A Busy Month!

There have been several times this month when I've thought about posting an update, but so much has been going on that I decided it would be best saved to the end of the month for a July round-up!

Prosthetic Update

I'm sure the question most of you are wondering is 'how is Rory getting on with his prosthetic?' It's certainly the first thing people tend to ask us. 

Truthfully, it's still slow progress. I feel a little guilty for the fact that Pete and I had quite a high expectation that once he had his leg, he'd be off; standing, walking, ticking all the boxes. Especially with how well he was adapting to crawling and getting about on just his stump. But the reality is somewhat different. It's confusing for him. It's not natural and he hasn't worked out yet what this leg will enable him to do. He's much quicker, comfortable and in control of himself on his stump. But that is completely fine; we're going at his pace and we have to remind ourselves that even if he had two typical legs he still might not be at walking stage yet. 

The fact that he's stopped trying to pull it off is good enough progress, quite frankly! We had a home visit from our lovely Physio last week and she gave us a great exercise for helping him get used to sharing his weight across both limbs so that he can practise standing against furniture on two legs, as opposed to balancing on his one good leg which he has become so used to doing. 

We still aren't convinced that we've got the knack of getting it on properly every time. It does tend to slip off, especially if Rory shoots off crawling through the house at a hundred miles an hour.

We have another meeting with the prosthetic centre next week, so hopefully we'll get some more advice then and they can double check the fit. 

 

 

Ureterostomy Update

A week ago we were back at Sheffield Children's Hospital for a couple of scans relating to Rory's ureterostomy. First up was an ultrasound to make sure that everything looked ok. Then he had a Nuclear DMSA scan of his kidney. First Rory was injected with a radioactive fluid. We then got to go and have a picnic in the nearby park while the fluid made it's way through his system. We were joined by Rory's Aunt and two year old cousin who live not too far away, which was fab! After three hours we returned to the hospital and the scanner was able to assess Rory's kidney function by analysing the progress of radiation through his kidneys, bladder and stoma. It was really clever stuff. 

I didn't take this photo; image credit to TheStar.co.uk from Feb 2019 when the scanner was first installed at SCH, at a whopping cost of £800k! This is actually the second time Rory has been in this machine, in this really cool room of stars.

Incidentally, this scanner was funded by the Children's Hospital Charity, which is another reason why Pete is running his triathlons to raise money for them.

We were advised to bring in a DVD to distract Rory while the scanner did its thing, so obviously we brought his favourite Roary the Racing Car TV programme. He did really well, laying completely still for the whole fifteen minutes. 

From what we could see on the screen things looked *ok*, but obviously we have to wait for our Urology consultant to review the results properly and come back to us with official feedback. We anticipate that these scans are part of the pre-assessment for the surgery to reverse Rory's ureterostomy, and get his ureter fed back into his bladder, obviously bypassing the blockage that caused the infection in the first place. We're waiting to hear back from Urology now...

24th July - One Year On

I could've written a separate post on this topic, but I don't think it would do me any good to dwell on it too much. Last Saturday marked one year since Rory first fell poorly, when we took him to A&E and didn't return home for three horrible weeks. This year we could have been reflecting on a much more heart-breaking anniversary, but thank goodness all turned out ok in the end. I had a few moments over this weekend where I'd notice the time and think "oh, we'd just arrived at Sheffield about now," but then Rory would throw a car across the room or drop food over the edge of his high chair and I'd be dragged back to the here and now!

One thing that remains important to me is raising awareness of the Sepsis red flags, especially for parents of under-5s. If you visit the Sepsis Trust website, you'll learn that 25,000 children are admitted to hospital with sepsis each year in the UK alone. Over 40% of all sepsis survivors suffer permanent, life-changing effects, like Rory, and sadly 5 people die from sepsis every hour; that's more people dying from sepsis than from breast, bowel and prostate cancer combined. I know it's a really depressing topic and I've been insistent from the start that this blog is a place of positivity, but to me the fact that a baby or child can become so life threateningly poorly without any prior warning is terrifying, and it's my firm belief that we need to do all we can to share knowledge so that those latter two statistics can be reduced. If we'd gone in to A&E able to say "our baby is displaying signs of sepsis" as opposed to "our baby won't settle and he's wheezing" then I wonder if he'd be seen more urgently (maybe, maybe not)? I realise I sound like I'm promoting self-diagnosis which is not the case and not necessarily the correct way forwards, but I'm adamant that awareness of these symptoms should be as commonly known as basic first aid, especially, like I say, for parents of babies and toddlers.

As a reminder, here is the Screening Tool, including the Red Flags, which is used across the UK by the NHS. If you're able to take the time to glance over it then great, I'm glad to have passed it on to at least one person. 

If you've arrived here from social media then you've probably already seen the below images that we shared at the weekend. The first was a photo I took in Grimsby hospital when we were first admitted. At this point we thought Rory just had a water infection and was staying the night as a precaution. We had no idea he was going into septic shock, and it was only a few hours later that Sheffield were on the phone and an ambulance was dispatched for us.

This next photo was taken roughly a year on. Two of our best friends, Kate & James, bought Rory this "Everybody's Different" poem/cushion for his birthday which we adore and are so grateful for.

So as July 24th came to a close, we tried hard to not look at it as an anniversary of a really awful time, but instead as an opportunity to look at how much Rory has overcome and how happy and resilient he is in spite of this. 

Return To Work!

Well, that's gone quickly! In a few days' time my maternity leave comes to an end. It wasn't quite the 13 and a half months I had expected, and there's certainly lots I'd like to have changed, but it has nonetheless been an absolute joy to have had so much time just me and my boy, as well as meeting a bunch of new friends in my lovely mum group, and for that I'm lucky. 

Part of me is looking forward to getting back to a job I loved and tapping back in to old skills, but the other side is, of course, sad that I'm going to miss my days with Rory. Fortunately my bosses have been fantastic, not just with helping me keep in touch but also showing compassion and understanding that Rory's medical requirements come first. Additionally, thanks to Covid I'll be working from home initially which means I won't be far away for a lunchtime cuddle. 

I'm a little nervous that I may discover I've forgotten every single thing about how to do my job (shhh, don't tell them!) but I'm sure it will come back and we'll all get into a new routine pretty quickly. 

 

In General

Other than the medical stuff, he's doing really well! His mental abilities are giving us no concerns whatsoever, although Sheffield do want to do another hearing test as part of a one-year check following the meningitis. He's learning a bundle of new words (largely animal noises/impressions...) which make us laugh every day. It's so adorable hearing his little voice actually speaking. 

One of our latest favourites is a good attempt at "crocodile" which I managed to capture on video here!

Next Steps

As mentioned above, we're back at the Prosthetic Centre next week and we're also waiting for results (and a potential surgery date) from Urology. In the coming weeks we also have appointments with Orthopaedics and Plastics, which will just be check ups on his leg (bone and skin). Other than that we just continue to persevere with Rory's standing and using the walker, and make sure we're facilitating whatever steps he wants to take (literally). 

I think I've brought you all up to speed now!