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.
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.
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.
Following the advice of our medical team, we recently spent a considerable amount of time filling out forms to apply for some additional support for T; and to help us to continue to make adaptations to our house/general every day life. The forms were incredibly personal and very hard to complete. Now when I say … Continue reading Reports, appeals and ‘Being 9’.