by Tim O'Grady | Dec 3, 2017 | Updates
I really don’t know where to start with this month’s update, so much has happened and so many people have been incredibly kind and generous. Let’s start with the not so great stuff, for the last week and a bit Toby’s had a really bad cold and chest infection, he’s...
by Tim O'Grady | Nov 13, 2017 | Updates
I realise I’ve not written an October update and apologies for that, Life’s been a little tough over the last few weeks as Toby’s seizures have got worse. The fully convulsive ‘tonic clonic’ seizures have increased in frequency and duration and seem to be impacting...
by Tim O'Grady | Oct 1, 2017 | Updates
We’re very lucky that people often ask “How’s Toby?” but we find it such a difficult question to answer, right now, he is having a fully convulsive seizure every day, which means as well as the seizure he’s unconscious for 40 mins afterwards, and he has a...
by Tim O'Grady | Sep 1, 2017 | Updates
I’m going to start this update with thanks, thanks to all of you who read this and support us in so many ways. Toby’s all terrain buggy is suffering with overuse and about to give up carrying him, his oxygen and rescue meds but thanks to your generosity we have Toby’s...
by Tim O'Grady | Jul 31, 2017 | Updates
Back in April we met with Toby’s neurologist and agreed to reduce one of his medications, we didn’t have great seizure control and all the meds have side effects, very broadly, one hinders his mobility, one his speech and one his eating, to reduce any of these side...
by Tim O'Grady | Jul 4, 2017 | Updates
Through June we’ve continued to reduce Toby’s clobazam, one of the meds that helps ‘calm’ his body and brain down to reduce seizures. It’s a stronger version of Valium, so you can imagine what that does to him. By reducing it we were hoping to see a more alert,...
