I think we’re turning a corner 🤞

“Do you think it’s all the people who have been praying? Because this almost happened right after you put up that post.” – Brian

Because, y’all, I think we might have turned a corner. Eloise has been napping less, staying alert more, and — finally, after three very long weeks — beginning to eat and drink again.

A mom who has a medically complex kiddo of her own said to me, “When you go through a trauma, you sometimes hold your breath, waiting to just get back home so everything can be normal again. But, when normal doesn’t return, the floodgates of worry open up.”

That’s where we’ve been. Stuck in a seemingly endless cycle of worry and grief for over a month now. Starting with those seizures we weren’t sure would go away. And then ending with a kid who just slept all day and refused to eat or drink — a child who was hardly recognizable as the kid we’ve come to love.

Her sleepiness and not eating — who knows what’s been causing it. Is it the increased dose of Valproic acid? Is it the addition of the med Clobazam? Is it withdrawal symptoms from the Keppra we’re weaning her off of? Is it her teething? Is it some or all of these things? Will it go away on its own? How long will it last? Do we need medical intervention? Is this a permanent side effect we need a permanent solution for and that’s just the cost of seizure control?

Being a parent is hard enough. Add in the complexity of global delays and the trauma of treatment resistant epilepsy and you have a recipe for some real rough spots in life.

But we knew hard times would come. It’s just even scarier when you aren’t sure if stopping her seizures — which threaten her life — may come at the cost of her personality. This little girl we’ve come to love.

We aren’t out of the woods yet. She’s still more sleepy, has lower energy, and is eating less than she did before. But it’s finally looking like there may be light at the end of the tunnel.

Thank you for your support, your love, your prayers, your good vibes. I think they’re making a difference— so keep ‘em coming.

All our love,
Mallory, Brian, and Eloise