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
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?
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…
I didn't actually realise how long it had been since our last update! In the space of the near 2 months since my last post, T has grown about 7000 inches in height, and also appears to have swallowed an old wise man. He has become... profound. He has all the wisdom of an owl, … Continue reading #trapthetinkle … and Gandalf.
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.
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
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’.