Well, we’ve had a relatively quiet few weeks in Riley Land in terms of appointments and specialists. We are currently in that lovely place named ‘Limbo’. We are still awaiting the results of T’s detailed heart scan and still also awaiting his appointment to come through for the Ataxia clinic at Great Ormond Street.
In the mean time, T has been doing well in terms of adapting to an increased use of his wheelchair. His energy levels are definitely starting to wane more now, whether that is due to his Cardiomyopathy or the Ataxia we don’t know; but any kind of physical activity takes it out of him. He is currently participating in swimming lessons with school, which is having a very mixed outcome. One Friday a few weeks ago, he didn’t even have the strength or energy to dress himself after the swim lesson and instead tottered out to his TA in just his socks to ask for help. Not sure she was quite expecting that to be honest. Not sure the rest of Beverley Baths was either.
We are slowly making adaptations to the house to try to help T remain as independent as possible in his day to day life. The latest addition to our home furnishings, is a delightful toilet frame.
It means that T can stand with a bit more confidence; and hopefully be able to have a bit more ‘winky control’, as I swear that thing has a life of its own. My Mags-In-Law was speaking to him about it the other day…
M: “Do you like the frame T?”
T: “I just feel bad for the toilet, because its been put in jail.”
Honestly, this kid.
We also had a visit this week from T’s amazing OT and her colleague from Social Services to look at further adaptations to the house. At the moment, we all feel T is coping well with the house as it is. We have bathroom aids and the additional rail and gate on the stairs which helps LOADS. Eventually we know that we will have to think about moving T downstairs, however we are definitely NOT at that stage yet. Our long term plan is to *hopefully* convert the garage into a living space for him with a wet room and a sleeping area. Its important to us that our house still feels like a home, not a hospital. Our home is our constant as a family. Our safe place, where we can laugh, cry and love. One of the only things we can actually have control over. I realised this week just how important this is to me, and how ridiculously freaked out I get when things change… J discovered this on Monday when he rearranged some of the kitchen cupboards. I came home from work, went to get a cup out for T and instead pulled out some marrowfat peas. I then proceeded to rain down a serious amount of ‘wife strife’ on him for daring to change something in the house we share, and then grieve for my cupboards of days gone by… not my finest hour I admit.
And what is young T doing, while his mother turns into a lunatic? He’s being awesome. Lovely M the OT discussed some further aids which could be used in school to help T on a day to day basis. As a result, he will be the proud recipient of a WOMBAT.
Alas, tis not the furry kind. If it were, I would have named him Walter. But it is, in fact, a special chair T can use in class to support his muscles and help with his posture…
He was most impressed by the fact that it can shoot up and down via hydraulic power. I mean, whats not to love??
He will also be getting a ‘K-Walker’. Something he was less excited about.
I mean, to be fair, it bares more than a striking resemblance to a zimmer frame. Who wants a zimmer frame age 9?! However, he’s agreed to try it. He just seems to take everything in his stride. Every change, every challenge, every bad day. He just smiles and gets on with it.
He was doing some work with his lovely TA today about wishes and dreams. She asked him what he would wish for if he had 3 wishes…
“Oh I can’t do that Mrs B! I couldn’t wish for more. I’m happy and excited about my life. My life is great already.”
He always sees the sunshine, even on the darkest days.
Now I’m going to leave you with a picture of my dude being a unicorn – a Teejicorn, if you will. I’m off to smile at my new cupboard arrangement and feel grateful for my amazing boy – the strongest, and most positive person I know.