I'm sitting here at the top of the stairs, outside of Aubrey's room, in my silent house. I'm almost halfway through my nighttime shift of Aubrey-watching. Jeremy will be up at 2:00 to let me get some sleep. Aubrey is currently having an EEG - at home. How great is that? We just have to watch her to make sure she doesn't strangle herself during the night.
So the last two weeks there hadn't been much improvement. 10-25 seizures EVERY day. Then miraculously, yesterday there were none. ZERO. And today there were ZERO. Truly a miracle. And I can barely describe the difference. Yesterday I got her to laugh by blowing on her tummy. Is there a more beautiful sound than a baby laughing?? Today when I took her to the park she made eye contact with me almost the entire time she was in the swing! It was awesome. And for the first time, she reached up to grab my hand so I would walk with her somewhere. It melted my heart. I love this girl. This is the little girl who is trapped in a locked room of epilepsy. When the seizures are gone she gets to come out and shine. These two days have been BEAUTIFUL.
The tricky part - what changed? The only thing that was different is one of the medications was finally tapered off. So... an ANTI-seizure medication was, in fact, causing the seizures??? And what timing, huh? Just as we get her a third EEG to "map" where the seizures are happening (seizures that have been going on many times, everyday, for three months), they stop. I don't want her to have any more seizures. But it would be great if this EEG could be beneficial to her treatment.
It's like having your car stop making "that noise" as soon as you take it to the mechanic. Ah!
We will see what comes of this.
But I am trusting Heavenly Father is aware of her and of us and this timing is for the best. It will all work out. Just wish I could see how. :)
I am so thankful for loving family and friends to help us. Even in the midst of this struggle, we are blessed beyond measure.
10 years ago