The Little Lion - Rory's Story

Most of you reading this are friends and family who probably saw Pete and I share on social media earlier this week the amazing news that Rory has taken his first independent steps! He was pushing his walker around pretty much as soon as he wore his first prosthetic leg back at 12 months old, but it's taken a lot of work to get him to let go and take steps on his own at the grand old age of 20 months. Pete and I have practised with him, grandparents have practised, and we have a fab physio called Beth who sees us regularly and has given us some great advice along the way. We're over the moon that he's finally managed it! We can't wait to let Beth know as she has been part of his journey of standing, side-stepping, walking with and then running with his walker, cheering him on every time.  It hasn't been easy for him that his prosthetic is straight (due to the length of his stump not being short enough yet for a knee joint) and also the shape of his leg making the pr...

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 limite...

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 da...

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...