Progress Update and Q&A

Over the last month we've had a handful of check-ups with Rory's consultants; we've seen his main Paediatric Consultant who oversees his general health and we've caught up with the Plastics team for a review of his skin graft. We've also had sessions with Physio from both Grimsby and Sheffield. 

Medical Update

Generally, Rory is doing really well! Developmentally he is doing excellently for his age, which was a relief to hear - there is always a worry in the back of our minds as to whether the meningitis will have any long term affects on his mental abilities. Fortunately there are no indications whatsoever that this is the case, although we'll obviously watch this as he grows.

Rory is able to hold himself up and balance on his one leg, which his physios say is a great achievement for any 9 month old, let alone one with pretty much one leg! Although we are still trying to encourage him to crawl, it's looking more and more likely that he will skip crawling altogether and just go straight to walking at some point this summer. His bad leg is just too cumbersome at the moment. This isn't stopping him from getting around, though. He will roll, shuffle, stretch and pull himself to where he needs to be; he's very determined when he sees something he wants!

His skin graft has healed well. The only slight concern there is whether continued use of a prosthetic would rub against the scar and cause problems. We might have more surgery ahead of us, particularly whilst he's young, to move some tissue around and create a bit better coverage in that area. It's something that's being discussed by the Plastics team, so we will keep close to them on the decision making process and do whatever we need to do to ensure Rory's comfort. His prosthetic will essentially become a part of who he is, so he has to be able to wear it with ease. And what's one more surgery after all he's had so far!!

The most exciting and nerve-wracking development is that he's now pulling himself up. If there is anything around him that's slightly above head height he'll be reaching out and putting all his strength into getting up. As long as he can get a good grip, he'll use a lot of upper body strength as well as whatever weight he can put onto his good leg to haul himself up into a standing position. As such, we've made the call through to Sheffield and to Mr F to give the go ahead. We have his pre-op booked in for next week, and we anticipate that his amputation will be in the weeks to follow...

Almost there!

He's up!

Pleased with himself!

Q&A

As mentioned in my last post, I've collated a handful of questions that we've been asked and attempted to answer them below!

What does Rory need physio for?

I've had this asked a couple of times, and actually as things progress the nature of his physio has changed somewhat. 

Most readers have seen photos of Rory and noticed that he holds his leg out to the side; it's his comfy position, partly due to his muscle, partly due to his skin graft. We've been working hard to bring it down straight, and have reached the point where holding his leg down is mostly painless for him. He still prefers to stick it out though! So we have a little more work to do there, and the weight of a prosthetic will help with that. 

Recent physio sessions, however, have focussed more on his ongoing development. Our Grimsby physio comes to our house so that she can see Rory in his familiar surroundings and with his own toys. Together we've been working on encouraging him to crawl, and lately we've been learning techniques to help him get into that standing position using only one leg. She has given us lovely feedback about his progress which again is fab to hear, and makes us so proud. 

Do you believe that Coronavirus has had an impact on the care Rory has received during his hospital stays and visits?

Thankfully, I don't. All of the doctors and nurses who have looked after Rory have been amazing, especially in Sheffield with whom we've developed fantastic relationships. The only noticeable difference (other than the one parent rule whilst we were in-patients on NSU) has been the face masks, and probably fewer cuddles with his nurses. But if anything, I think the additional PPE has made everyone a lot more expressive with their eyes! Certainly Rory isn't fazed by face masks in the slightest, and he can still tell when somebody is smiling at him, and smiles back. 

Do you have any clearer idea of when his amputation will be?

As mentioned above, Rory is developing really fast which is great news, and means that the op will be sooner rather than later- we are talking weeks, not months. This is fantastic for many reasons; 

1) we get the worry and the trauma of the op out the way and put to bed. 

2) Rory will be able to move onto the next stage (standing on both legs, which in turn will help him move on to walking)

3) I still have a few months of maternity leave left, which is exactly what I wanted. 

In the future, what do you feel will be the biggest challenges for either yourselves or Rory?

Once we've overcome the initial hurdle of learning how to use a prosthetic and teaching Rory to walk, I really don't envision too many challenges relating to our family life. I truly don't think we will let it affect him. Yes, there will be house adaptions that will absolutely need to be made in order to accommodate his needs, and there will be certain things that he just won't be able to do until he gets his knee joint in a few years (like riding a bike), but after that the only things I'm worried about are external factors: specifically, other people. We all know that children and adults alike have the capacity to be cruel. I really hope we are at the point where we are raising the next generation to be better. Especially as disability and equality is now at the forefront of social awareness, and culturally becoming more 'accepted'. If I'm being honest, I dread the day that Rory comes home from school upset because somebody has made a nasty comment about his leg. Equally, I worry that adults will stop him participating in things because of their perceptions of his abilities. But then I know it's up to Pete and I to nurture that resilience in him in anticipation of any such challenges, and to encourage that determination that he's already showing us he has in abundance.

How's weaning going??

Ah, weaning. An absolute pain! I get the feeling that you either adapt to it straight away and love the journey, or you dread mealtimes and contemplate keeping them on milk forever... I'm the latter. 

Fortunately it's getting better each week. Rory will try anything; it's the actual swallowing that he just isn't bothered about. Purees and melty snacks are absolutely fine and he'll eat plenty, but with 'real' food it's slow progress, whether that be specially baked 'baby recipes' like sweetcorn fritters, or off-cuts of our meals. He is getting there though, and it became easier once I stopped obsessing over how much he was actually consuming and accepted that it's tasting and exploring at this point.

 

Thank you to everyone who asked a question!

By the time I write my next post, it's mostly likely that we will have a date for Rory's op, so I'll keep you posted.