Thursday, March 29, 2012

EEG

While on Spring Break in Houston, I received an email.
It was from Lily's teacher.
It basically told me that Lily is a great student and doing really well in school.
Her teacher also went on to inform me that Lily had exhibited some behaviors in the past week or so that has her concerned.

Not the kind of information you like to receive via email.

She said on different occasions that Lily had basically "spaced out."
This happened during circle time on one day and after the lunch time prayer on another day.
Lily also had a couple of instances where her class was walking and although all of her classmates stopped walking at one point, Lily continued on.
When her teacher called her name, Lily did not respond.
She felt she needed to bring this to my attention because she was concerned.

I'm happy she did.
All of these episodes Lily had exhibited brought back an instance I had with her the same week.
We were at home and Lily had misbehaved.
While I was reprimanding her, she just stared at me and didn't respond.
I kept saying, "Lily!  Lily!  Do you hear what I am saying to you?  Why aren't you saying anything?"
Nothing.
Just a blank stare from her.
After some time passed, she walked away.
As she walked away, I said again, "Did you hear anything I just said to you?"
Lily's response to me was, "What mama?"

With so much change going on in our lives, I just assumed she was being defiant.
I even told Joe that's what I thought she was doing.
Here was a six year old girl who's whole life was changing.
Her daddy is living in Texas.
We are going to be moving.
She is leaving her friends,
changing schools and moving away from the only place that is familiar to her.
So did I think she had a right to be acting out and defiant?
Of course.
Was this at all like the little girl I know?
Not at all.

Without the email from her teacher, I would've never given that moment a second glance.
But now I was worried.

So I quickly got an EEG scheduled for Lily.
Was I hoping that it was behavioral and not something more?
Absolutely.
While I knew that changing a behavior would be difficult, potentially finding out that there was more to it literally broke my heart.

Lily had an idea that strange things were happening.
When my mom asked her about the episodes at school, Lily said that "sometimes my brain clicks off."

On the morning of the appointment, she was tired.
I had to keep her up late the night before and wake her up early this morning.
She was inquisitive about the test they were going to do.
Was it going to hurt?
Are they going to stick wires in my brain?
Those were the easy answers.
No and No.
The more difficult question came next.

"Mommy, what if there is something wrong with me?"

What a heavy question that I did not have the answer for.

At the EEG appointment, Lily was a trooper.
They applied the wires and she got settled in...
But before she could go to sleep, there needed to be two tests done.

The first test required Lily to close her eyes while a bright light flickered.
She passed test one with flying colors.

The second test required her to continuously blow on a pinwheel to make it spin.
She kept blowing.
After blowing for a moment or two, she stopped.
The nurse came over and started saying,
"We have blue rhinos, pink elephants and purple monkeys."
She paused and then began calling Lily's name.
"Lily.  Lily.  Lily can you hear me?  Lilyyyy.  Lily sweetie."
Lily then looks at her and says, "Can I close my eyes and go to sleep now?"

It didn't take long for Lily to fall asleep.
Once asleep, I was able to see some of her brain activity on the monitor...
Just standard brain waves.
But after a few minutes, those tiny brain blips began to fill the page...
This is what a seizure looks like from the brain side of things.
Lily only slept for ten minutes and had 4 of these seizures.

The nurse came back into the room after she had just two of them and informed me that I was to see the neurologist today.
That was totally unexpected and completely frightening.
Turns out Lily not only had these seizures while sleeping, but test number two done before the EEG produced a seizure as well.

I was not supposed to see a doctor until April 17.
Being told that Lily would immediately be seen caught me off guard.
I knew there was definitely something going on.

It wasn't a behavioral thing.
It never has been with Lily.
My baby had a diagnosis.
Epilepsy.
Petit Mal seizures.

There will be medication to help her.
But the truth is, 
My baby is sick
and my heart hurts.

3 comments:

  1. Dear Carrie,
    It breaks my heart to read about your Lily being diagnosed with epilepsy. My prayers are with her & your family. You are an amazing mom and Lily is lucky to have such a staunch supporter by her side as she traverses this new windy path through childhood.

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  2. Kiersten,

    Thank you so much for your kind words and prayers.

    ReplyDelete
  3. tears. :( even already knowing this story and what happened that day...still breaks my heart.

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