What do you follow – the heart or the head?

Well I am currently sat in the most cross-seasonal outfit ever (autumn dress with summer sandals for anyone interested), and realised that its been quite a while since our last update. So I thought I would remedy that.

We’ve had a relatively quiet summer holidays so far – the impending arrival of mini Riley (who is LATE, and clearly far too comfortable in the ‘luxury spa’ that is my uterus), has limited us somewhat in terms of what we can do and where we can go. Namely because I currently resemble a large walrus and daren’t drive my car in case my waters break and I cause a catastrophic accident. J has been awesome at looking after us all; and T, in true T style, has been an absolute DREAM. He’s happy to chill at home, snuggle up, watch movies… and play Fortnite. Which apparently is one day going to make him a millionaire and enable him to buy a large mansion and a Lamborghini. The Lamborghini in question, has been inspired by some random Korean YouTuber who has just purchased one FOR HER DOG. Here I am, buying ‘wide fit sandals’ in Primark for my swollen cankles, and some pooch has its own private Lamborghini.

2019: Boris Johnson, Donald Trump, dogs with Lamborghinis.

Anyway, back to T. In terms of his health, things are a bit up and down. We recently saw his Cardiologist from Leeds who performed another scan of his heart and an ECG. T absolutely LOVES an ECG. I have no idea why, he just does. He likes to help the nurses attach the stickers, and then track the results as they come through. As a result, the nurses absolutely love T too – they have actually started giving him gifts when he comes to appointments. I think he reckons he is some kind of Cardiology celebrity. He’s definitely more deserved of celebrity status than Gemma Collins, if you ask me.

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But back to the appointment. The thickening of T’s heart has remained the same, which is great. However, lovely Cardiologist lady is very surprised that we have not seen any more symptoms present themselves in T’s day to day life. His energy levels continue to decrease, but, it would have been expected by this stage for there to have been some instances of passing out, or further heart arrhythmia’s. Great that it hasn’t happened yet, but definitely one to watch. And something she seems a little perturbed by.

She asked what activities T did and I explained about his swimming lessons, PE at school and how we try to keep him as active as possible. Her initial reaction to this was to request that we stop his swimming and further restrict physical activity. Now, this is problematic for a number of reasons:

  1. T loves swimming and playing with his friends. He does struggle now much much more in terms of energy and stamina, but he genuinely loves it.
  2. The Neurology and OT/Physio team have always encouraged us to keep T as active as possible, to help to maintain muscle strength, and ultimately, his independence.

So who do we listen to? The heart or the head? – I’m not gonna lie, I feel as lost in this situation as Theresa May trying to sort out Brexit.

After much to-ing and fro-ing with lovely Cardiologist, we eventually agreed that he could continue to swim/play sports etc as long as we, and his instructors, were extra vigilant. I have no concerns at all there. His swimming teachers are awesome in terms of dealing with his conditions, and his teachers at school are equally as fab.

It has, however, made the summer holidays additionally challenging. We have really really struggled to think of things to do and places to go which meet T’s needs. Taking him to the park now feels more cruel than joyful, as he can no longer access any of the equipment. Trampoline parks/activity days are a complete no-no, and we have exhausted many of the local haunts/museums which are accessible. Still, we have managed to squeeze a few things in which he has enjoyed: mini-golf (only 9 holes, and bless him the sweat was pouring off him after that, BUT he loved it), bowling, swimming, cinema and a lovely relaxing family holiday to Helmsley for some much needed R&R. Oh, and some indoor laser tag – which I was hoping would not only entertain T, but also kick start mini Riley into making an appearance… Alas, no.

We are also trying to take a walk each day. T pushes his wheelchair as far as he can, and then I take over and push him when he feels like he needs a rest. If he can’t manage the walking, I will encourage him to self propel himself as much as possible. We have a little route which we follow (it sometimes leads to hot chocolate), and we set goals along the way. It might be to walk the full length of the ‘wiggly path’, or on bad days, just to make it to the top of the street before jumping into the Mean Machine. Its so difficult to tell though, whether his waning energy is because he’s not doing as much activity so his fitness levels have dropped, or if its due to his Cardiomyopathy. So then you are stuck in terms of pushing and challenging him. We don’t want him to give up, but at the same time we also don’t want to cause him additional harm by pushing him too far.

So we shall continue onwards! There’s nothing else we can do really, except continue to muddle our way through this medical minefield. What has been lovely, is spending so much time with T, and HOPEFULLY mini Riley won’t keep us waiting much longer as T is also ridiculously excited about being a big brother. Please all send speedy baby thoughts, and also any ideas for activities for our little dude. Suggestions are more than welcomed!

Now, I’m off to put my fat cankles up for a bit and walrus out on the sofa.

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Happy Thursday! Love, The Rileys x

 

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