The Little Lion - Rory's Story

 It's been far too long since I've posted an update and certainly not for lack of activity. It's been an incredibly busy summer and I just haven't had chance to share the latest. So I'll try and do a roundup of key leg-related events as well as where we are in the surgery timeline.  Walking Progress Starting with the non medical stuff, Rory has made some great progress and we have exciting milestones/moments to share!  In May we went to Disneyland with family and made incredible memories. Rory was overjoyed and proud to show Mickey Mouse his "Mickey Leg". Mickey signed his prosthetic, which had us in [happy] tears. Later, our prosthetic centre Blatchford coated the prosthetic so that the marker pen wouldn't rub off. Certainly one to cherish! All of his nursery friends were really impressed and its things like this that make the experience of wearing a prosthetic a positive one for Rory; he's genuinely proud and happy to wear his leg, as opposed to ...

I didn't expect to be writing another blog post so soon after my previous, but we've just had a really detailed chat with Mr F about Rory's short term surgical plans, and I wanted to get this information written down before I forget the details.  As we learnt a few weeks ago, Rory is due more surgery to correct the angle of his limb.  After further discussion, we've learned the gritty details of that op; Mr F is going to cut Rory's bone in two places, realign, then hold them together with a pin. He will also remove the pin that's already in there. The new pin will stay in place for 12-18 months in theory, however Rory is a bit of a one off, so it might be ready to come out in 6 months, we won't know. Plenty of clinic appointments to keep an eye on things will be the norm over the next year.  We're looking at scheduling the operation for early June which allows both us and Mr F to get our May holidays out of the way - I do not want him wheelchair-bound fo...

It has been over six weeks since Rory's surgery, and he's healed amazingly as always.  A week after his op we took him back to Sheffield for a dressing change, and following then Pete and I did the weekly dressing changes ourselves at home, with bandages/supplies provided by Sheffield. We sent them photos and they called back to give a thumbs up. No need to take him all the way back to Sheffield when his wound was looking good and we're pretty experienced in this task anyway.  First dressing change compared to last   Now that the bandages are off, you can really see the incredible results from Miss T's reconstruction work.  Below, on the left, is a photo from a year ago where you can see how the patch of skin graft isn't growing and is therefore pulling tightly at the surrounding tissue and causing it to crease. The skin graft was also 'tethering' to his bone due to lack of fatty tissue, which was causing his bone to bend. Stage 1 of this operation happened ...

Recently Pete shared a great video of Rory walking completely on his own; not holding somebody's hand as he has had a preference of doing over the past 8 months. We're both unbelievably proud of the progress he's made recently in terms of his walking. The length of his stump and lack of knee makes using a prosthetic far more challenging than most amputees, as he has a straight leg to contend with. It has meant his walking progress has been much slower than that of a typical toddler; not quite snail pace, just Rory pace. But he's really turned a corner recently and is building up his confidence at walking without holding a hand or another aid. Well done Rory!  However, as we know, progress never happens in a straight line. Just as we feel like we're getting somewhere an operation comes along and Rory is now legless for potentially 4 months - which is an incredibly long time when you're 2 and a half. I'll explain why... Back in May last year Rory underwent rec...

Whilst the blog has been quiet, life has not! There's been quite a bit going on with medical appointments, birthdays, holidays, a Covid case... so I thought I'd take some time to fill you in on the past couple of months.  Surgery & Leg Update At the time of writing my last post back in May, Rory had just undergone his thirteenth surgery which was some reconstructive work on his leg by his plastic surgeon, Miss T. In the weeks following we were back and forth to Sheffield for dressing changes and check ups, eventually changing the dressings ourselves and emailing photos across. The skin healed well, with just a small patch within a crease that took longer than the rest. I'm sure I've said it before, but I'm very thankful that the nurses trust us enough to do so much ourselves at home because twice-weekly commutes to Sheffield for 30 minute appointments are not fun, especially with both Pete and I working full time. He's all healed now so we were able to get h...

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...

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...