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...

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...

Over the last month we've had a handful of check-ups with Rory's consultants; we've seen his main Paediatric Consultant who oversees his general health and we've caught up with the Plastics team for a review of his skin graft. We've also had sessions with Physio from both Grimsby and Sheffield.  Medical Update Generally, Rory is doing really well! Developmentally he is doing excellently for his age, which was a relief to hear - there is always a worry in the back of our minds as to whether the meningitis will have any long term affects on his mental abilities. Fortunately there are no indications whatsoever that this is the case, although we'll obviously watch this as he grows. Rory is able to hold himself up and balance on his one leg, which his physios say is a great achievement for any 9 month old, let alone one with pretty much one leg! Although we are still trying to encourage him to crawl, it's looking more and more likely that he will skip crawling al...

Before jumping into the skin graft journey I feel it's a good time to look back at how much progress we've made over the last two months, despite the fact that reduced visits to Sheffield have meant things have been pretty quiet for us.  This photo was taken on 5th January, at 6 months old.    Looking pretty different to 5th November, 4 months old.  I'll run through the various points of note in the November image:  1) The big one is the Vac Dressing. That's the machine in the black bag which is attached to Rory's leg. Regular readers will recall that the vac was permanently attached to Rory for about two months, from when the dead skin had been debrided to once the skin graft was mostly healed. Its purpose was to keep the open wound clean and clear of infection, and also to encourage blood vessels to grow upwards and prevent a dip or crater in his leg as the graft healed. We were all glad to be rid of the vac! 2) Difficult to see on this image but behind the le...

Disclaimer One:  I should start this and every post with a disclaimer that any of the medical facts I discuss are mine and Pete's interpretation of what we've been told by doctors and nurses. They may not necessarily be 100% accurate as we have been overwhelmed with information, but are our best attempts at understanding the extensive details of Rory's illness and recovery. Disclaimer Two:  This post contains some upsetting photos that up to now we haven't shared. Please be prepared to see some graphic images of Rory's leg injury.  Development of the Extravasation Wound In my last post I described how the Extravasation injury was caused (a leak from an IO line), and how we originally expected the long term damage to be some discolouration or scarring.  During Rory's stay on NSU he received regular visits from the Burns Nurses who came to redress his leg (as the skin was being handled in a similar way to an extreme burn), as well as the Plastic Surgery Team who w...