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.
Tag: friedreichsataxia
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’.
