The Little Lion - Rory's Story

 I'm sorry to say that I've neglected this blog recently - life has got in the way, as it has that funny habit of doing! We've made some great progress since my last post and naturally there were ups and downs along the way.  Surgery When I published my last post we were awaiting surgery. That operation happened at the start of December and went really well. Mr F broke and repositioned the bone in Rory's stump so that it was straight, and fixed a metal plate in place to help it heal and continue to grow straight. The metal plate will need to come out in just over a year's time - around early 2025. This is good as it gives us a solid 12 months without any surgery, which may be Rory's longest stint yet!  Recovery Whilst Rory recovered well, this time around there were other factors at play when it came to his rehabilitation. Following surgery Rory wasn't allowed to put any weight on his stump. Trying to keep an active three year old off their leg was a challen

 We're in, we're out, we're in again! Out In my last post I wrote that we were expecting surgery in June, straight after we'd got back from Disney, but due to admin issues within the Sheffield Waiting List team we'd lost our priority status and dropped to the bottom of the list, therefore were not likely to be seen until August/September, best case. At the time, we had said that we didn't want Rory starting his new pre-school without a leg, because we wanted him to have the confidence to make friends on an equal footing, so to speak, as opposed to have some activities restricted due to being wheelchair bound - after his operation he'll be without a prosthetic for up to three months as we wait for his leg to heal, then be cast, then the prosthetic to be made, then fitted, then tweaked. We told our team at Sheffield that we were happy with anything from October half term onwards. That was the last update I shared, back in August. Fast forwarding...! In In Sept

 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

 After being rearranged several times since November 2021, earlier this month Rory finally underwent his ureteral reimplantation procedure. This was a big step for us, albeit nerve wrecking due to the associations with his prior infection, but we made it through.  Context/Background As I have described in earlier posts, Rory's left ureter was formed with a closed valve at the point where it meets the bladder, causing a blockage. As such, urine produced by his left kidney was trapped and backed up without anybody noticing. Eventually that build up of debris caused levels of e-coli (normally flowing through the body in tiny amounts) to reach dangerous levels, resulting in sepsis, meningitis, and all of the complications that followed. At under two months old, the quick and safe solution was to sever the ureter from the bladder and bring it to the surface of his body, giving him a little stoma (a hole) in his tummy where urine from his left kidney was expressed. His right kidney still