It's A Never-Ending Story!

It has been over six weeks since Rory's surgery, and he's healed amazingly as always.

A week after his op we took him back to Sheffield for a dressing change, and following then Pete and I did the weekly dressing changes ourselves at home, with bandages/supplies provided by Sheffield. We sent them photos and they called back to give a thumbs up. No need to take him all the way back to Sheffield when his wound was looking good and we're pretty experienced in this task anyway.

First dressing change compared to last

Now that the bandages are off, you can really see the incredible results from Miss T's reconstruction work.

Below, on the left, is a photo from a year ago where you can see how the patch of skin graft isn't growing and is therefore pulling tightly at the surrounding tissue and causing it to crease. The skin graft was also 'tethering' to his bone due to lack of fatty tissue, which was causing his bone to bend. Stage 1 of this operation happened in May last year, and stage 2 is what we've just completed. The second photo below shows Rory leg as of today. You can see that there's now a nice chunk of tissue all the way around his upper limb, which will support any growth in his leg as well as making it nice and smooth. I've no idea how Miss T and her team have managed to mould him like a piece of play dough, but it's worked and will make fitting a prosthetic so much simpler for him going forwards. Clearly, it looks very different to a normal leg, or even the leg of a typical amputee. The complexities of Rory's case are incredibly rare and have made his consequential reconstruction borderline experimental.

Left: photo before reconstructive surgeries.

Right: photo from today, two surgeries later

His leg will always look something a bit like this; possibly a little longer and a little thicker but that's about it. It will still be a bit lop sided, a bit funny looking, and far too thin to be mistaken for an upper thigh - you only have to look down at your own lower leg to see that it's half the size of your thigh. We always knew it would be the case that our challenges would eventually turn from that of a medical nature to a social one, if that's the right terminology; protecting Rory's self confidence as he paves his way through a society that is still working towards accepting 'difference'.

Once his wound had healed and the stitches had all fallen out, we were able to take him to Blatchford to be fitted for his next prosthetic. I was working, so Pete took Rory on his own. We have become less precious about both being there for every single appointment now because quite frankly there are far too many of them, and most of the time they are just check ups where we aren't learning anything new. As a result we try and avoid taking holiday days from work, and instead saving those days for valuable family time or for more important medical appointments/prosthetic collections. However! On this occasion, what was supposed to be a straightforward casting session (Rory's leg wrapped up in cling film, wound in plaster of paris to make a mould, then measured, cleaned and off you go) turned out to be an ambush! Our orthopaedic surgeon Mr F was there, along with a few physios as well as his prosthetist. They sat Pete down in an appointment room and began talking about next steps for surgery... !

Here we go again. Just when we thought we were done with surgery for a few years.

Mr F was really pleased with the metal pin he placed in Rory's leg last year, and was satisfied that it has successfully helped bring his leg in from its previous position of being stuck out to the side slightly. He explained that Rory's leg was sticking out in front a little more than it should be doing (which he observed last year, but wanted to correct the sideways bend first) - if you stand up, 'lock' your knee and raise your ankle in front of you a few inches off the floor, that's somewhat similar to what Rory's leg is doing. It isn't hugely noticeable, but Mr F wants to make sure things are right now to avoid him needing surgery when he's older. The plan is as follows:

- Take X rays, to measure the bone and compare to previous X rays

- Mr F will use the measurements (and the subsequent difference between the two sets) to calculate the rate of growth, and use that to determine how long Rory's limb will be when he's 16 years old

- Using that information, Mr F will then operate: he'll remove the existing pin that has corrected the sideways bend, he'll insert a new pin in order to correct the forward bend, and he may or may not shave off some length in order to ensure that Rory's 16 year old limb will be a workable length, i.e. short enough that he will be able to use a prosthetic with a knee joint, which is our ultimate hope to give him a proper gait as opposed to a limp that having a straight leg would cause.

I'm not 100% sure how Mr F will shave the bone down, as I think Pete was too surprised by the sudden information intake so of course we'd prepared no questions. This is the sort of conversation that normally I'd have been part of too. We have a further appointment with Mr F at Sheffield in a couple of weeks to get started on the X rays, so we'll have the opportunity to ask lots more questions there. In the past when we've discussed this with Mr F he's suggested that length could be removed from midway down the limb rather than just snipping it off the bottom. We'll need to check if that's still the case, because Rory is excellent at weight bearing on the end of his stump due to it originally being his heel bone, and therefore uses it to climb exceedingly well, so I hope we won't lose any of that ability.

They still proceeded with the prosthetic fitting, and we have a new pattern planned to match a special holiday we have booked for the start of the summer... And then when we come back from that holiday we'll get down to business and book in for surgery #16. Of course, we could have cancelled the prosthetic fitting and jumped straight into surgery immediately but I'm extremely conscious of all this lost walking time. Since early January Rory hasn't been able to wear his prosthetic so he's continuing to be held back in that aspect of physical development. I want to give him some time to walk, to run, to be free, and have a bit of normality with his nursery friends. Even if it's just for a couple of months before we mess with his leg again and he's back in that limbo of healing/measuring/waiting for a new prosthetic.

More updates surely to follow in the coming weeks!

On a non medical note, we've just taken the sides off Rory's cot bed and he suddenly feels very grown up! I keep looking back at old photos of him and wondering where my little baby boy went?! I adore the little person he's becoming and his personality - he makes us laugh every day with the ridiculous things he comes out with and his daft facial expressions. But I wish time would slow down a bit - I miss my little newborn. Two of my friends are expecting so I've been getting Rory's old bits out of the loft and snuggling those tiny vests while tearfully scrolling through old photos and videos! The never-ending agony of parenthood.