Summer 2023 Roundup!
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 seeing it as a hindrance or reminder of his difference.
In June, we attended Run With Rich at Nottingham Watersports Centre, which was an event led by double amputee Paralympian Richard Whitehead (MBE). It was fantastic to meet other amputees as well as Richard himself, for us as parents just as much as Rory. Straight away Rory was pointing out out those who had "legs like me" which is all we want from events like this; just to facilitate that inclusion and sense of familiarity. I also got the chance to meet up with a lovely family who I began speaking to online over a year ago - they have a little boy a few years older than Rory who is a double amputee, and I've no doubt we can learn a lot from them as we navigate this similar path. This whole event was a fantastic starting point for immersing ourselves in this world, and there was a really positive and supportive atmosphere all day. We can't wait to do it all again next year, and find other events like this one.
As part of the 'run' Rory walked 1 mile and raised over £500 for the Richard Whitehead Foundation, thanks to the generous donations of friends and family! For a little boy who has only just learned to walk on his prosthetic, 1 mile was a big ask. At the halfway mark he told me he was tired and wanted to be picked up, but just at that moment Richard appeared to hold his hand and help him along. The volunteers who marshalled the race were all lovely, cheering Rory on all the way. We also had the support of some very dear friends, who travelled from Barnsley to wave Rory on. It took a promise (more like a bribe) of ice cream and a medal, before eventually he made it over the line to big applause from the crowd. Well done Rory! Given that Pete is a triathlete I expect this won't be Rory's last sporting event, but we'll let him grow a bit before we sign him up to a marathon! That night, when we were getting ready for bed, Rory excitedly told me "one day, when I'm big, I'll have two prosthetics like Richard!"
Since that day his walking has gone from strength to strength and he's so confident now. He's just starting to run too, and is really enjoying this new found freedom.
He's also really taken to his balance bike - I think he's enjoying the fact he can go really fast! He only pushes along with his leg, keeping his prosthetic in the air, but its working for him so we aren't going to make him change. He befriended two other little boys when we were camping and was keeping up with them on their balance bikes, despite only pushing with one leg whilst they were rushing along with two feet. When he tested his prosthetic it just dug into the ground like a brake. Perhaps that's something we can try when he eventually gets a knee joint and can move in that circular motion a bit better.
When all is said and done and his legs get a bit tired, he loves nothing more than a 'zipline' with Mummy and Daddy! He came up with this!
Medical
Moving on to the medical side of things, you may remember that we were due surgery in June as a second-phase-correction of the bend in his stump; well timed to happen just after Disney and for him to be healed and recast for a new prosthetic in time for starting his new pre-school in September. Unfortunately, despite chasing and due to other circumstances at SCH, Rory was missed off the June surgery list... and the July list. We were then looking at August/September. Unfortunately that wasn't going to work for us. It was important to us that when Rory started his new school he met his new peers with the confidence that his leg brings, and with the ability to engage as fully as possible in every activity. We didn't want him starting out in a wheelchair, with a walker, or having to crawl to get around. Pete took Rory for a pre-op which was scheduled in June nonetheless, and it was agreed with the consultants that we'd hold back until November-ish. This won't cause a problem for his leg as it's going to be broken and reset anyway. We await a new date....
Prosthesis
Once we knew that surgery was being postponed, it was time to get a new leg. Despite getting the Mickey prosthetic in March, he's had a growth spurt and it's already too short. You can definitely tell when his prosthetic isn't fitting right; it starts to gape at the top and slide off easily because it won't pull all the way up and be flush against his thigh. After getting off the phone with Sheffield following the op planning discussion, we made an immediate call to Blatchford to get booked in for a fitting. Fast forward to now - we picked his new leg up earlier this week! He's really into Bluey at the moment, which is an Australian kids' cartoon about a blue heeler dog and her family. As such, when I was searching for material and asking him what he'd like it was an easy decision for him, and he is delighted to show off his new Bluey prosthetic. He gave a little modelling shoot in the front garden as soon as he got home from Sheffield with Pete (I was working from home so couldn't be there for the appointment).
We're hoping it helps him make some friends when he starts pre-school in a few weeks' time... a milestone I'm far more nervous about than his next operation!
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