The Little Lion - Rory's Story

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...

 Yesterday's pre-op went really well, so we now have a confirmed date.  Rory is having his right foot amputated on Thursday 29th April; two weeks' today.  (It also happens to be my Mum's birthday... sorry Mum!) I'm delighted that we finally have a date, and that it's so soon. This means that not only do I have ample time left of my maternity leave, but we should also have his prosthetic before I go back to work too, which was always best case scenario for me.  Nonetheless, when the official countdown clock was started a few days ago I was overcome by a sense of... dread? Reality? Doubt?  I know it's the right thing; it's the next step in his journey and it will allow him to regain his freedom. But it has been difficult to focus on what he will gain when at the moment all I'm seeing is what he's going to lose. His perfect, incredible, beautiful little foot, that I've adored for over 9 months. It would have been easier if his foot wasn't workin...

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...

 This month's update is... no update! I was conscious that I haven't really shared any news recently and to be honest it's because there isn't much to say.  We attended Limb Reconstruction Clinic last month, where we met some of the prosthetics team and the other doctors working with Mr F on Rory's care, but other than a bit of a catch up and a few more questions there wasn't really much to report back on.  Next month will see us meeting with Grimsby Physio (as Sheffield have handed over to them now), the Burns/Plastics team for a check up on his leg, and a catch up with Sheffield Paediatrics for an update on his overall medical picture.  Other than that, we have finally been able to live a 'normal' life! It feels great to not be burdened by hospital appointments, and to at last be able to focus on the ordinary happenings of a seven month old.... sitting up, babbling, and the minefield that is weaning.  I want to take this pause to address a major challe...

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...