We have not seen a seizure in so many days!! I know there will be breakthroughs, and we've had reprieve before, but it's still such a celebration when we have a period of seizure freedom. I've come to realize how much the seizures interfere with not only development and attention, but also with quality of life. Even one thirty second seizure a day is taxing on all of us. I didn't recognize how much even a little seizure zapped all of our energy because of the worry, stress etc. I have had more physical and mental energy; it makes me feel good when Lily feels good.
She is still picking up a ball with two hands, feeding herself very well, playing more with toys, puckered her lips for a kiss, sometimes responds with no to a question (while also shaking her head no as well), pushing toys away that she doesn't want to play with, and using uh-huh with more frequency to mean yes. She's also paying attention to longer books and laughing at more complex things. She loves being told that she's clever, pretty, and her favorite is that she knows how to help! We have a toy that counts and when it gets to 10, I'll say, "Lily knows those numbers already, she's so smart," and she just cracks up laughing. She also likes for us to vocalize how she's feeling, as in, "Lily is tired of being in her high chair; Lily is done with dinner." Then she'll laugh and say, "uh-huh!" I would say that that after three years of fighting tuberous sclerosis, that it is the Afinitor that is helping her. It must be--we've never seen this much development progression, even during seizure lulls. It fills me so full of hope. Of course, there's always the worry of the side effects and all of the future unknowns with a newer drug, but it's all we have, so we have to gamble a bit. I'm so pleased with all of her progression that I try not to think about it and just focus on today. And today my friend is cloud 9!!!
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