On the beginning of an upswing?

By 20th January 2017 No Comments

Kai woke up a bit today. Opened his eyes (!!!!!!!!), and looked around. His gaze wasn’t exactly a normal baby gaze, but I’ll take it. He opened his eyes!!

To be fair, he looked like a baby on drugs. Super dopey, eyes heavily lidded. Which he is, really. He’s on so many drugs so that he woke up today is really quite impressive. He’s also been babbling. Not a lot, not a stream of baby noises. Just the occasional sound but oh, hearing his voice!  I’ve missed hearing it. I cried when I first heard his little mewl.

There’s also been lots less seizures. We’ve been practicing baby massage and we discovered that with a bit of foot/head massage we could calm him and head of he seizure. So now he’s getting an awful lot of baby massage.

He’s also got a silly amount of wind, which we struggle with. He’s not really burping. Or pooping. I’m suddenly very very involved with the minute details of my babies digestive system. I’ve never been interested in his farts till now.

He’s a very different baby than he was a few weeks ago, before we went in. I can already see the beginnings of what the seizures and NKH has done to my little guy. It’s bittersweet, I’m heartbroken to see the deterioration but so so so pleased he woke. I’m hoping that as time passes he’ll improve and we can go back to being a bit more like we were. Fingers crossed!

PS You guys!! Thank you thank you thank you for the donations. They’re still rolling in and we’re so so so amazed at how much we’ve raised!! Also, for everyone that has shared our story or the just giving page, thank you. It means everything to us x


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