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.
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.
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
Its been a busy couple of months in the Riley household! I've had my show on at school which means that between growing this teeny tiny human in my uterus, rehearsing at school and snuggling my family, I've basically just slept for the remainder of the time... hence the lack of posts! However, I am … Continue reading Funding, Q-Shaggys, T Obama and… Penguins.
Yep. 2019 is gonna be busy year for us! 3 are becoming 4. SURPRISE! We are very excited... now that we have overcome the shock. We have always been very honest about our journey; the good, the bad, and the ugly (crying). So we thought we would share our little snippet of news and shed … Continue reading A Christmas Miracle.
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’
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.
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.
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’.
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.