General Update: Heroes & Villains

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 him cast for a new prosthetic, which is always exciting.

Speaking of new leg, we are due to pick it up at the end of next week! I can't wait; I'm desperate to get Rory up and walking again. He's started walking around independently on his stump, which is a fantastic effort but it does mean that he has to really bend his [good] knee and dip his hip due to the height difference, and I worry about (a) the damage he may be doing to his hips and (b) the muscle memory and 'bad habits' he's getting into that might make walking on a prosthetic at the right height difficult. It has been over three months since the operation which changed the shape of his leg and meant his old prosthetic no longer fit. Three months for a toddler who is just starting to walk is a long time, developmentally, so for me every day counts. 

Video credit: Rory's Nanny, mid broom-attack

On the subject of prosthetics, we've noticed something unusual in Rory's behaviour this summer. He seems to have taken a great dislike to Blatchford and his prosthetist, Zoe (sorry Zoe!) We think it stems from the casting session, where they have to layer his stump in wet bandage to create a cast of his limb (it just looks like paper mache to me). It's a fairly long process, requiring two prosthetists plus one of us to hold him, and must be a strange sensation for him to have to sit through. He was very upset during that process, kicked and screamed the whole way through, and whilst we originally brushed it off, when we returned for a first fitting he cried at the sight of Zoe. What baffles us most is that he doesn't show this reaction to Sheffield, where the many canulas, anaesthetic, poking, prodding and memories of actual pain would surely prompt more of a fear. But no, he loves going to hospital and "seeing Theo" outside. What it means in practical terms is that it's more difficult for Zoe and her team to check the fit of his in-process prosthetic, not to mention taking the measurements themselves, but there's not a lot you can do to battle a two year old who doesn't want to be there!

We're sure this will settle down as he gets older, but to me its not so much a criticism of Blatchford who are a generic mobility centre catering for all ages, but rather speaks volumes of how well SCH do to make themselves such a child friendly place.

Ureterostomy Update

I've lost track of how many times I've said that we're nearly due to have Rory's ureterostomy reversed! It was actually supposed to be today, but three days ago we got a call to say that it was cancelled due to our surgeon needing to travel unexpectedly for a family matter. Back onto the list we go, and we're hopeful for September now. We've agreed with Sheffield that we're happy to be put onto the list of one of two other urology surgeons who know this procedure well, in order to prevent further delay. The procedure itself is standard within this particular speciality and we haven't had a lot of clinic time anyway with Mr M, our original consultant, so we're not too precious about waiting for him providing it's somebody else from within SCH with the same skillset. This differs to his leg situation, which is such a complex and unique case that I wouldn't want anybody but Mr F or Miss T operating on him. 

Rory Turned 2!

On a brighter note, it was Rory's birthday last month, and we celebrated it with a trip to Yorkshire Wildlife Park followed by a family BBQ. Here is his annual one-second-a-day video (although it's more like one second every three days now that I'm back at work and Rory doesn't sit still anymore!). 

What a year it has been! We're having so much fun raising our cheeky, clever little lion. 

Rory turns 2! from Charlotte Cullum on Vimeo.

A look back on Rory's year from his first to his second birthday. 

It was my birthday the week before Rory's so we went to Paris, and whilst there we took Rory to see the Main Man! He loved meeting Mickey (once the initial shock had worn off, as per the photo!) who he watches on tele all the time. He waved constantly throughout the parade and even now that we've been home 6 weeks, he still asks me to play the video of the parade on YouTube on a daily basis. I often play the song ("Ready for the Ride") in the kitchen while cooking or eating dinner and Rory always dances along and waves at a pretend float. I know he probably won't remember this in future, but I will, and right now it's absolutely magical. 

I subtitled this post "heroes and villains". In case you didn't spot it; that's Mickey and Zoe! Poor Zoe, maybe one day she'll earn Rory's affection... it will cost her a lot of smarties though.