It was my intentions to give you a daily diary for Toby's progress but as the weeks have unfolded we have had to pay more attention to Toby's seizure activity, ketone levels and bowel movements ha ha ha
Having got off to such a positive start we hadn't prepared ourselves for the come down on a bad day and these past few days we have had a mixture of bad and good.
We still have a strong correlation of less seizures with higher ketones however Toby is having a grow, permanently hungry and so we have had to look at his meal plan to cater for this.
Since we have increased his calories we have seen a marked improvement but now still trying to get those ketones higher as at the moment they are only where they should be at bed time but i am confident this will come....
That said, Toby's seizures have reduced by more than half on a good day and they are reduced even on a bad day in addition we have a lot more good than bad days and despite this Toby is showing improvement in his concentration, language skills and his understanding day upon day and we haven't even taken the medicines away yet!
bless him he's even learnt to say I Hungry! lol
We can enjoy Toby a lot more as he will play and interact with us for longer periods of time these days seem like a small light at the end of our everlasting dark tunnel.... the tunnel is still there but the light gets brighter each day and when we have an off day we try to remind ourselves that even daylight disappears for a few hours and it will return....
We are counting down the weeks to our medicine weaning!!!! I would bet my life that they are causing some of Toby's seizures...
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