Big day tomorrow

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It’s been almost three months since her surgery! Time is just flying by right now.

Most importantly, we’d love prayers that things go smoothly tomorrow. She is going to be sedated so that we can hook her up for her post-surgery EEG. This is where we’ll find out how her brainwaves and seizure activity look now. They attach loads of electrodes to her scalp, which unfortunately is just not something she’ll tolerate while awake anymore. She will wear the electrodes and have to carry around a backpack recorder. We will bring her home with this set-up and it will record her brain activity for 48 hours before we return the equipment to Duke.

Before surgery, she was much more out of it. Though she didn’t like the EEG hook up, she’d often just go to sleep during it as a way to get out of something that upset her. Not so anymore. She’s got bruises on her legs right now from her pediatrician trying to hold her still to look in her ears this week. She is extremely uncomfortable now during anything medical. I attribute it almost entirely to increased awareness. And though it’s something we have to work on so that the many doctor appointments on her calendar won’t be so stressful for her, for right now, we are just trying to make things a bit easier.

While she’s sedated tomorrow we’ll also be drawing some blood to check a few things. Though most of the post-surgery healing has been fairly easy, we’ve had some serious difficulties lately with feeding and her weight. She had lost four pounds since surgery. At just 29 pounds at almost age 7, it was suggested that we might need a feeding tube to keep her healthy, since feeding her orally was not. I’ve been working tirelessly since then to pack on the pounds and we are finally starting to see some movement in the correct direction.

Over the last month, she completely boycotted food for one week, boycotted liquids for longer, but with lots of creative methods we eventually got her back eating a drinking. It’s been crazy, but right now what we are doing seems to be working (albeit slowly) so I just hope it continues. I am having to purée or mash most of her food (though she still eats what we eat) and feed her with a spoon. She no longer self-feeds anything and she refuses to chew anything crunchy. She prefers spicy to bland and at times has consisted on a diet almost entirely made up of Whole Foods guacamole. But I think things are improving so we’re just going to keep at it until I get her back to a weight where her doctors feel comfortable and hope we can avoid any more mention of a feeding tube.

There is so much more to write about but I’ll write a longer update once I have the EEG results. She’s still doing really well seizure-wise since the surgery. I am thrilled to say that she has not had a single seizure that would cause her to be in danger physically since surgery. I am so unbelievably thankful to God. We also feel enormous gratitude to Dr Grant and all of you lovely people who have prayed for Maddie.

She does still have activity that I’m fairly certain is seizure activity, but it doesn’t cause her to fall or hurt herself. And it doesn’t make her cry or seem in pain. So we’ll see what the EEG says about it…..and what the doctors think. The amount of improvement we’ve seen in her seizures truly exceeds even my greatest expectations for the surgery. But now that things are going SO well in that regard, it’s hard not to hope and wish for complete control. Especially since for the first time in so may years it actually seems attainable.

There’s much more to discuss but for now I need to get ready for tomorrow! As usual, I’m leaving out most of the bad stuff and focusing on the good. Life has been really challenging since surgery because there have been so many changes in such a short time. But every time I start to type an update, I realize just how amazing the big picture stuff is right now and hate to waste time complaining about the little stuff. Sometime though, I hope to get it all down, if only for my own sake so that I don’t forget.

Thanks for all of your prayers and support!

Love to everyone,
Liz, Brandon, and Maddie

 

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