Thursday, February 16, 2012

Two Years

This is the third important day in a row. After this, we're taking a break from days of significance.

Two years ago today, we drove to Cincinnati Children's Hospital in a snow storm for an unrelated appointment and ended up having the chance to initiate the ketogenic diet on the spur of the moment.

It was not an immediate miracle for us. I had read all of the stories about kids who had stopped seizing immediately and started walking or talking on the second or third day. It was a dangerous kind of hope that I thankfully didn't allow myself. We were only looking for some seizure control, which would allow us to wean some seizure meds. And it's a good thing I wasn't expecting a miracle, because Collin spent our whole stay in the hospital either seizing or passed out from meds. His tummy was a wreck from the ketogenic formula after spending his whole life on breast milk and he was painfully constipated. By the time we left the hospital, he was still seizing and was on more medicines than he had come in on. Talk about discouraging.

Most doctors told us that we would know within a couple of weeks whether or not the diet was going to work for Collin. Thankfully, we didn't listen and stuck it out. You know the story by now.

The general rule of thumb is that after two years of seizure control, it's time to start talking about weaning off the diet. For us, that would mean June if things continue as they are. We're in no hurry to wean, though.

In fact, the diet is so much a part of our lives now that I usually don't even think about what a colossal pain it is. And then when I do think about what a colossal pain it is, I look at Collin, laughing or standing or using his vision, and I keep my mouth shut.


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