A Little More Ebb, A Little Less Flow

I didn't expect to be writing another blog post so soon after my previous, but we've just had a really detailed chat with Mr F about Rory's short term surgical plans, and I wanted to get this information written down before I forget the details. 

As we learnt a few weeks ago, Rory is due more surgery to correct the angle of his limb. 

After further discussion, we've learned the gritty details of that op; Mr F is going to cut Rory's bone in two places, realign, then hold them together with a pin. He will also remove the pin that's already in there. The new pin will stay in place for 12-18 months in theory, however Rory is a bit of a one off, so it might be ready to come out in 6 months, we won't know. Plenty of clinic appointments to keep an eye on things will be the norm over the next year. 

We're looking at scheduling the operation for early June which allows both us and Mr F to get our May holidays out of the way - I do not want him wheelchair-bound for Disney; Pete and I have both put our foot down in that respect. If we can give him a week of absolute freedom with all of the joy that comes with that then we will. It's where dreams comes true, right? We're glad that Mr F is happy to accommodate our wishes in that respect; to give Rory the best week before we take away his aid again.

SCH took x-rays this week (Rory was super brave and got a sticker so that was his day made) and will likely take further x-rays while he's in theatre. As well as checking up on the bone in Rory's stump, they also x-rayed Rory's other leg. Mr F is going to calculate the growth rate in Rory's left thigh (his good leg) in order to determine it's eventual length. Whatever he calculates that end length to be, he will deduct 10cm and that resulting measurement will be the target length for Rory's stump. For example (using random numbers), if Mr F worked out that Rory's left thigh would reach 40cm by the time he was 16 years old, then Mr F's plan is to control Rory's stump so that it never grows beyond 30cm. This will ensure that he can live his life with an above-knee prosthetic with a joint. Having a knee joint will make his future mobility a hell of a lot easier.

There are two ways that Mr F will hit that sweet spot measurement; 

1) Firstly, he can control it with the growth plate. Although Rory's knee, thigh and growth plate were significantly damaged from the extravasation and subsequently removed from his body, some of the growth plate remains, and that is what is giving him partial growth in his leg (albeit nowhere near the normal growth that his good leg is showing). Mr F can sit back and wait for Rory's limb to hit that target length, and then surgically remove the remnants of that growth plate, effectively stopping any further growth. 

2) Because of the poor condition of Rory's growth plate and its limited blood supply, there is a chance that the growth plate could just die off on its own. This is another reason why we will be continuing to x-ray Rory's stump several times a year to see if there is still growth happening. 

He's proud of his x-ray Theo sticker

I try and keep this blog, and indeed life in general, as positive as possible. We always look on the bright side, focus on how lucky we are, and celebrate Rory's achievements regularly. Pete and I are very good at keeping each other in that happy place and we don't often dwell on the downsides. But at the moment I feel mentally drained. I think it has been bubbling under the surface for a few weeks, but the influx of information from Mr F at this latest consultation has just tipped me over the edge. I fully accept what needs to happen and concur that we should make haste and get this procedure done while Rory is as young as possible. But I'm tired of acting like I'm ok with everything and pretending that it doesn't make me really, incredibly sad that he has to go through all this. He's two years old, he shouldn't be on first name terms with the ward nurses, it shouldn't be normal for him to ask if we're going to hospital today. He doesn't deserve this. It's not ok.

It's also really frustrating that he has been without a prosthetic for over 7 weeks now, and still has a couple of weeks to go before his next fitting, let alone collection. He crawls easily, but it's not the same as walking and it pains me to see him held back. Knowing that we'll have this same agonising wait in the summer too just makes me feel so deflated, and I think it's this sudden look ahead to June when we're not even out of this particular hole is what has caused this slump; I just want it to all stop now.

I know it will all be fine, thank goodness Rory is none the wiser, and I'll probably feel better in a few weeks when we get his new prosthetic and he's back on his feet. This ebbing and flowing of emotion seems to be par for the course when it comes to parenthood in general; I know we certainly aren't alone in that respect. I'm lucky to be on this journey with Pete, who is just amazing at lifting me up when I need it (typically with a well timed bar of choc). But now, I'll tuck Rory into bed and pour a glass of wine!