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: OT
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.
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?
#trapthetinkle … and Gandalf.
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.
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.
Home Improvements
So its been all change in the Riley household this week; and I don't mean with us as a family, I literally mean the house itself. Up until 5 years ago, we seemed to move every year or so for one reason or another. We were in the wrong city for my career, our landlord … Continue reading Home Improvements
Bouncy Castles do not make stable walkways.
Today, I feel like I made a somewhat epic parenting fail. A few weeks ago I noticed (on the source of all knowledge - Facebook) that a new inflatable park was opening close by. Now T loves a bounce. He is a firm fan of a trampoline park, even if he can't bounce for quite … Continue reading Bouncy Castles do not make stable walkways.
The road to diagnosis…
I think all in all, we've been banging the diagnosis drum now for about 7 years. Even as a toddler, T was unsteady and clumsy. Not unusual for a toddler I guess, but when he woke up one morning at about 18 months old and couldn't place any weight on his legs, we knew something … Continue reading The road to diagnosis…
The Life of Riley's 