Always together, never alone.

Evening all! I thought it was about time I wrote a bit of an update on how things are, and more specifically, how things are medically for T at the moment.

It’s been a funny old time, trying to navigate serious medical conditions, when no-one wants to see you for appointments. And, to be fair, we didn’t particularly want to venture away from our safe haven of home.

Over lockdown we relied heavily on phone consultations, which are all well and good, until you try to explain how your 11 year old keeps spontaneously vomiting because he has “a funny feeling in his throat, like something is stuck” (T.Riley – 2020), and they can’t examine him; but instead ask you to record him eating in secret and send via WhatsApp…

Now this sounds like an easy task, but trying to technically stalk a highly astute and tech savvy 11 year old is actually quite a challenge!

Make sure he’s eating naturally…

That was the instruction I was given. So, ‘Stealth Mode’ activated. To achieve my mission I adopted the tact of:

  • Fortnite related questioning (I still don’t get that bloody game, FYI)
  • T’s favourite lunch (picky buffet, for anyone interested)
  • A carefully placed satsuma…

20 minute ‘natural eating’ video successfully captured! Steven Spielberg eat your bloody heart out. I was tempted to edit it and add some special effects, but decided against it in the end.

Anyway, to cut a VERY long story short, we still don’t know why he’s spontaneously vomming… joy. We’re being referred back to the person who referred us to someone else in the first place… so this is clearly going to end well…. ahem.

The impending threat of Covid still hangs over us. Mini Riley had symptoms a few weeks ago, so poor T spent about 2 days confined to his room in an attempt to keep the germs away from him. Luckily, Baby R tested negative (performing a Covid test on baby is the equivalent of wrestling an eel, wriggly and highly unpleasant for all involved); and then BOOM, a positive case in T’s class at school. So then it was 2 weeks of home schooling and self isolation.

In true T style, he was a total legend. Worked like a trooper through his school work and enjoyed the accompanying supply of biscuits to motivate him…

No symptoms, thank goodness.

Just as he was about to go back to school, we received some interesting post in the form of a mini heart monitor. Now T usually has to go to the hospital to have these fitted, and he wears a monitor for 48 hours to check the functionality of his heart incase his Hypertrophic Cardiomyopathy has got worse, and requires further investigation. Marvin (the Monitor) is somewhat cumbersome, however his small cousin Melvin (the Micro Monitor) was an absolute dream!

Teej and Melvin (the Micro Monitor)

It was so much easier for T to be able to go about his normal business with old Melv. There were no wires, and it was incredibly small and light. We will always have a soft spot for OG Marvin, but Melvin is the future! After 48 hours, it was straight back in the post: bish bash BOSH. Results have also come back showing pretty normal functionality too, so a positive experience all around!

In wheely related news, we are at war again. This time, with wheelchair services. Now, T has a manual wheelchair which he rolls about in quite merrily, however this chair is HEAVY. As a result, he can’t wheel himself for very long without someone needing to take over and push him. In the summer we did a workshop with a charity called ‘Go Kids Go’, which was AWESOME. I even got a chair of my own. They focus on wheelchair skills to help users maintain independence and safety. They covered everything from crossing roads and negotiating curbs, to being able to land safely if you tumble out of your chair. I would wholeheartedly recommend them to anyone who is a wheelchair user. Now, believe it or not, they actually encourage wheelies. Which actively encouraged my blood pressure to rise significantly when T starting hurling himself backwards. However, this is a vital skill in terms of being able to cross the road to get up and down the curbs (makes sense I guess, when you think about it). T managed this easily in the sporty chair they let him borrow, but really struggled in his own chair as it weighs roughly the same amount as a baby whale. The charity suggested requesting a lighter framed chair for T, so he could maintain more independence, be less reliant on other people pushing him, and be able to wheelie without needing the muscles of Arnold Schwarzenegger … so that’s what we did. However, wheelchair services will not fully fund a lighter framed chair as T is not a full time user. What they seem unable to understand is that by providing him with a lighter framed chair, it will ultimately enable him to maintain his mobility for longer as he will use less energy pushing himself, meaning that he will have more energy to walk. Apparently this is not a good enough reason however, and they want to charge us £1000. T’s lovely OT is on the case though, so I will report back on our battle with that one! Sometimes, it genuinely feels like a pigeon is in charge of these services.

T had his first visit to hospital in a while this week. It was to see his Orthopaedic specialist about his curvy spine. You may remember that his last visit resulted in a bombshell being dropped on us about the prospect of spinal surgery in the near future. As the appointment crept closer, T was getting quieter and quieter. On Wednesday morning (appointment day), he started sobbing into his Weetabix…

“I’m so scared I’m going to need surgery Mum. Back surgery is really bad isn’t it?”

He was completely inconsolable. Truth be told, so was I. How on earth do you explain to your broken son, that you are every bit as terrified as he is that they may need to operate on his spine?! Well, the fact is, you don’t. You paint a smile on and tell him that it will be ok. Because, quite simply, what else can you do?

“What will be, will be, T. If you need it, it will be for a positive reason, to help you to feel better. And you won’t be going through this alone, we’re all in this together”

“Always together, never alone. That’s us isn’t it Mum?”

“Yep. That’s us T: Always together, never alone.”

At this point, Baby Wrecking Ball Riley, decided that enough was enough, and that it was about time he was the centre of attention again, so threw a banana at my head. It was a beautiful moment.

The appointment we had was at 4.45pm that night. I shot home after school to meet T off the wheelchair bus to take him. He was under strict instructions to BE READY AS SOON AS I’M HOME AS WE DON’T HAVE LONG TO GET TO THE HOSPITAL.

So, of course, this was the perfect time for him to develop constipation and lock himself in the downstairs toilet for 20 minutes.

Me: T, we need to go…

T: Won’t be a minute

*10 minutes later*

I was now tapping my foot…

Me: T, we REALLY need to go….

T: 5 minutes!

Me: WE DON’T HAVE 5 MINUTES!!!

….*5 MINUTES LATER*

I was now alternating between foot tapping, pacing, banging my keys and muttering incoherently to my father in law.

Me: T!!!!!!!

T: It’s stuck.

Me: What do you mean ‘it’s stuck’?!

T: It’s stuck!

Me: Well it will have to stay stuck.

We eventually made it to the appointment with seconds to spare.

They x-rayed his pelvis and his spine, and we saw the specialist who informed us that…

HIS SPINE HAS IMPROVED!!!!!!!

At his previous visit it had measured ’32’ (I’m unsure what exactly that means, 32 squirrels? 32 tic tacs?), but this time it was 25! Surgery doesn’t need to be on the table until it measures at least ’40’. The smile on T’s face was worth it’s weight in gold.

It’s been such a crappy year this year, it’s nice to be able to celebrate some nice news. And celebrate we shall! Together. Always.

Always together, never alone.

We hope that you have some nice news to celebrate too.

All our love,

The Rileys

x

One thought on “Always together, never alone.

  1. A merry Christmas to you all. Fantastic news about T’s spine improving and the heart monitor.
    If the chief wheelchair pigeon won’t issue a lighter wheelchair then they are idiots! Do keep us updated, and if you don’t get any joy then set up a giving page. I’d love to see T whizzing and pulling fat wheelies! We’d love to contribute
    Tracy, Paul, Morgan & Scarlett aka Arsacs Ataxia Princess xxxx

    Liked by 1 person

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