The Little Lion - Rory's Story

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 ...

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...

 A couple of weeks ago we celebrated Rory's first "ampuversary"; the 29th April was a year since the Big Op, and a chance to reflect on all that Rory has achieved (and grown!) within that time. We continue to be amazed by how well he has adapted to his disability; he's like a monkey; constantly climbing, using all his limbs to scale furniture, large toys, anything he can get a grip on. We hope his fearlessness and curiosity will stay with him for life, and carry him through turbulent times.  Little over a week later Rory was back in theatre for his thirteenth surgery, and actually the first op since his amputation. Despite the many trips back and forth to the Blatchford prosethetic centre in Sheffield for casts, measuring and collecting legs, this was our first time back at the Children's Hospital. This time around was for some reconstruction work on Rory's limb, which was giving his orthopaedic and plastic consultants some cause for concern. Where there is a ...

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...