Gillian Exley

Mom to two amazing kids - one of whom has special needs. Wife to mountain-biker/race-organizer Stephen. I teach High School Drama/Musical Theatre. I read endlessly about brain injury recovery and epilepsy research in a quest to give my daughter an incredible life.

Lola’s Big Day

Today was Lola’s year-end celebration at school. Deannie rehearsed and practised, practised and rehearsed so that Lola could participate in the songs and ceremony. It was a big deal. Lots of patience, waiting, following instructions…

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argh

Okay, so I took pity on you poor blog readers and updated you a couple of weeks ago, but it won’t post. So it’s hanging out in my draft folder and I’m so great with…

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Long overdue post!

Okay, so I haven’t been the best blogger lately. In my defense, I’ve been kinda busy. Lame excuse, but it’s my blog so I can do things like that. Lola is still on the ketogenic…

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Waiting for spring…

It’s been a tough few months on the seizure front. And where the diet’s concerned. The past couple have days have been a bit of a reprieve from the “norm” and that’s been great. Amazing…

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Mr. Right…

Our big news this month is that Lola has found her right hand! Yay! She’s not 100% with it yet, but she is using it all the time to help carry big books and toys,…

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….just whispering….

……don’t want to jinx anything, but Lola has had NO seizures today. I can’t believe I’m writing that. Every morning for nearly a year, we’ve watched Lola have a massive tonic seizure in her chair…

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Hello 2011!

This is Lola’s friend, Abby May. She passed away Thursday evening after a lengthy battle with mitochondrial disease. Many prayers for her mom, dad and brother as they mourn her loss. Such a sweet girl….

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seizures suck

Liam and his pal, Abby – who lives across the street. This bunny’s sick of trick or treating and wants outta the bunny suit. Where’s the good stuff? There. I’ve said it. And waiting and…

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