hello to all my fellow followers..... I am so so sorry I haven't updated in a while the truth is we have had a rollercoster journey and I would have been writing some spectacular things and some really sad things.
Toby has had some very upsetting moments but he has also had some great days. Having been to the consultant we are finally weaning medicines and to say i'm scared is an understatement....
As we say goodbye to Clonazapam over these next few weeks I will be on tender hooks looking for changes in behaviour and seizure activity.
The first few days of weaning we noticed no change however a week later he hit some rocky moments, i now realise it was actualy low ketones due to illness that was causing the change.
I'm writing about Toby as I see him now, bright, happy and content a truly beautiful boy ! seizure activity is at it's lowest and we are still tweaking the diet, for anyone starting the diet I would have to say please have patience... something which I have little of when it comes to my desire for seizure relief!
Toby now has a wonderful nanny, Jo who he calls Doo and he transforms when she is around as he thrives from the stimulation and fresh energy that she brings to our house. I am back at work and I have to say I love it, i am tired but with spring around the corner i come home smiling and satisfied all round......
