Repetitive Motion

It's moments like these that make me most nervous about Lily's condition.

While writing out her thank you notes for her birthday gifts, I noticed something Lily did that was proof of another seizure.

Notice the dark pink line to the left of the owl...

I asked her what happened.

She told me, "My brain clicked off."

She must have been writing the line down for her "T" in "thank you" when it happened.

She followed the same line back and forth for the duration of her seizure.

It's called "repetitive motion."

And quite honestly, it scared the crap out of me.

Petit Mal Seizures: A Little Insight

With Lily's diagnosis, there came many questions.
What are Petit Mal seizures?
How long do they last?
Will they ever go away?
Why do they happen?
And so on.
I needed answers.

I referenced the Mayo Clinic website to get those answers.
(http://www.mayoclinic.com/health/petit-mal-seizure/DS00216)

All of the following information was taken from that website.
It gave me a clearer understanding of what Lily is dealing with.
I hope it answers some of your questions as well.

Definition:

"Absence seizure — also known as petit mal — involves a brief, sudden lapse of consciousness. Absence seizures are more common in children than adults. Someone having an absence seizure may look like he or she is staring into space for a few seconds.


Compared with other types of epileptic seizures, absence seizures appear mild. But they can be dangerous. Children with a history of absence seizure must be supervised carefully while swimming or bathing because of the danger of drowning. Teens and adults may be restricted from driving and other potentially hazardous activities.


Absence seizures usually can be controlled with anti-seizure medications. Some children who have absence seizures also have grand mal seizures. Many children outgrow absence seizures in their teen years."


Symptoms:
"Signs of absence seizures include:


Vacant stare
Absence of motion without falling
Lip smacking
Eyelid flutters
Chewing motions
Hand movements
Small movements of both arms


Absence seizures last only a few seconds. Full recovery is almost instantaneous. Afterward, there's no confusion, but also no memory of the incident. Some people experience dozens of these episodes each day, which interferes with their performance at school or work."


Causes:


"Often, no underlying cause can be found for absence seizures. Many children appear to have a genetic predisposition to them. Sometimes hyperventilation can trigger an absence seizure.

In general, seizures are caused by abnormal nerve cell (neuron) activity in the brain. The brain's nerve cells normally communicate with each other by sending electrical and chemical signals across the synapses that connect the cells. In people who have seizures, the brain's usual electrical activity is altered. During an absence seizure, these electrical signals repeat themselves over and over in a three-second pattern.

People who have seizures may also have altered levels of neurotransmitters, which are the chemical messengers that help the nerve cells communicate with one another.

This type of seizure may be more prevalent in children. Many children gradually outgrow absence seizures over months to years."

This last sentence is by far the best news thus far.
Because Lily was diagnosed with this seizure disorder at the age of 6, she will likely grow out of them by the time she is in her early teens.
There is certainly a long road ahead.
It kills me that my baby has to go through this.
But there is a light at the end of this relatively dark tunnel.

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.

The Fuzzy Callepillar

For your viewing pleasure.

Lipstick Ladies

The girls wanted to get all dolled up tonight.

They didn't want any help from me.

They wanted to do it themselves.

So I said Yes, but on one condition, they doll themselves up in the tub.

The condition was accepted and this was the result...

Just darling, aren't they?

And I guess a little scary too.

Updated House Pics

Initially this Spring Break visit to Houston was to do some house hunting.

But now as you all know, we found our home a few weeks ago.

Today we get to see how far the workers have gotten on it.

First thing we noticed, brick...

and granite countertops in the kitchen...

and cabinets.
Lots and lots of cabinets.
62 to be exact...

a beautiful tile backsplash...

A fireplace and tile floors (covered in plastic)...

The real guest bathroom, with shower...

Guest bedroom...

View from the family room...

The master bathroom...

Study...

Dining room...

Entry way...

Play room...

So much progress in so little time.

We can't wait to make this house our home.

The Cat's Meow

I may not be a huge fan of felines, but how can you not adore this little feline face...

Meow!

Houston Children's Museum

It's Spring Break!

We will not be spending it at the beach, but rather, we will be in Houston.

A good vacation to me is shopping and eating.

Which we have done plenty of, but today we wanted to be sure that the girls were entertained.

So we went to this really cool children's museum.

The girls wanted to pose in front of the giant child statues...

Then they made Ditado and me do it...

There was so much to do here.
In fact the place was so big, we didn't get through but half of it in the three hours we were there.
The girls loved the exploring and playing...

They learned about magnets...

and pulley systems...

And my favorite, Chemistry...

My future Stanford Med School Graduate...

Liliana, finding the cure for some illness...

Still, with this museum being as big as it was, we still managed to run into some old friends from Arkansas...

A little checkup of the really sick mannequin...

And then more pictures on our way out of the museum...

What a great way to pass time on a really hot day.

From what I hear, there are a lot of those in Houston.