Recovery and Prosthesis Update

 Firstly, thank you for checking in to see how Rory is getting on! Pete and I very much appreciate the ongoing support. 

His recovery from the amputation is going excellently. The stump itself is healing really well, and from the day we got home he was putting weight on it and crawling around the house as normal - there's no stopping him; he's so fast! 

He's now completely off the pain relief and down to one simple plaster-type dressing which we change at home once a week (or more often if he pulls it off himself - which tends to happen every few days). Sheffield did provide a stump sock for him to wear over the dressing, but it wasn't so much a compression stocking, more of a tubi-grip bandage to protect the actual dressing. After a few days we noticed that it was aggravating the centre of his skin graft and causing some inflammation, so we stopped wearing that and just made sure he had a normal sock on all the time, to stop him pulling the dressing off and to protect it whilst he crawled. 

All in all, we really couldn't have asked for a better recovery, and we are proud and amazed at the resilience he has shown. 

I don't know if he remembers that he used to have a foot, but he is curious about his stump when he gets hold of it. It's quite possibly the dressing which is piquing his interest though, rather than the limb itself! 

Below is a photo that we sent to Sheffield on Monday, which was three and a half weeks post-op. The black scab is covering the main line of incision, which wraps halfway around the stump. This is where the bottom of his heel has been attached to the front of his ankle. It's this healing that we are waiting for.
The dark patch of skin which you can see stretching up the side is about the size of a pound coin. We are told it is completely normal and will eventually peel off. Some of the skin is starting to peel now (the pale, raised patches on the right hand side is this peeling skin), so we can see this process beginning to happen. At first the stump was very pink, but the colouring does seem to have settled down over the past few weeks. It looks very healthy, and his consultants and nurses are happy too. Mr F and his team have done a fantastic job, and we're incredibly thankful. It certainly looks a lot better than I was expecting it to after three weeks.

Yesterday (Wednesday 26th) we had an appointment at the prosthetics centre, also in Sheffield although not at the Children's Hospital. Our aim was to get an update on next steps and timescales for his prosthetic fitting. We were there for approximately two hours, chatting with both senior consultants but also some of the prosthetic team. We learned several important things:

- Upon inspection of Rory's latest X-Rays, there is some indication that the tightness of the skin graft is tugging at Rory's leg bone where the top and bottom bones were fused, and this force is threatening to dislodge that join. It goes someway to explaining why Rory holds his leg out to the side all the time. We knew that the skin was tight there and would probably need further work, but the conclusion from today's session is that Rory is definitely going to need additional surgery to correct this and we talked about what this surgery might entail. There are still different options that need to be considered so I won't go into too much detail of the many possible routes, but it largely boils down to re-working the bone as well as possibly toying with the graft. This would likely result in a fixator or cast post-surgery to allow the bones to re-fuse once they've been positioned back in line, which probably means immobility in the short term (certainly no prosthetic wearing). Although we always knew it was likely, it was disheartening to hear that once he gets his prosthetic, it won't be long until he essentially has it 'taken away again' in order to undergo further surgery and the consequent recovery. Three steps forward, one step back. 

- The prosthetic technicians won't create the cast for the leg until the stump wound has fully healed, so that didn't happen today. Instead, photos and measurements of the bottom half of his body were taken so that the team can start to prepare or think about how they'll tackle Rory's prosthetic in relation to his stance, leg length and leg shape. He isn't a straightforward amputee because of the injuries to his muscles and bones which have completely distorted the shape of his limb. When his leg is pulled down it doesn't hang straight; as such, a 'normal' prosthetic is out of the window and they're going to have to get creative! I have no idea how they'll do it, I just hope they can build him something that works so that we can get him standing independently, and moving on to the next step in the journey. 

- We should shortly receive our appointment for having his leg cast, and this should be within the next 2-3 weeks in line with when they expect his stump to be completely healed. After that, a 'normal' prosthetic takes roughly 10 days to build (for a patient's first leg). As above, because his leg won't be straightforward it will likely take longer, so we anticipate another couple of weeks at least for this. This is making things incredibly tight for the personal deadline I set in my head a while ago of having his leg by his birthday (5 and a half weeks' time).... but what an amazing birthday present if we do hit that target.

The shape of Rory's leg and the angle when pulled down creates complexity for the prosthetic team

So there was a lot to take in yesterday. It was nothing particularly 'good' or 'bad', it's just more knowledge to be gained and more steps ticked off, but my goodness it's mentally arduous at times. We've just had the relief of overcoming major surgery and were looking forward to a leg, to suddenly be thinking about taking that away again for more surgery. All I want to do is keep my little boy safe, well and happy. As long as none of those things are jeopardised then I can handle it. And when the bulk of his treatment is over I need a long, long holiday!

In the meantime, we try and stay focussed on the bright side and find humour along the way.

Shark attack!!