Happy Saturday one and all! Isn't it nice to see the sun shining again? It certainly makes everything seem a bit brighter. Although, it is 100% that time of year now when whatever outfit you choose to wear is wrong and you either end up mafting or freezing - there is no middle ground. T … Continue reading Setting the date.
Tag: hypertrophiccardiomyopathy
Ding Ding! Round 2020
Just when you thought 2020 couldn't get any worse, BOOM! Lockdown 2.0, and Sean Connery taken from us (RIP Sir Sean). What a bloody crackers year this has become. Since our last update, we've had a fair few developments in old Family Riley. The first being that T has now started his new Secondary School! … Continue reading Ding Ding! Round 2020
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.
Walking a new road under a cloud.
It's been a bit of an up and down few weeks in the old Life of Rileys. This week has seen a few dark days. This happens occasionally, when it feels like everything just gets a little bit much. People often comment to myself and J that we deal with things exceptionally well. Truth is, … Continue reading Walking a new road under a cloud.
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?
2019, Fundraising and Marvin the Monitor
Happy New Year! Apologies for the lack of updates, we spent the Christmas period cocooned in our little family unit and then have since been trying to get back into the swing of things... and trying to fit into our clothes following a few too many Christmas carbs... Mr T is doing well. He was … Continue reading 2019, Fundraising and Marvin the Monitor
‘Un-Super Saturday’
We had quite a busy Saturday planned yesterday: swimming, hair cut for T (as he looks like Wurzel Gumage), parcel pick ups, visit to Great-Grandma and finishing with a family take-away and the Strictly Final (natch). T had his swimming lesson as normal. His wonderful teacher checked how his week and general well-being was, as … Continue reading ‘Un-Super Saturday’
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.
The Life of Riley's 