by Tim O'Grady | Jun 6, 2018 | Updates
After a pretty good month in March, the last 8 weeks couldn’t have been more different. The reality of Dravet struck again with another change to Toby’s seizure pattern. Not only have they increased but he is now having half of his seizures when he is asleep either...
by Tim O'Grady | May 1, 2018 | Updates
It’s been a tough month for all of us, Toby’s seizure pattern has changed and he’s started having seizures in his sleep. The first seizure happened just before 5am on a Saturday morning, we had the monitors on as usual and woke to the horrible noise Toby makes when he...
by Tim O'Grady | Apr 4, 2018 | Updates
March started in a scary way for us, not the usual seizures but the ‘Beast from the East’ which made a trip to Helen House and beyond a little stressful. Getting to Oxford was ok, just, and we checked Toby in and headed off as quick as possible for the short 30miles...
by Tim O'Grady | Mar 4, 2018 | Updates
February had lots of positives but when the negatives came they caught us off guard and really shook us both up. Lots of smiles and laughter Toby has been on good form, he’s still eating bits of crunchy, textured foods with lots of flavour, that’s me trying not to...
by Tim O'Grady | Feb 1, 2018 | Updates
I know I often say that the last month has been a rollercoaster, it’s an overused phrase but it doesn’t just demonstrate the severe highs and low we experience but also the speed of change and the physical and mental rush of life with Toby. Christmas was ace, he was...
by Tim O'Grady | Jan 1, 2018 | Updates
Happy New Year to you and all your family, once again, thanks for keeping up with us over the last year, it’s great to know you’re there. Dare I say it but December has been a great month for Tobes which considering how ill he was at the end of November when he was...
