Holy moly I’ve been slacking on the updates recently! I was convinced that my last post was in May… turns out it was in February and that is not the same as May…
So, strap yourselves in for a catch up of epic proportions!
Firstly, WE GOT ON A PLANE AND WENT ON HOLIDAY. For one whole week I hid my pale ass skin in whatever patch of shade I could find, lathered on 4 layers of factor 50, and RELAXED. I’ll be honest, I don’t think we’ve ever needed a holiday so badly. We jetted off to ‘Fancy Botty’ (Lanzarote, but Squidge’s name for it was much better… he also calls Squirrels ‘Sussells’, which is a keeper), and spent the week eating, drinking, swimming and exploring. My lovely in-laws arranged it and we had a villa which was perfect for our needs as a family. Aside from one bedroom, the rest of the building was single story and T was able to manoeuvre around easily and happily! He even ended up with his own en-suite, not that this stopped the daily debate of:
Me or J: You need to get a shower.
Me or J: Erm, because you are a teenager with raging hormones and the potential to wear B.O like a waft of ‘Cool Water’ if you don’t shower every day?!
T: >insert incoherent grumbling and device slamming<
What is it with teenagers and their lack of wanting to be clean?! Why is it such an inconvenience? In addition to this, why is there such a lack of appreciation for clean bedsheets? I seriously cannot think of many things greater in life than sliding into fresh sheets, post shower and hair wash. Teenagers though? Happy to fester in their own grime. MANK.
Anywho, I transgress. The holiday was fab. T in particular seemed to recharge his batteries, relocate his appetite and embrace the sunshine. Happy Riley times.
Following the holiday T turned 13, so he is now an actual real life teenager.
His voice is breaking (he currently sounds like Scooby Do, which we enjoy drawing attention to) and we are trying to take a few steps towards encouraging him to be more independent. Over recent months he has been venturing out with his friends a bit and taking some jaunts down to the local retail park. They like to go to Maccys, walk around Sports Direct and then hit up ‘One Below’ for some bargains before heading back. The retail park is about 15 minutes walk from our house, and Joe (T’s friend who is ace and also lives next door), wheels him there and back when they go. I do think he may have regretted this one day though when it was about 27 degrees. He looked like he’d ran a marathon in a snowsuit by the time they got home. T is very lucky to have some wonderful friends around him, like Joe.
What has also been nice to see, is that T always seems to come back with gifts for Squidge, rather than buying things for himself. I try to remember this lovely bond when they are ‘fighting’ (aka Squidge jumping all over T, and T winding him up)… brothers eh?
In exciting news, we FINALLY have had an appointment with an actual Ataxia specialist! We ventured over to Sheffield to attend the ataxia clinic and it was a really wonderful day, for many reasons.
The doctor we saw is one of the leading Ataxia specialists in the UK. He works closely with Ataxia UK, and is very much ‘on the pulse’ about new treatments and medical trails. Although the neurologist who sees T generally is very nice, he is not a specialist in FA and so we often leave appointments feeling frustrated. This appointment felt proactive and positive. For the first time ever, we were having discussions about improving symptoms, rather than just managing them. T was prescribed a new supplement, which has recently been shown to improve some symptoms of FA. Now it has to be said, nothing will cure T. There is no cure for FA. But, if anything can help to keep him mobile and pain free, we will try it!
The team we saw in Sheffield really seem to have families in mind too. As FA is so rare, there are very few specialists in the UK. The clinics in Sheffield and London house the only ones. Luckily for us, Sheffield isn’t too far away, but the Dr mentioned that for his patients who live further afield (one in Truro!), he schedules video appointments so they don’t have to travel. The staff also arranged for T to have an MRI on the same day, to avoid us having to return on a separate occasion. When you are managing appointments at 3 different hospitals for 3 separate serious medical conditions, little things like this can make a massive difference. T will have an MRI every year now to monitor the cerebral progression of his FA. This could be used to inform treatment decisions, but will also be used for medical research. We are in full support of this, as research such as this may unlock treatments or even a cure in the future. Let’s hope that this can help others.
The MRI in itself was incredible. We went to a different hospital in Sheffield for this (Sheffield Childrens Hospital), and had another overwhelmingly positive experience! T has previously only ever been able to have MRI scans under general anaesthetic, as the tremors and spasms which are part of his condition have made it impossible for him to remain still. This MRI was completed without any anaesthetic, and although it took longer (over an hour and a half), the staff were incredible and managed to get everything they needed. T was able to select a film (Spiderman into the Multiverse for anyone wondering) and he watched it through a cleverly placed mirror. I was also able to be in the room with him… and was also able to watch the film… although I had to watch it upside down, which was somewhat more challenging.
Overall, big gold stars to Sheffield! Roll on next years visit! Although, T stated that the KFC we ate in the car park was the best bit… you can’t win ’em all!
With regards to spinal surgery, T has had another appointment. It is still on the cards. However, the waiting list is over 2 years. For young people like T who suffer with Scoliosis, this waiting period could induce not only a significant deterioration of the spine, but also an increase in pain. Luckily, as it stands, T is relatively pain free currently, however the curvature is progressing at a rate of knots. It is very prominent now, and the muscles in his back are being pushed out of place. As a result, T will be seen again by the spinal surgeon in September to see exactly how quickly things have progressed over a 6 month period, and then a decision will be made as to whether he will go on the general waiting list or be fast tracked. I’m not sure which is the better option to be honest.
T has been much brighter in himself, which has been great to see. J and I however, have been a little up and down in ourselves. Generally, we both try to ‘crack on’, but sometimes things just get a bit overwhelming. I know I certainly have had a few moments where that has been the case over the past few months. Life has been busy, work has been busy, the house has been upside down and full of builders, we have had toddler and teenage tantrums to navigate (there is literally no way to do this except bulk buy wine – for me, not the toddler and/or teenager to be clear) and J and I have also had very little time together as a couple. Throw that on top of our ‘general load’ of appointments and medical revelations and the Jenga pile topples for me. In my ‘pro active, annoyingly positive’ type of way though, I am trying to remedy this. In said shit times, you need to work a little bit harder to pull the positives forward. That is my new plan. Make the effort, put the positive pants on (little reference for you there Denbo) and keep on bloody smiling. Sometimes it’s all you can do.
Anyway, enough wallowing from me. Back to more exciting things. T WON AN AWARD! Honestly, this boy is becoming more decorated than a Showstopper Challenge in the GBBO. He was awarded a special cup from school which is given every year to a student who overcomes adversity to achieve. In unsurprising news, I cried at the ceremony. The staff said such lovely things about him, and his Head of Year looked proud as punch wheeling him onto stage (which made me cry more).
He may do my head in daily, refuse to be clean, communicate only via TikTok and shout at his Playstation as if he is fighting the Hounds of Hell, but we are ridiculously proud of this boy. He never gives up. Even on the dark days, he gets up and just keeps going. He is now a leading member of the Inclusion sports teams at school and has just chosen to do PE and Drama for his GCSE options. PROUD.
The garage conversion is finally underway. Hurrah! I currently have a small ‘mouse hole’ in my hallway which a builder periodically peers through to ensure the floor is level. Fingers crossed that by the end of the summer he will be in there and settled (T, not the builder). The past few months have really seen T struggling to get around the house, so it will make a massive difference to him when he can just wheel about! Although, he nearly took me out today as he has no peripheral vision and, quite frankly, needs some kind of reversing alert.
As a final update, I took the boys for a hair cut today. The hairdresser we saw is utterly terrifying (completely lovely, but terrifying), and more or less just does her own thing. Squidge now looks like an 25 year old.
So, I shall wrap things up there. This one is a bit all over the place, so apologies if you got bored in the middle when I was brain poofing. There is probably more to write, but I’ll save that for another day.
I’ll try and make sure I get my months in the right order moving forward, and not leave it 5 months between posts!
Take care, and keep smiling!
Lucy and the Riley’s