day sixteen

Today is day sixteen, meaning it has been sixteen days since Calvin’s last observed seizure. I say “observed” because I wonder if perhaps I sleep through them once in a while, even though I have the baby monitor on high, blasting out its nasty hissing white noise. Michael assures me that I have not missed any.

The last time Calvin went sixteen days between seizures was in August of 2009, so we are hoping that we might have found a second drug, after six that essentially failed, that could help prevent his seizures. It looks promising since he’s had a cold for the last week and he has never, in my memory, had a cold without also having at least one seizure. We still have a long way to go before we can be certain and, like everything in life, there are no guarantees.

I spoke with another mother the other day about her child’s seizures. Her son, who is probably around three years old, has had some luck with the same drug—in addition to a special diet and one or two other drugs. She seemed pleased to tell me that he was only having twenty seizures a day instead of forty. I, too, was happy for them, because I know that any improvement is a welcome one.

I remember, when I was first researching epilepsy, speaking with my friend, whose child was cured by using the Ketogenic diet. Prior to the diet his son had been having hundreds of seizures every day, even though he was on several debilitating drugs.

So, day sixteen feels pretty good in the scheme of things, but, to be honest, I’d prefer not to be counting at all.

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