Thursday, April 23, 2009

She in There, She Know, Part 2

I've been meaning to update you on what's going on with The Girl, but despite the thoughts swirling around my head constantly, I'm hesitant to write it all down. What I will write is that the new drug is not working for Sophie and that we're on a wean schedule right now. She should be off of it completely in a few weeks. Weaning is hideous -- despite the fact that it's not helping the seizures, the brain is still somehow accustomed to it and a slow withdrawal is necessary. We've done this over fifteen times, and it ain't pretty.

In the meantime, The Neurologist suspects that Sophie is having a recurrence of a syndrome called ESES (electrical status epilepticus in slow wave sleep) which she had over four years ago. Outside of her diagnosis, this period was the worst experience we had had, so you can figure that I'm pretty upset about the idea of recurrence. We are waiting for a bed at the hospital so that Sophie can have an overnight EEG to determine whether ESES is back (it can only be diagnosed through a sleep study). Again, I won't bore you with the details. It just overall sucks.

On the bright side, the weaning of the useless drug isn't going too badly and Sophie is actually BETTER without it. Go figure. I also have an appointment all lined up in Arizona with a famous homeopath who saved our lives the last time Sophie went through this. The appointment is at the end of May. More on that later.

Finally, the gist of this post is to tell you what The Neurologist said the other day when we were talking about this new situation.

ME: Dr., I just don't understand all of this -- I feel obsessed by it and I'm constantly fighting my own feelings of helplessness. It seems that no matter what I do, what we do, Sophie is the same. What I really don't understand is why she is who she is. So full of something, her self, despite all these seizures. It's what drives me and why I can't stop. Her eyes are full of...

THE NEUROLOGIST: Sophie's genetics have determined that her brain is extremely intelligent. That explains why despite all these seizures she's done remarkable things and why she has so much expression.

I'm weeping, now, when she says this because it's just so AFFIRMATIVE. I hate that I need this affirmation from a scientist, but I do. I do.

The Chinese doctor says, "She in there. She know."

But The Neurologist says it, too.

So, I'm carrying on.


  1. I am mesmerized by every photo of Sophie that I see and each time you talk about her. She is in there and she is out here. I can almost feel her.

  2. I'm at a loss for words.

    But this I'm sure of - she knows and she's there! She is a beautiful young lady and you all are in my prayers.

  3. oh my god. yes. of course you weep and lean toward the confirmation of what you know. i cannot imagine what it's like but i will say, for some reason (perhaps your extraordinary writing, seeing, and sharing of sophie here?) i, too, KNOW SHE IN THERE. i know it.

    sending xx thinking of all of you. hope that bed opens up soon.

  4. I agree with Lisa, every picture of her draws me in. She is there hon I see it too!! Hang in there. Am here for you! Namaste, Sarah

  5. be strong....I'm ( my little girl also has seizures)

  6. This brings tears to my eyes, because the few times I have seen her, I can tell. She's in there. She's radiant, and I feel like she is taking it all in. Even during a seizure, she's taking it all in. Yes, she's in there. xo n

  7. thanks for your visit and your sweet comments ... do visit whenever you want and if it brings you little happiness it is great !!

  8. It breaks my heart that she's trapped like that. But just from the pictures you've posted, you can see it! You can see that she's all there and that she knows. I think she knows things that the rest of us don't. She's a very, very special child. Almost otherworldly.

  9. Carry on. Find strength from the affirmation and carry on.

  10. I'm thinking of you as you and your family move through the weaning, the bad sleep pattern, and all of that. I wish I could make it not-terrible. When I finally get my super-powers, I am going to change a lot of things.

  11. Wow, status is very serious. my own daughter has gone through horrible status epileptus as well. I dont think as severe as your sophie, but scary nonetheless. especially when noctournal (as it seems we've both experienced.)

    She's in there.

    Deep down, we're ALL lost inside ourselves, in our own unique ways. Love and hope are the only ways to escavate the "lost." We're ALL in there, perfect and whole... just waiting to be found.

  12. Sophie's story just breaks my heart ... she may be the strongest and bravest girl I know of.

  13. I saw Sophie at the baseball field last week
    and she looked peaceful, content and elegant.
    Every time I see her I expect her to say something brilliant - just like her Mommy.

  14. Of course the neurologist, and you, are right. Even before you posted this I'd been carrying around the image of Sophie looking out the window and thinking about how connected and present she seems in every picture you post. She's so clearly in there!

    Thanks for the nice comment on my blog. So sweet of you to think of sending food! (I uncharacteristically skipped meals b/c the hospital food was so bad..)I am still processing the whole thing but it was clearly good we went and the information will continue to roll in.

    Hope the weaning is tolerable and the ESES is not back. Thinking of you!! Do keep us posted.

  15. That night at your house, in Sophies room...I saw her. Lying in her bed, her big brown eyes looking right at me.
    I could see her in there.

  16. I believe she is there most definitely. And I believe that she knows that you are there and you know that she is in there.

    Oh Sophie, something come along and help this little angel. Please.

    I totally see how you need the confirmation. Absolutely.

    Love Renee xoxo

  17. i just found you through Corner View. I'm the mother of a 2 year old with health issues and who's spent so much time in the hospital fighting life threatening conditions. As I said before, I'm glad I found your blog. I'll be back.



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