Tag Archives: epilepsy

Why I love 3D now, the trip update

We know everyone is on the edge of their seats waiting for the big update. We don’t label this as good news exactly, but we do feel we have new insight thanks to some creative investigating by the specialist at Lurie Children’s.

Seems we may have found physical proof of the culprit causing Reese’s seizures. Our doctors have always contended there could be a blemish on her brain but they couldn’t see it, and wanted to wait until she was closer to 2 years old to check again with another MRI.

Guidance from this new doctor says we don’t have to wait. His fancy 3D machines and his experience enabled him to see a cortical displasia crossing horizontally from her left occipital to her left temporal lobe. The area right above the ear.

We spent an hour asking him questions and understanding what next steps could be. He praised the level of detail from our dr and all the ruling out we have gone through. He also felt overall Reese looked in great condition outside of her little brain. We have some recommendations and guidance from him we will now discuss with our primary epileptologist and go from there.

Coming up here, we worried he hadn’t looked too closely at her case, we are now really encouraged by his level of interest. We were concerned they wouldn’t take the case seriously, definitely not the issue. So while our road is far from over, we now feel we have done the right things to date and we can make a more informed decision for her next step.

The emotional side hasn’t kicked in yet. I realize this sounds very clinical, but we both live on the facts and the science. And the brain really is fascinating. So please know we are still processing and we have lots of research to do. We CAN say if it comes to surgery there is a good chance we will head back to Chicago based on how impressive the experience was.

We feel so loved from everyone’s support. Please don’t stop. It’s those unexpected moments when someone reaches out that really push us through. And we plan to thank you each of you some day, some how.

Our sweet girl loves everyone she meets and I know she is a feisty survivor who is going to make the most of this. And when we have passed through to the other side of this challenge you can bet we are going to do all we can to educate and advocate for more research and awareness. It’s the least we can do.

Oh and I apparently have strep. I am deeply sorry to everyone I may have exposed. I had no idea!

So that’s the short recap of our 3 days in Chicago and I am sure there is more to come.

Test this week

It’s another test this Wednesday. We try to downplay it I think to each other and to everyone who asks. But this is a big deal the more I think about it. We are hoping to see a completely normal EEG again, but this time, we will have to stay on the steroids longer to have it stick. That’s assuming they get a good test in the short 30-minute window, and that it looks positive.

Considering her progress in the past two weeks definitely supports the idea that things are working well, we are optimistic. But I think we are just afraid to even have that feeling. Feels very similar to March/April, while we watched her gain each little development back. It was a great weekend, she talks non-stop, testing her vocal chords, her range of sounds, and most definitely her volume. We’ve been cracking up. She may give Davis a run for his money after all.

So regardless of how this goes, looks like we are definitely heading to Chicago in a couple weeks, and that will give us another data point because it will be an overnight EEG again, which gathers her sleep patterns, which haven’t been good in the past. And a new set of eyes can’t hurt.

So there you go, an update, for at least to wait for a real update after we see the doc.

A Mother’s Fight

My arms crush you with Zeus’s strength, and yet it’s but a fleeting touch.
Swirling hurricane winds would fail to rip me away.
Unearthly is this force pulling me to you.

Trembling lips wrap you with iron love, attempting to protect as much.
No fearsome beast could stand to meet my burning eyes.
How weak my arms feel flailing to catch you.

I scream, see fire, claw at the pain.
I sigh, tears fall, it starts again.

Bring on the fight, however long it may be.
A mighty force stands by your side,
For eternity.

Copyright 2013 Carrie Mamantov

Oh Reese, I hope you are OK with me sharing your pain with others. It helps me document what we are facing, since I can’t help you, I don’t know what else to do. I ache for you. This is me desperately wanting to assuage your discomfort and confusion. I would take all this pain in your place without blinking. Anything to protect you from this ugly, scary place you have to go every time your brain waves spike.

Angelic and pure, you have no trace of hate or anger in your soul.

You blink away a blank stare, but it hovers over you and I imagine you hear a buzzing insect— annoying and constant— you try to make it go away, too weak to really adjust yourself, to find relief.

We love you and how you shine from within. We are so fortunate to see your sparkle every day. Almost every day, except for these days.

You have had 2 seizures today and all our previous deductions tell us it can’t still be related to your ear infection, you have had 4 days of antibiotics. And so we find ourselves back at zero. No reasoning to explain what we can’t control.

I hope you can forgive me. If it turns out to be genetics or something we have fed you. I want to do everything right to save you and I will fight to figure this out. I will never give up. Because you are a fighter my sweet girl, and I know EXACTLY where you got that from.