Strap yourselves in Ladies and Gents, this is gonna be a long one! Over 2 months since our last update. I didn't actually realise that much time had passed... but 'time' seems to have taken on new meaning since Covid hit. One minute I'm in lockdown eating Easter eggs, then I blinked, and now its … Continue reading The start of a new road… not to Debenhams.
Tag: friedreichsataxia
Carol Vorderman is my hero, but a fall can derail your day.
We sacked off home schooling today. Sorry to T’s teachers who will read this 😬 The day started well. Bit of Maths Factor (thank you Carol Vorderman you absolute Goddess and maths legend) and T completed a new topic. But, he then stood up and had a nasty fall in his room... which resulted in … Continue reading Carol Vorderman is my hero, but a fall can derail your day.
It is what it is.
HAPPY NEW YEAR! - I'm aware that we are very late to the party here, but it feels like we haven't stopped these past few months. Happy Christmas too! Totally didn't realise it had been so long since our last update... heres a festive picture to make up for our lack of content! Hope everyone … Continue reading It is what it is.
Disordered Not Drunk
Happy September 25th! Today is International Ataxia Awareness Day - aka the PERFECT day for a new blog post! As you will remember, if you read my previous blog post, I - the Walrus - was waiting for the impending (LATE) arrival of Baby Riley. And, if you follow our social media pages on Facebook … Continue reading Disordered Not Drunk
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 … Continue reading What do you follow – the heart or the head?
A wheelie emotional farewell…
Well. This week has been one of high emotion for young Mr T. On Monday we went for a wheelchair review, as the old Mean Machine is now almost contorting his newly elongated frame (seriously, he looks like Mr Fantastic from the Fantastic 4 nowadays - he's SO TALL). He has a slight curvature of … Continue reading A wheelie emotional farewell…
Hopes, dreams and wheelies.
This week I had a meeting at T's school to review his school support plan. It was quite a large meeting: myself, Miss E - the lovely school SENCO, an Assistant SENCO (who was equally lovely but I have forgotten her name... if you are reading this I apologise. You really are wonderful, but I … Continue reading Hopes, dreams and wheelies.
No wishes needed… and toilets in jail.
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 … Continue reading No wishes needed… and toilets in jail.
You have one, so you may as well be one… The story of a Lamborghini, a big heart and an ‘Emotional Firing Line’.
Well, the past few weeks have definitely been busy ones. We took our first trip to Leeds for T to have his 'Detailed Heart Scan'... and detailed it was! We were in with the very nice Sonographer for nearly an hour, and he was able to use an advanced machine to look in detail at … Continue reading You have one, so you may as well be one… The story of a Lamborghini, a big heart and an ‘Emotional Firing Line’.
There aren’t enough words.
The most common thing J and I are asked, is how we cope with everything that is happening to T. The truth of the matter is, that we don't. Not really. In a few weeks time, it will mark a year since we received T's initial diagnosis of Friedreichs Ataxia; and looking back, it really … Continue reading There aren’t enough words.
