The Little Lion - Rory's Story

 This month's update is... no update! I was conscious that I haven't really shared any news recently and to be honest it's because there isn't much to say.  We attended Limb Reconstruction Clinic last month, where we met some of the prosthetics team and the other doctors working with Mr F on Rory's care, but other than a bit of a catch up and a few more questions there wasn't really much to report back on.  Next month will see us meeting with Grimsby Physio (as Sheffield have handed over to them now), the Burns/Plastics team for a check up on his leg, and a catch up with Sheffield Paediatrics for an update on his overall medical picture.  Other than that, we have finally been able to live a 'normal' life! It feels great to not be burdened by hospital appointments, and to at last be able to focus on the ordinary happenings of a seven month old.... sitting up, babbling, and the minefield that is weaning.  I want to take this pause to address a major challe...

Before jumping into the skin graft journey I feel it's a good time to look back at how much progress we've made over the last two months, despite the fact that reduced visits to Sheffield have meant things have been pretty quiet for us.  This photo was taken on 5th January, at 6 months old.    Looking pretty different to 5th November, 4 months old.  I'll run through the various points of note in the November image:  1) The big one is the Vac Dressing. That's the machine in the black bag which is attached to Rory's leg. Regular readers will recall that the vac was permanently attached to Rory for about two months, from when the dead skin had been debrided to once the skin graft was mostly healed. Its purpose was to keep the open wound clean and clear of infection, and also to encourage blood vessels to grow upwards and prevent a dip or crater in his leg as the graft healed. We were all glad to be rid of the vac! 2) Difficult to see on this image but behind the le...

We are getting excited for Rory's first Christmas, as are the few family members who we will be able to share the day with (cue another Covid grumble). Even though Rory won't know what's going on, it's lovely to be able to start to pass on traditions from our own childhoods. Additionally we've watched Christmas films (well, Pete and I have whilst Rory mostly napped through them), we've eaten homemade treats (baked by my Nanny, not me, because I can't seem to find the time to bake with a clingy 5 month old) and wrapped plenty of gifts for our closest friends and family (I love wrapping!). Everything always seems to feel a little better in December.  Nonetheless, medically it has been a trying few weeks. Writing this blog has always felt like a form of therapy for me; it's more than just logging events, it's being able to comprehend my own thoughts and feelings and help organise my mind. As such, I think it's important to be honest about the fact t...

It's safe to say that 2020 has been a pretty terrible year for a lot of people, us included.  Rory's arrival has been, for us, one shining light in the middle of chaos and gloom.  Since early November we've seen photos of Christmas decorations popping up across social media (again, us included), partly because during lockdown there's little else to do on a weekend, but more so because I think there's a shared feeling that the sooner we get Christmas over and done with, the sooner we can wave goodbye to 2020 and happily welcome in 2021. I'm certain that none of us actually believe that we'll wake up on the morning of the 1st January and Covid will have disappeared for good and the economy will have boomed overnight. But there's something about the ticking over of the date that inspires a level of optimism. "We made it through 2020. This year has got to be better." For our family, the turn of the year doesn't just signify a change in date but...

It seems fitting to share a post about gratitude at the end of Baby Loss Awareness Week. Sadly, like all of us, I know many families who have lost a little angel. I've given our own little miracle an extra cuddle tonight on behalf of all those parents, as I'm sure many of you have done this week.   Which really does put things into perspective for this post.  Our family has had its own tough ride over the past three months. It has felt on occasion like every time we've taken a couple of steps forward, we'd encounter a setback. Fortunately however, things seem to have settled down and we're having a good run of things going to plan... I've probably just jinxed us now! Since opening up on social media we've received quite a few comments, both publicly and privately, about how we're managing to stay positive, so I thought I'd use this post to talk a little bit more about that.  Rory's Smiles For starters, just look at his little face! It's reall...

Disclaimer One:  I should start this and every post with a disclaimer that any of the medical facts I discuss are mine and Pete's interpretation of what we've been told by doctors and nurses. They may not necessarily be 100% accurate as we have been overwhelmed with information, but are our best attempts at understanding the extensive details of Rory's illness and recovery. Disclaimer Two:  This post contains some upsetting photos that up to now we haven't shared. Please be prepared to see some graphic images of Rory's leg injury.  Development of the Extravasation Wound In my last post I described how the Extravasation injury was caused (a leak from an IO line), and how we originally expected the long term damage to be some discolouration or scarring.  During Rory's stay on NSU he received regular visits from the Burns Nurses who came to redress his leg (as the skin was being handled in a similar way to an extreme burn), as well as the Plastic Surgery Team who w...