Pox, Plague and Purple Legs

HAPPY NEW YEAR FROM THE RILEYS!!!

We hope you had the most magical of times. We did. We had one of the loveliest Christmas’s I think we’ve ever had. It was full to the brim with smiles, laughter, family, some questionable knock off Amaretto and lot’s and lot’s of love. Before you all start being sick in your mouths from my Clinton-Card worthy gushing, it was also full of pox.

Of course it was. It’s us. Of course there was a dramatic twist thrown in for good measure.

Pox of the ‘chicken’ variety to be specific. Little germ-spreader Squidge decided to bring that delightful gift home from Nursery with him. He also kindly gave it to his best friend… sorry Flynn. Although, both are now happily ‘comparing pox’ as only 3 year olds can do in these situations.

Pox aside, it truly was a great Christmas.

In other news, I have been rubbish at updating this blog. A common theme, and something I intend to rectify! Tis a ‘New Years Resolution’ – and far more likely to be achieved than ‘losing a stone’, particularly as I write this with a bowl of Frazzles next to me… (and now you are also thinking about Frazzles… the bacon bites of happiness, albeit mine are the somewhat cheaper Asda version)

Since we last spoke, we have been on holiday, which was fabulous. We stayed in a village just outside of Benidorm, which was highly accessible. For the first time, T was able to wheel right on to the beach, which he loved.

The disabled access to the beach was really fantastic. We were able to park his chair up, and then T was able to get onto the beach and sit in the surf… oh, and be buried by Squidge. But that’s what big brothers are for really, to be buried in the sand and whacked repeatedly with a spade.

Beaches are one of the many things I completely took for granted before T’s illness. Sand and wheelchairs do not mix! I am always incredibly grateful for accessible seasides. They are rather few and far between, but when you find one it’s like hitting the jackpot! Although, I’m sure T would argue that the beach in Spain may be more desirable than the beach in Bridlington.

T is now in Year 9 at school which, quite frankly, I’m completely in denial about. The hormones, Scooby Do voice cracks and the overwhelming smell of Lynx Africa however, has confirmed that this is accurate.

T also decided that he wanted to end his swimming lessons. Completely understandable as T is 13 and about 7 years older than the other children who are in the classes, but it was a sad day all round when this came to an end. I have written about Sportsability Swim School before, but they truly are incredible. They made the impossible, possible. T is now able to swim completely independently. Something we didn’t think he would ever manage. They never doubted it for a second though. The day he swam his first length unaided will always stand out as one of my happiest moments in recent years. ‘Thank you’ doesn’t seem enough to cover the support that Claire, Suzanne, Jo and the rest of the team have shown not only T, but our entire family over the years. They are a very special group of people.

You may remember from a previous blog that we had decided to find out if Squidge also has Friedreichs Ataxia like T. 2022 saw us start to walk down this path. I remember at the time that a very lovely lady, a fellow ataxia parent, contacted me to discuss her experiences with the same process. In the end, their family decided that they didn’t want to find out the answer, as this news is irreversible. After much discussion, and after lengthy talks with a genetic doctor, we have also decided the same. At present, Squidge is not presenting any FA symptoms. He runs, jumps, climbs, regularly gives us heart attacks by having zero fear, plays and is entirely comparable to his peers. His heart is functioning normally, with no sign of Hypertrophic Cardiomyopathy (something we did check), and even if he does hit the wrong side of the ‘1 in 4’ odds, FA might not present until he is in his 40’s. And so, we have decided to proceed in blissful ignorance for now. We are trying not to wrap him in cotton wool (something J’s blood pressure does not enjoy), and we are just going to see what happens. Things happen for a reason. What will be will be. And in the mean time, we’ll just let him do his thing. And bulk buy the wine to calm our nerves.

Health wise for T, he’s had a rough few months. His spinal curvature is now incredibly pronounced and is causing him some discomfort (probably far more than he lets on). After discussions with Dr Em (T’s Godmother and private Dietician – who is actually qualified as a dietician, this is not a made up job title), she confirmed that this may also be causing some constriction to T’s stomach, which would account for his low appetite and why he feels full so quickly. Of late, it’s been harder to get T to eat than to maintain a Prime Minister in the UK. And that’s saying something. This was the cause of much frustration for T, and for us. We now have a bit of a plan about how we can get a few extra calories into him to try to maintain his muscle mass. J is very smug as this was his idea, which has now been ‘medically approved’ by Dr Em. He’s going to be a nightmare to live with after this.

In addition to the low appetite, T’s circulation also seems to have gone a bit wonky. One night, not long before Christmas, J shouted me through as T’s legs had turned purple. We are talking Quality Street Purple One ‘purple’. From the knee down, his legs were like two anorexic aubergines. Not only that, they were ice cold to touch. Not just a bit chilly (I myself am known for my lizard feet), but ice ice baby. Frozen aubergines. The colour alone was enough to have me phoning every medical professional I could think of. His legs did not return to normal until the next morning when he woke up, having been laid flat. We are wondering if the scoliosis may be pressing on a vein or a blood vessel, which reduces circulation when he’s sat up all day. The GP has requested immediate investigation from all specialists (as it could also be his heart or his FA), which has resulted so far in 1 appointment coming through. Which was then subsequently cancelled, and booked in for 3 months later. Joy. In the meantime he’s wearing thermal everything to try to make him as warm as possible.

In positive news, the gaping hole in the wall is no more! Hurrah! It is now, in fact, a door! And T now has his downstairs room and bathroom. He absolutely loves it. It has literally changed his life, which is amazing. We now however barely see him as he wants to be in there all the time. He pops up on special occasions, and periodically when we drag him from his cave to (heaven forbid) socialise with his family, but it’s so fantastic to see him comfortable and happy in there. We owe a massive ‘thank you’ to Coburn Construction for making our home work for everyone in our family.

In less positive news, you may remember that in my last post I wrote about our battles with Social Care to get T some PA support to increase his independence. This was a recommendation from T’s therapist. T has now been classified as a ‘Child In Need’ since the summer, and we have undertaken a full social care assessment to enable T to receive the help he needs. Part of this includes 4 weekly visits to the family home where Clive (not his real name), our Social Worker, has to make sure T is still alive. Numerous meetings with various professionals, and endless hours of questions and interviews about our family. I don’t even want to try to calculate the amount of time this has taken all together.

Today they have denied T any kind of support.

To say I am angry and upset is the understatement of the century. Their justification for this is that T can “attend social clubs like other teenagers”. Fortunately for many “other teenagers”, they do not have 3 life limiting illnesses and can access “social clubs” in a far easier way. The application was for a few hours of PA support each week. That’s it. Not thousands of pounds. Not a holiday in the Bahamas. Just a couple of hours. All we wanted was the opportunity for T to get out and socialise, in a safe way, without the drag of him having to have his parents take him everywhere. So he could be like his friends. Apparently, this is not a good enough reason.

Absolute bunch of bastards. I wish them all well. And potentially a nasty bout of thrush.

So that’s where we are at. The good, the bad and the ugly. Tonight I am angry and sad. Oh, and I have the plague. Not the bubonic kind, thankfully. But I came home from work yesterday and my face has erupted into hives. Dr said I could potentially be allergic to said work, but can provide no other explanation except that I’m ‘not contagious’. So me and my plaguey face are off for some more Frazzles, potentially an angry cry, and most definitely a cuddle.

2023, sort your shit out.

All the love,

L and the Rileys

xxxx