Since she's been on the ketogenic diet, we've seen huge improvements in Jade's seizures. She still has her ups and downs, but it has been a definite success, overall.
Now that she's stabilized, we can start thinking about those things that she really couldn't do when her seizures were at their worst. And after typing that last sentence, I've just realised that I never said on this blog just how bad things got.
Jade's seizures got so bad that, some days, she would have seizures more than once-per-minute. She would have clusters that lasted for what seemed like eternities. She was non-functional, barely verbal, hyper-emotional, couldn't walk without stumbling, and spent most of her time cuddling with us. Day and night, she was always with either Fawn or me. Jade required so much attention, it was nearly impossible for us to look after ourselves.
Now, she is talking more and is trying new words, is more emotionally stable, can play on her own, and laughs and dances and sings. She still spends almost all of her time at home and I can't help but think that she misses the child-interaction she had when she was still in daycare.
Fortunately, we still have occasional visits with friends who have kids around her age. I can't describe how amazing it feels to see my child play with other kids.
Now that she's on the ketogenic diet, however, playtime with other kids comes with a certain... danger.
Kids love snacks and kids are taught to share. One kid sharing a snack with Jade can undo everything that's helping suppress her seizures. They say that a single Cheerio can throw her out of ketosis. It's the carbohydrates and, let's face it, there aren't many kid's snacks out there that are low in carbohydrates.
This afternoon, Jade's friend C- was over. They play well together, spending a lot of their time in the play kitchen preparing dishes made of plastic fruits and vegetables.
Later in the afternoon, it was time for C-'s snack. We kept them apart for most of the snack, but eventually they found each other. C- was sitting on a toy and Jade was standing in front of her. C- was eating crackers and a fruit bar.
I watched them closely, ready to leap off the couch if Jade made a move for the food or if C- tried to share. Neither of them did any such thing. Just to be on the safe side, I said to C-, "Please don't share any of that food with Jade, OK? She's on a special diet and needs to eat her own special food."
"Why?" asked C-.
"Because Jade has seizures and the diet helps to stop her seizures. If she eats that food, she might have seizures."
Accepting this explanation, she told me, "I have another friend who's on a diet but I'm not on a diet. I can eat whatever I want."
I nodded. Jade just stared at her.
""I can eat these crackers," C- continued, "I like crackers."
She held a cracker up in front of Jade's face. Jade looked but didn't budge.
"Yeah," I piped in, "Jade used to eat crackers too, but now she has her own special food."
Not too long ago, Jade was a cracker fiend. She used to cry if she didn't get crackers. If she could have eaten nothing but crackers and Cheerios all day, her life would have been complete. While I watch Jade, I can't help but think that the temptation to reach out and grab one of the crackers that C- is dangling in front of her must be huge. Still, Jade didn't make a move.
"I have another friend who's on a diet, but I don't know anyone else who's on a diet. They can eat crackers, too, but my other friend can't eat goldfish."
"She can't?" I enquired.
"She can't eat dairy." continued C-. She held up another cracker, inches away from Jade, before popping it into her mouth. Jade looked at me and, for a long while, I couldn't figure out the expression on her face. I was expecting her to be looking at me with an "I want that" look or even an "I'm going to try sneak one of those" look, but instead her face showed nothing but disinterest.
She made no move to eat the crackers and it made me wonder: does she truly understand why she can't eat the crackers or the fruit bar and put it out of her mind that eating them is not even an option? Does she have that much self-control that she won't take one even if she wants one?
Whatever the answer, I was proud of my little girl for exercising self-control in the face of temptation.
She notices a toy that she wants to play with and goes to retrieve it. She hardly seems bothered by any of it.