Toby’s November 2018 update

This month saw two major events for us, building work commenced and a certain someone had a birthday! Toby’s fifth birthday was something we never thought we’d see at points over the years but he’s here, doing well and most importantly, able to eat his cake! It’s the...

Toby’s October 2018 Update

Last months update was pretty doom and gloom and it’s so easy for us to get caught in a spiral of feeling pretty down. It can also change at the drop of a hat. Just a few days after publishing the last update I bumped into a couple of friends in the chemist in town,...

Toby’s September 2018 update

The first day of September wasn’t great for Tobes, being a Saturday he was indulging in some washing machine watching, a favourite pastime, when he suddenly went into two minute seizure. Kim was all over him making sure he was breathing and wasn’t turning blue by...

Toby’s August 2018 update

The start of August was terrible for Toby seizure wise, he was having one, two or even three fully convulsive seizures a day which creates a downward spiral as he gets over tired and can’t cope the next day so the cycle continues. He was at the play scheme at school...

Toby’s July 2018 update

I’ve really struggled writing this update, it’s been hard to find the right words to describe where we are now as life has once again changed. In the early years everything was about medical emergencies and dealing with highly stressful life and death situations...

Toby’s June 2018 update – a big ‘thank you’

  This is going to be a short update as we want to focus on really saying ‘thank you’ to some incredible people, here’s why: On Friday we returned from 3 days away in Italy, we’d had a lovely city break in Bologna eating lots of good food, drinking the local wine and...