, and from the day we got home he was putting weight on it and crawling around the house as normal - there's no stopping him; he's so fast!  He's now completely off the pain relief and down to one simple plaster-type dressing which we change at home once a week (or more often if he pulls it off himself - which tends to happen every few days). Sheffield did provide a stump sock for him to wear over the dressing, but it wasn't so much a compression stocking, more of a tubi-grip bandage to protect the actual dressing. After a few days we noticed that it was aggravating the centre of his skin graft and causing some inflammation, so we stopped wearing that and just made sure he had a normal sock on all the time, to stop him pulling the dressing off and to protect

Well, it's done! Rory is now officially an Amputee, joining a select club of some very special and inspirational people.  I'm pleased to report that the operation went smoothly, and thankful that this event is now in the past.  A-Day I spent the days preceding the Thursday keeping myself distracted from the inevitable overthinking by packing, unpacking and repacking the many bags we were taking with us; a weeks' worth of clothes for Rory and I, toys and books for him, books for me, food and milk for the both of us, as well as the day to day essentials like all the nappies, bibs, etc. There was a lot to pack; a real eye opener for any future holidays! Gone are the days of me slinging an overnight bag over my shoulder... The day itself started early; a 5am wake up to make sure we were in Sheffield by 7:30. Rory was first on the surgery list, so Pete took him down to theatre at 9:15 with the anaesthetist. Then came an incredibly long and agonising morning... it was gone luncht