The Little Lion - Rory's Story

 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...