The Results

The last time we went to the hospital for testing, Elisabeth knew exactly where to go.  She wanted to thank the nurses and techs who were so kind to her during her EEG testing.  So, she wrote a sweet thank-you note, and made me go to the store, and get them a cake.

We left early for that test.  I didn't want to drag a cake all over TX Children's for the morning.

On the way to the elevator, she spotted an adorable little boy, who was maybe 8 years old.  His head was cool with a summer crew-cut.  I remembered when my boys were that young and cute with their summer cuts.

The little boy turned around.  "MOMMY!"  She whispered.  "Did he have brain surgery like me?"

The sweet little guy had a large, healing incision, covered with stitches, across the back of his head.  His hair was shaved all around it.

"I don't think it's in the same place as you, sweetheart.  But look how healthy and happy he looks!  Maybe he's better, and won't have problems anymore!"

"Oh, OK."

We took up the cake to the neuro floor, and headed back for her test.  I didn't let her see the worry in my face.  Of course, I knew brain surgery meant some incisions.  But, would her hair be shaved?  Would she spend the next few years with short hair?  It's funny the things moms obsess about.  Of all the possibilities facing her, why the hair?

I tried to put it out of my mind, and just decided then and there, that if she did lose that gorgeous, caramel colored, shiny halo, it would be temporary.  We would get extensions, or do whatever we needed to do to make it easier for her.

We still didn't know if she'd get surgery at all.   It was totally possible that her testing showed she wasn't a good fit, and we'd have to deal with epilepsy forever.  A shaved head is nothing compared to a lifetime of disability.  Perspective.

When we got home, I told my husband, Scott.  I haven't mentioned Scott very much, but he was our strength.  Our common sense.  Our rock, in a sea of emotion.  He looked at me, and said, "we're taking a vacation."

Bless him.  He's my hero. He booked a mini vacation in two weeks!!!  We talked about it, looked forward to it, and took our minds off all. that. waiting.

The day before we left, I got a phone call.  It was Dr. Quach!!  I almost passed out from the suspense.  "Well??"

"We presented her case to the epilepsy conference.  Dr. Anderson presented her EEG results.  Dr. Chapieski, her psych results.  We showed all the MRI and scan data.  It was unanimous that she is a good candidate for a left temporal lobectomy.  We think it is the best course of action for her."

Oh, the relief.  The wait was over.  We knew what was coming. Well, almost.  After discussing all the details, he asked if I had any more questions.  "Well, one.  I know it's shallow, but I just need to know.  Will they have to shave her hair?"

"No.  Dr. Curry takes very, very little.  She has long hair?  It won't show."

Blessing upon blessing upon blessing.

"No good thing does he withhold from those who walk uprightly."  Psalm 84:1

More testing

Even sweet girls have their issues.  Sweet Elisabeth does NOT like pain.  When she was three years old, she skinned her knee for the first time.  This happened while I was bragging to the neighbor that OUR children went to sleep at night, when told.  She started screaming and crying and sniffling.  She just. didn't. stop.  For hours.

When we put her in bed, she saw a scab, and thought she was bleeding out.  'I"M BLEEEEEEDING!!!!!"  It took her 3 hours to go to sleep.  I learned to be careful about bragging.

So, when she started having so many needles, we had to come up with a plan.  We discovered Lanacane from the drugstore would numb arms.  We'd slather it on, on the way to the hospital.  We'd put it on again when we got to the hospital.  It worked somewhat.  Except when she needed to get two sticks. Her little arms just didn't like giving blood or holding IV tubes for long.  So, many times, we'd joke that she got two for the price of one.

She didn't think that was very funny.

The month of April was a blitz of testing.  She spent 8 days of that month at the hospital.

After the first seizure during EEG testing, she had 13 more over 36 hours.  The final one was at the right time.  Early Friday morning.  The nurse injected the isotope, and our eyes met.  "It's done," she said. Elisabeth came out of the seizure.  "Wait!!?  I had a seizure??!!  I can go home???!!!"

Within 30 minutes, she was lying perfectly still while metal plates moved and clicked about a quarter inch from her face.  Sweet girl.

Then, we went home!!

After that, the testing continued.

Vision test:  Check.
MRI (two hours with sedation): Check
Psychological Evaluation:  Check.

Wait, psych evaluation??!!  I asked Dr. Quach why that one was necessary.  Oh, it's not about 'how are you feeling lately.'  It was a comprehensive, all day test of her mental capabilities.

She passed all of them with flying colors.  It turns out she's perfectly normal, except that she has epilepsy.

The surgeon's nurse called to make sure we were getting everything done correctly.  We were.  She told me that Dr. Curry would present Elisabeth's case to the epilepsy conference on a Tuesday, in two weeks.

 Now, all we could do was wait and hope.

While we were at the hospital one morning, she was fussing about the needles she knew would come.  "I hate needles.  I hate blood. I wish I didn't have epilepsy."

She happened to look up right then, and she spotted someone else in the lobby.  It was a little boy.  He was in a wheelchair, with his poor, little arms and legs moving.  The aide was checking the oxygen tank, attached by tube to a face mask.

"Oh, mommy,"  she whispered in my ear.  "Do you see that little boy?  Some people are way worse than I am."

"I know, sweetheart, we should pray for him.  We are so very, very blessed that you are mostly healthy, and that your epilepsy might be fixed."

The complaining stopped.

"For I have learned, in whatsoever state I am, therewith to be content."  Philippians 4:11

EEG Monitoring

We arrived Monday morning, bright and early.  Elisabeth was brought to her room, and shown around.  The tech attached 28 EEG leads to her head, with some type of glue.  She lay still and grinned for the whole hour and a half.

We needed camera, EEG, and isotope data on 3-5 seizures. The isotope test is time sensitive, so one seizure had to be between 9:00 - 3:00.  Once Elisabeth had them, she could go home.  We were hoping for a quick stay.

Elisabeth was realizing hospitals aren't comfortable.  She didn't like the itchy leads. She didn't like having her bed elevated, and she didn't like being confined to a room.  It was hard to have a needle in her arm, a backpack attached to a wall, and a pole to pull around every time she moved.

But, she loved having a menu, and meals brought to her on a tray.  She loved the child life helpers, and she loved getting to play games, do crafts, read, watch dvd's, and have all that free time and attention.

She loved hearing the voice over the loudspeaker.  "Did I see flowers in the corner?"  She'd giggle and laugh, and "yes!!!  My pastor sent them!!!!"  All smiles.  Sweet girl. 

Day one:  No seizure

Day two:  No seizure.  They injected the isotope at 3:00, and got a scan of her brain while normal.

Day three: We were starting to wonder by then. Would she have any at all?  How long can we stay here?  Do we need to re-schedule mom's flight?  

We started trying to trigger them.  Sleep deprivation.  Jump.  Heat up the room.  Jump some more.  Elisabeth started teaching the child life girls her ballet moves and stretches.  The voice applauded over the loudspeaker.  She grinned, and kept going.  Every hour she got up and jumped.  IV and leads attached.  Nothing.

The sweet nurse, Angela, who watched her all day, isotope in hand, made friendship bracelets with her.  3:00 came and went.   Angela packed up the isotope injection, and left.  We'd have to wait another day.  

Elisabeth's good friend Anna came by to visit around 4:00.  Elisabeth got super excited and ran to the window.  All the sudden, we heard the voice over the speaker having a different tone.  "Elisabeth, can you count to five?"  "Elisabeth can you remember this word: Elephant." 

 She was having a seizure!!  She didn't remember it at all.  No memory of the word.  But she was glad everyone was happy.  The seizures came quickly after that.  Too quickly.  We gave her a very small dose of med, and they stopped again.  That med is a lifesaver.  No doubt about it.

At the hospital, they have a volunteer radio station, called 'Radio Lollipop'.  On some weeknights, they'd do a live show, with requests, games, and prizes.  Elisabeth was all ready.  Phone in hand.

"The 9th caller will win a prize."  She dialed.  wrong caller number.  She dialed again.  "You've won the prize!!!!"  She was beside herself with joy.  Jumping up and down and laughing.  The lady asked Elisabeth if she knew the song that was playing.  Yes. "Would you like to sing along, into the phone?"  Oh yes!!

I watched her, holding that receiver and singing her heart out.  Her face was one big smile.  She radiated joy.  

It was then that I realized something.  In spite of stress, discomfort, medication, and sleeplessness, her frail little body had a spirit of iron.   She had a strength to her, a joy, that showed through, even in the worst of circumstances.  At the young age of ten, she had become a true Southern Lady. 

Cure or no cure, she would be all right.

Weaning from her meds

I have a mama's daydream.  In that daydream, I can keep my girls in a soft, pink, fluffy, fuzzy, warm room, with soft pillows and stuffed playthings, and they'd be content to stay there forever.

Well, I got my wish for two weeks in March.  Elisabeth's first test for the surgery was EEG monitoring.  This means, she'd stay in the hospital for a week, while attached to EEG leads, the Dr's could have hard data about her seizures.

The tricky part before the stay was: She had to wean off her medication.  Dr. Quach, her epileptologist, gave me the formula.  We'd reduce her first medication over a week, then reduce the second med, over the second week.  She would get her last medication about 60 hours before her hospital stay would begin.

During those two weeks, we went nowhere, enjoyed being together, and watched her constantly.  She had no seizures at all!

For me, it was paradise.  We had been putting 500 miles a week on the car with the kids activities and classes.  Really. So, it was a nice break, and an opportunity to spend time with each other.

My mom flew in right before the hospital stay, so she could help watch the kids.  We were so excited to see her!

I was thrilled that weaning Elisabeth off meds hadn't caused any seizures to happen.  It had seemed to me that the medication wasn't doing a whole lot.  If she got rest periods, even on low meds, then why were we taking them?  Maybe her condition wasn't as bad as I thought.

After two weeks inside, the kids had some serious cabin fever.  They desparately wanted to go somewhere.  So, we took them to an Easter egg hunt.  There were 3 adults to 3 kids.  It was a gorgeous, sunny day, and we would be on the grass.  We could keep a good eye on Elisabeth, so we went.

She dropped her cup in the parking lot.  Had a seizure right there.  Didn't know it.  "Wait?  Why's my drink on the ground?"

I figured she was due.  There probably wouldn't be another one until that night.  So, we went to the hunt.

I forgot how egg hunts work.  The eggs disappeared like a tidal wave, as my startled kids ran behind the wave, finding nothing.  Katherine started to panic, and my sweet Elisabeth directed her to the bushes, where some eggs were still hiding.

They ran to the bushes, only to panic as all those eggs started magically disappearing, and Katherine still had an empty basket.  By then, her eyes were big, her lip was quivering, and I was about to make a trip to the store.

"Here, you can have some of mine,"  said a very nice little boy.  She brightened up.  Then she said, "Elisabeth's having a seizure."

There Elisabeth was, standing in the grass, swallowing and gulping.  I touched her arm, to keep her from running. "STOP!!! YOU"RE HURTING ME!!!!"  She still wasn't there.  People started staring and glaring.  I ignored them, and kept my hand on her.  "STOOOOP!!"  My mom, gently took her other arm.  She shook to get free, and run toward the road.  We held on.  Then, it was over.

My sweet girl blinked, and said "did I have another one??"  She was now ready to share her eggs with her sister, too.

We headed out to go home.  Enough was enough.  Except she had another seizure on the way out.
My mom alarm was going off again.  This isn't right.  It's too many.

Just then, like a miracle, our Dr. Anderson was texting.  "I'll be Elisabeth's Dr. next week."  I texted back about how excited Elisabeth was about the 'hospital vacation'  and that she was having seizures.  Her reply was, "Let me know if there are too many."

We drove home.  I rode in the back with Elisabeth. Emergency med in hand.  She had another in the driveway.  Then another.  And another.  And another.  I texted Dr. Anderson back.  "She's had seven seizures today.  3 in the last hour.  Is that too many?"

Sweet Dr. Anderson called me from the grocery store.  On Easter weekend.

It was too many.  A lot of seizures in a row are called a cluster. Elisabeth was clustering.  We gave her another dose of her medication.  The seizures stopped.  We would wait and wean completely when we got to the hospital.

I was wrong.  Her medication was doing a lot.  What would have happened to her, if we didn't have medication???!!!

Getting seizures at the hospital shouldn't be too much of problem.  We could be out of there by Monday night.  Or so we thought....

A whole new world

True to her word, Dr. Anderson returned my emails and calls.  It turns out there are even specialties within epilepsy specialists!  Dr. Anderson is in charge of the EEG monitoring unit.  She had one of the surgeons look into Elisabeth's case.  And, found her a new epileptologist!!

The surgeon gave me a call within two weeks.  Dr, Curry was all business.  His questions were direct and specific.  'Describe the seizures.'  "Does she have issues with speech?"  and so on.  I answered as best I could.  "yes, she could possibly be a candidate for surgery.  I'll have my secretary call and make an appointment."

And, we got an appointment for late January!!!  This was only 4 weeks after we met Dr. Anderson.  What a relief!!

I left 2 hours early.  Drove in circles through the medical center.  Took 1 1/2 hours to figure out a 30 minute thing.  I'm so directionally challenged.

We made it with 30 minutes to spare.

Dr. Curry came in, and asked the standard questions.  Case history.  Description of seizures.  Checked neurological signs.  Checked short term memory.  Pulled up the MRI.

He instantly knew what he was looking at. "See this area here?  This is her left temporal lobe.  It should like a cinnamon roll.  On the right side it does.  But, here, it's different."

I could see it.  Easily.  The difference was night and day, when you knew where to look.  Who knew!!

"She has a lesion on her left temporal lobe.  This is probably causing the seizures.  But, before performing surgery, we have to be sure.  We take surgery on children very, very seriously.  She will have to complete a series of tests. Then, a team of epilepsy Dr's, who meet very week, will look at her case, and discuss.  If it's unanimous, we'll proceed with surgery.  If they decide it's a good idea, surgery would have a very good chance of curing her condition."

He said we'd have to see our new epileptologist to look at the medications she's used so far.  If two medications have really not worked with this type of epilepsy, then there's only a 4% chance of any medication working.

Only 4%????  How long would we have languished with a neurologist, trying this med and that??

My mind was reeling with all the details.  It was going to be a long, busy semester, but my heart was also singing!!!!  Did I hear him say 'chance of curing her condition???!!!"

It was like we were in a different universe.  A parallel universe, where Dr's actually have answers, and can sort out her issues.  It was like losing the weight of the world.  Like I suddenly didn't have the whole burden of her care on my shoulders, when I didn't know what to do.

What a blessing!!  I wrote back Dr. Anderson and thanked her again for the help.  How wonderful that these brilliant people spent their entire careers sorting through epilepsy, and developing treatments.  And that they are right here, in our city, and we actually met one of them.

"Now unto him who is able to do exceeding abundantly, above all we could ask or think."  Ephesians 3:20

The Miracle

There about 2500 people milling around the lobby.  I was there with my husband and mother in law.
 We were all waiting to watch my daughter's last performance.  At least, I was.  She was one of the children in the back, but, to me, the whole entire production was just a backdrop for Elisabeth.  Since I'm her mother, I'm allowed to be biased.

Anyway, we had to have her there an hour early, so we had a lot of waiting to do.  We sat my mother in law on the comfortable couch, and proudly showed her Elisabeth's name in the program.  The lady sitting next to Grandma, asked us, "Is your child in the production?  Mine is, too!"

We figured out that our children were actually brother and sister on stage!  How fun!!

Of course, epilepsy is always on my mind.  Especially since Elisabeth had a 3 stage seizure two days before.  And, for some reason, I blurted out to a total stranger that Elisabeth had to be in this scene, because she has epilepsy. That she has a backup, because of epilepsy, and therefore had to miss one of her performances.

I started to explain to her what epilepsy was, and that her meds weren't working.

She stopped me.  "Does she see an epileptologist??

"She sees a pediatric neurologist.  Is that what that is?"

"No.  She needs to see an epileptologist.  That's a neurologist who specializes in epilepsy.  There's many types of epilepsy.  If she has a brain lesion, she could be cured.  If it's something else, we can sort it out."

"I AM an epileptologist.  My group is at TX children's.  You can google us. It's called the Bluebird Clinic for Pediatric Neurology.  My name is Anne Anderson.  Here's my cell number and my email.  When I get back from vacation, get in touch, and we'll see about getting you seen."

The bells started going off.  Time to go in and see our beautiful children sparkle and shine.

As we were walking in to the auditorium, it started sinking in what I had just heard.  There were specialists in epilepsy!!!!  There are different types of epilepsy, and maybe my Elisabeth could be cured!!!  Or at least understood and treated more specifically.   Maybe we could control them better??!!!  

That's when the tears started.  As I watched my beautiful, brave girl smile and move on that gorgeous stage, I realized that she just got a miracle.  That maybe she would have a normal life after all.  That  of all the people in that whole building, we sat next to the one person who could help us.  And we actually talked and exchanged information.

I thought of her sweet, trusting prayers, and then of this verse, another one I learned when I was young, "Call unto me, and I will answer thee, and show thee great and mighty things, which thou knowest not"

"Why?"

"Why do I have epilepsy??  I wish I never had epilepsy.  Why am I the one who got epilepsy??"

I have to think about what to say.  How does a mom answer that??  How can I  help a sweet little girl, who I've tried so hard to keep innocent and carefree?  

A child who now has to be brave, and face a possible lifelong disability. A disability that means she can't drive, shouldn't live alone, and could shorten her life span?  How?

I thought about my own childhood.  How my parents helped me.  

My father is a Presbyterian minister. He has spent his entire life serving others, studying, and teaching God's Word.  My mother spends her life helping him.  They filled our lives with love and care.  They sacrificed to make sure we had a good education.  And they taught us about God.

They taught that God is real.  That He hears our prayers and answers them.  That He even knows the number of hairs on our heads.  That every thing that happens to us is for His glory and our good.  Even the hard things.  Even the things we don't understand.

The first Bible verse my mother taught me was Psalm 56:3.  "What time I am afraid, I will trust in Thee."

"Honey, I don't know why you have epilepsy.  I do know things happen for a reason.  That God  hears our prayers, and wants us to trust Him."

"Remember the verse I taught you?   'What time I am afraid....?' "

" 'I will trust in thee'.  Can we pray for my epilepsy to get better?"  

And we did pray.  Every day.  So did our loved ones and friends.  

So, while I really don't know why she was the one who got this malady, I do know that it is her mountain to climb.  I can't fix it for her.  I can't make it better.  No matter how much I want to.  

But, I can teach her to trust.  To pray.  To hope.  To face life's problems with courage and faith.  To help and educate others.

She has already taught me so much.  The faith of children is a beautiful, powerful thing. Surely there will be an answer for her.  There has to be.  There must be someone out there with answers.  Who can look at an MRI, and know what it means.  Who can do more than prescribe meds that only work so long.  If only.....

How epilepsy affected Elisabeth

Katherine, Elisabeth's younger sister, loves dogs.  Obsesses about dogs.  By obsess, I mean she talks about dogs, watches informational shows about dogs, googles dogs, plays dog games, and pretends to be a dog.

She was princess when she was three.  When she was four, she became a dog.  She has been a dog ever since.  Her favorite book in the world, is, you guessed it, a book about dogs.  It has pictures and facts about more dog breeds than I knew existed.

One day she asked me "Mommy, do you think I'm part dog??  I love dogs, and I understand dogs, and I can see Elisabeth's seizures, like a service dog."

She was right.  The other thing in the world she loves most, is her older sister.  She follows her around, dogs in tow, morning, noon, and night.  And, she spots seizures.  Before I do. "mom, Elisabeth is having a seizure!!"  She is invariably right.

We all watch for them.  Elisabeth got feelings before some seizures.  She said it was in her heart, and made her feel like she wanted to hide.  The epilepsy community calls those auras.  6 or 7 times out of ten, the aura would become a seizure.  The other times, she'd run to a small, confined space.

I warned her teenage brothers, "If you ever see her running toward the stairs, or toward the street, grab her."

She never did that.  I told her to spend the day downstairs.  If she happened to feel funny while upstairs, SIT DOWN.  That happened once.  She did sit down.  Phew.

In the parking lot, she had to hold the cart, and I kept my hand over hers.  She thought that was so silly.  I knew what could happen if she started running.

She had to have her medication every morning and every night.  On time. Without fail.

She couldn't swim without extremely vigilant and close supervision.  Which was hard on her, because she could swim like a fish.

You see, I'm a numbers person.  I read statistics.  I research.  I look for healing methods and natural treatments.  While there are unbelievable numbers of treatments for autism, I couldn't seem to find anything for seizures.  At least, that seemed worth trying.  And statistics for epilepsy are not good.

2 children out of 100 with epilepsy will die each year from seizure-related accidents.  Children with epilepsy can die in their sleep.  Epilepsy is DANGEROUS.

So, I didn't let her spend the night with friends.  She had to have her sleep, so even sleepovers at our house were very rare.  She took all the bad news pretty well.  "Oh well, at least I can play in the sprinkler!"  "maybe we could have a playdate instead!"  "OK, mom, I"ll stay downstairs."  Sweetheart.

So, when the trileptil stopped working, and Katherine announced to me "MOM!!  Elisabeth is closed up in the closet!!   she's having a seizure!!!",  I was heartbroken when Elisabeth started crying, and asking me,

"WHY MOMMY??!!  WHY AM I THE ONE WHO HAS EPILEPSY??!!"

Fall, 2012, a reprieve

We started the trilepil late August, early September.  I remember the note to the ballet teacher, "She may be dizzy for a while, so if she needs to stop, that would be the reason."

I was actually amazed that her teachers were willing to work with her at all.  During the summer, she had several episodes toward the end of class.  Usually after a long jumping sequence.  I don't know if it was the heat, or the jumping, or just time, but Miss Beth got the best seizures of all.

She would email me and let me know.  Or tell me after class.  Always kindly.  Always just concern for her health.  She started researching as well as I did.  "I don't think they're staring spells anymore.  I think they're complex partial."

"she drooled a lot.  Maybe a cup."

"it lasted a long time, she tried to run.  I'm sorry, but I had to hold her tightly to keep her from running into a bathroom stall where I can't see her."

The knot would come back into my stomach.  Was I giving her enough to drink?  Was she getting enough sleep?  Was it my fault? What had we done in her past to cause this?  Did I eat or drink something wrong while pregnant?

It's so hard to see something wrong with my sweet baby, that I can't fix.  No matter what we did, she still had seizures.

So, it was such a relief to hear that another med would work better.  Maybe we just had the wrong one.  Maybe this one will work, and she's had her last episode of her life.  Hope.

And trileptil did work.  No more seizures!!!!  We had months of joy, where my sweetheart was happy and well and glowing.

She tried out for a production that fall.  It was a huge one, that raised millions of dollars for her ballet, so I warned her that epilepsy would probably mean a 'no'.  "It doesn't mean you're no good, or that they don't like you , honey.  It would just be because it's dangerous, and the other children on stage wouldn't know what to do."

My unstoppable girl tried out anyway. My sweet, brave little girl, who didn't give up or quit.  And she was beside herself with joy when she got a part!!!

So, that whole semester meant homeschooling, driving kids to classes, and taking her to rehearsals.  She was tired, but happy.  The joy was back.  The sun was out, and the birds were singing.

Summer, 2012, when we started medication number two

Since the seizures kept coming, we were scared of the neighborhood pool.  It was just too crowded to see Elisabeth every second.  Especially while we were also watching a crawling baby.  We tried tag-teaming, but just decided it wasn't worth it.  So, we got a water slide for the back yard instead.

It's Houston, and summer is totally unbearable without water.  It's just so hot.  So, we'd attach the hose, turn on the blower, and get the kids sliding. Some neighbor kids were here, adding to the fun.  Running around in the heat, and sliding in the cold hose water.  Grown-ups were talking, and trying to pretend it wasn't 100 degrees in the shade.

Elisabeth ran by me, into the house.  Slipped on the tile.  Got up and kept running.  Hid under the dining room table.  Talked funny.  I called the neurologist.  We upped the Kepra.  She got a few weeks off.  Then, the seizures started again.

Every time Elisabeth was deep in thought, or swallowing, it looked like a seizure.

"Are you OK?"  "yes, mom, I'm OK"

"Are you OK?"  "YES!  Why do you keep asking me that, silly mommy???!!!"

After we upped the dosage three times, she had a weird one.  She was sitting on the counter.  And yes, we knew that was dumb, but just forgot.  She pitched forward.  I grabbed her.  Thank goodness I was there.  She was heavy to me, as light as she was, when she was a deadweight.  She stood up and seemed like she was finished, then started seizing again.  This time she hugged me, mid seizure.  And started talking,

"I'm OK, mom.  I'm OK."

But she wasn't OK.  She wasn't there.  She was just repeating what I asked her morning, noon, and night.  She wasn't OK.

The neurologist ordered another MRI.  My girl who hates pain, and cries for needles, went and got another IV, and lay still for over an hour, in a cave, while a machine made loud noises.  She never cried.  Or complained.

The neurologist, Dr. Abid, discussed the results at the next visit.  She thought it looked normal, but said they couldn't tell for sure..  "Normal is good.  That means she'll probably outgrow it."  

Hurray!!!  Nothing is wrong with her brain!!!!!

But the seizures kept coming.   Elisabeth was feeling sick again.  It seemed to me like she wasn't even on medication.

Dr. Abid  had someone else look at the MRI.  "It's not normal after all.  There's still a possible swelling on the left side.  We're going to start her on Trileptil as well.  That works better for this type of epilepsy."

When Kepra stopped working

Life was good again.  My sweet girl was feeling good.  She had started eating again, and had a happy, pink glow.  She was still skinny, as you can see in the pics from that time, but definitely on the mend.  We finished up our homeschool year, and went on vacation.

My awesome husband is a vacation snob.  He likes to be comfortable.  We have a big family. This translates into house rentals.  He wants a nice, big house, but doesn't want to pay for it.  He somehow, over the phone, charms realtors into finding us virtual estates, with many bedrooms for a fraction of the asking price.  I don't know how he does it, but real estate agents all over the country love to find deals for him.

So, we were staying at a beautiful historic home in San Antonio, with a huge, heated pool complete with diving board.

OK, we thought it was heated. It wasn't.  It turns out older homes look great in pictures, but not everything works.  So, I got into the pool and got out.  So did the oldest son and husband.  I never even let the baby try.

But the kids, you know, the ones ages 6-12, didn't care.  They'd swim in the pool until they were blue.  If I'd let them.

Now, I knew Elisabeth had epilepsy, and that swimming was dangerous,  so, I watched her very closely. But she hadn't had a seizure since she started her med, so I let her swim.

She jumped in for the the thousandth time, then swam to the side.  She ran up the ladder, and then to me.  She said "um."  "um."  "a cat."  "a cat"  "where's the cat" "um".

She didn't blank out.  But she was talking funny.  "Honey, are you OK???"

"Yes, I just felt funny, so I had to get out."

The knot was back in my stomach.  "That was almost a seizure.  Maybe it WAS a seizure!!"

My husband, Scott, saw the whole thing.  "She was just cold.  Temperature changes make her feel funny.  That's all."

And it didn't happen again until after her appt the next week.

Dr. Abid said it might have been a seizure, she wasn't sure, but she'd up the Kepra to 6 mg., just to be sure.

And, after upping the med to 6 mg, she had another one.  A real one.  Within the week.  Except this time it was worse.  This time she drooled.

Her first neurologist visit

Elisabeth was having seizures more often.  Right after she had them, she would get sick.  Not just a little sick, but retching, crying, tummy bug sick.  She started being scared to eat.  She didn't know when she would feel bad, so she didn't want to eat at all.

Now, Elisabeth has her Daddy's long, thin genes.  So, she didn't have much padding to begin with.  But, whatever she had, she lost.  She got THIN!  Scary thin.

She looked fragile.  Her skin was translucent, her eyes had dark circles, and her bones were sticking out.  Think of pictures you've seen of refugees.  Or cancer victims.  She just looked very, very sick.

I was so glad we had set up an appointment with a pediatric neurologist so early in the process.  This neurologist was the only one at TX children's who could see her before summer. Now, we made the application in October.  That's how many children need to see these specialists.  We were grateful that anyone could see her by January, and jumped at the chance.

This specialist's office was in Sugarland.  If you see a map of Houston, it's about as far from our house as humanly possible.  It was an hour and 15 minutes away.  I gave us an hour and a half because I'm directionally challenged and tend to drive around in circles, looking for a new place.

Dr. Abid listened to our story, got a case history, and checked neurological signs.  Thankfully, Elisabeth could walk on her heels, hold her hands palms up, close eyes and touch her nose.

The Dr. then showed me the MRI pictures on her computer screen.

"See this area of her brain is darker than the other side.  This means she has a swelling in her brain.  It could be due to the seizure activity, or it could be something else.  We just can't tell yet."

A PROBLEM IN HER BRAIN????   Please no.

 Out loud I just said "Ok"

"We'll start her on Kepra.  It has very few side affects, and doesn't interfere with other meds.  We'll do a very low dose.  If it works, we can wean her in two years.  I know medication is no one's first choice, but seizures are dangerous, so there is no choice.  We have to medicate them."

I knew there was no choice.  My baby was blanking out and physically wasting away in front of my eyes.  I was so, very glad there was a magic pill to make her seizures stop.  And that it was fairly safe to take.

"Yes, Dr., of course."

"If the Kepra doesn't work, you can call me at this number.  We can adjust the dosage by phone, since it's such a long way to drive.  I'll see you again in three months."

We started the Kepra that night.  It was a miracle.  I got my little girl back.   No more sickness.  No more seizures.  How wonderful that something so easy as 4 mg of Kepra day and night can stop electrical problems in someone's brain!!

 And it did solve her problems for about 12 weeks.   Until it didn't.

When we knew there was really something wrong

It was ballet observation week.  My daughters look forward to this all semester. Their classes are upstairs, and parents aren't allowed.  Not until observation week.  That week, the whole family--brothers, dad, other sister, and mommy all drive downtown and watch them.  Every. single. class.

This year, Elisabeth had three classes a week.  She wasn't deterred by the fact that she had a new brother, 2 months old.  So, we all went.  New brother, tired mommy, little sister, and three kind guys.  She pointed her toes, and jumped and plieed through them all, while the pianist played beautiful classical music to match.

Baby Ben was wonderful.  He slept through two straight days, and opened his eyes on cue to the other adoring mommies and siblings before going back to sleep.

But on day number three, he wasn't cooperating.  He started screaming, right in the middle of her tendues, and I had to take him out.  She didn't miss a beat.  She knew I'd be watching through the window.

I paced the floor, soothed the baby, then realized something was going on.  The class was all still, and the teacher was looking at Elisabeth.  She was gulping.  Then, she ran out the door.  All the way to the bathroom, with the assistant running after her.

I ran after both of them.  "Elisabeth, why were you running?  Are you OK?"

"I'm fine.  I just felt like I had to hide."

"Maybe you should sit down awhile."

"I'm OK.  Please let me go back to class."

The knot in my stomach returned, only stronger.  After the class was over, and everyone had their pictures with the teacher, it was my turn.  I said the dreaded words "I think she may be having seizures.  Her EEG was normal, and we weren't sure...."

The sweet teacher said she had one last week, too.  They thought the same thing we did, Elisabeth was hot.  It must be a coincidence.  Sigh.

I told the teacher we'd keep her posted and left in a daze.

Downstairs my sweet mom friend was waiting.  'I think she's having seizures."

"honey, those ARE seizures."

That's when the tears started.  My friend was so comforting.  In her lilting spanish accent, she said  "It will be FINE.  She will be Fine.  We will PRAY for her.  I will PRAY for her.  A lot.  She will be fine.  You'll see."

Elisabeth's pediatrician saw her again.  She worked through lunch so it would be quiet, bless her.  She listened, wrote everything down, and wasn't as reassuring.  She went ahead and ordered the MRI, and said it's a good thing we got the appointment set up with the neurologist.

Some background on my Elisabeth Grace

This is Elisabeth.  The taller one, with her arm around her little sister, Katherine.  She's all dressed up for church, and taking care of someone else, as usual.

Elisabeth is my third child.  I had two boys first.  Don't tell them, but I was sure they were each girls.  I wanted a girl. My mom and I were very close. She's still my best friend.  We can talk about anything.  I wanted a girl in my life as well.  First came boy number one.  Of course, I didn't care when I held him.  I love him dearly. Then came boy number two.  He's become one of the great joys of my life.  I wouldn't give anything in the world for either of them.  But, when I saw ultrasound number 2 of boy number 2, I got a bit desperate.

It crossed my mind that I might NEVER have a girl.  A sweet little piece of heaven to dress up, and play tea parties with, and teach how to be a lady, and, hopefully be as good of friends one day, as my mom and I are now.

Well, God had good things for us, and baby number three was actually a GIRL!!!!!  What a joy!!!   My amazing husband actually agreed to the name I had picked out for her before we even met.  Elisabeth Grace.  She was always my very wanted, very precious, gift from heaven.

 From her very first breath, she brought us sunshine.  She was everything I dreamed of and more.  Not only was she beautiful, she was also sweet.  She smiled all the time.  She loved the whole world and everybody in it.

When I told her 'no', she actually listened!  Yes, those kind do exist, my angel proved it.

Sometimes, when I was watching her, reveling in her cuteness, and sweetness, and little baby brightness, I remembered my great-great aunt describing a gorgeous nephew of hers, who was born in the early 1900's.  He was always perfect, she said, with golden curls, just like Elisabeth.  A sunshine and a joy.  The family was terribly, terribly sad when he got a fever, and went to heaven at the age of seven.  She said that some children were just too good for this earth, and God took them early, so they wouldn't have to face any sorrows of life.

I actually got a sense of fear then, just remembering Aunt Marie's words.  Was this baby too good for this earth as well?  No, she was perfectly healthy.  Glowing.  We have antibiotics now.  She'll be fine.  And she was.

For nine straight years.  And two more siblings to follow.  Who she helped care for, like another little mommy.  She was my right arm.  My pride and joy.  So, when she said she couldn't talk, I just dismissed it.  She was the shining perfect one.  Right?

The next month, after her first seizure

I just couldn't stop thinking about my daughter.  Thankfully, I had distractions.  My sweet little weeks old baby kept me busy and tired.  So did the other four, whom I was homeschooling.  But, still, my OCD brain wouldn't let it go.  It was like a mom alarm was going off in my head.

I was remembering a time last spring, when she described a weird ballet class.  "I couldn't talk, mommy.  Miss Priscilla asked me a question, and I couldn't answer her.  She said 'fire hydrant??!!'  And everyone laughed.  But I wasn't trying to say 'fire hydrant,' mommy."  I told her she was just nervous and maybe stuttered or something.

 And promptly forgot about it, after all, I was pregnant with number 5, and driving kiddoes all over Houston, while trying to get in an education for them.  Much too busy to even think about what that meant at the time.

Then, two weeks before.  "mommy, it happened again.  I couldn't talk."  Really?  "when?"  "Right now, when I was upstairs."  "You must be tired, honey, it's OK."  That was about a day before baby Ben was born.

Now, all that came flooding back into my mind.  She didn't know she had blanked out.  Only that she couldn't talk.  She didn't know she was gulping.  Only that she didn't talk.  Were those other times seizures, too?  Were they seizures at all???  What kind of a mother was I???  I didn't even figure out my kid was in trouble until it happened right in front of me.  Guilt.  Lots of guilt.

Her wonderful pediatrician was very kind and reassuring.   She said it could be a seizure, but we really can't know for sure, unless we see more of them, or get them on an EEG.  She set up the order for the EEG, and  requested an appointment with a pediatric neurologist, but said it would take a long time to be seen.  Pediatric neurologists are scarce, and have to review the case, and agree to see the child.  So, we have to get in line, and it will take a while.

We'll get the process going, just in case, but we won't order an MRI unless we see another one, because they're expensive, and it may not be seizures at all.

We had to sleep deprive her for the EEG.  She loved it.  She got to stay up until 1:00 am, watching movies with her Daddy.  Who also kindly got up and drove her downtown to TX Children's the next morning at 5:00 am.  She wasn't loving it by then.  She was tired.   She did the whole procedure like a trooper, and came home and slept.

Did I mention my husband is a prince?  Well, he is.  He's a rock.

The EEG came back normal.  The pediatrician said sometimes a child has one incident.  If it never happens again, they aren't even labeled epileptic, and nothing is wrong at all.  It could just be because she was hot and dehydrated, and tired with the new baby upheaval.

A neurologist agreed to see her.  We made an appointment for January 8th.  Just in case.

I could breathe again.  Life was OK again.  The sun was out and we could hear the birds singing.

October, 2011, Elisabeth's first seizure. Or, the first seizure I saw

My fifth baby was 2 weeks old.  A gorgeous, perfect little bundle of cuteness.  Just like the others before him.  We were all thrilled.  And tired.  And the kids were stir-crazy.

So, my two girls, ages 9 and 6, were so excited when they realized it was neighborhood yard-sale day.  That day is one of the highlights of their year.  Really.  They would fill up their little purses with the change they collected from the counter, and go to the neighbor's down the street, who actually had the time and patience to organize their cast-offs, price, and sell them.

These smart, young neighbors had been up since 5:30 am, bartering and banking.  We managed to get out of the door about 11:00 am.  By that time, most of the good stuff was gone, the neighbors were closing up shop, and ready to donate whatever was left.

The sun was also almost right overhead, beating down the Houston heat.

Well, the girls were charming their way into lots of jewelry for a quarter, when I noticed something strange.

My older girl, Elisabeth, was doing something strange with her mouth.  Gulping and swallowing.  Over and over, but not moving anything else.  I got right in front of her.  "are you OK?  Honey? Can you hear me? Are you OK??"

She wasn't there.  Her blank eyes were staring straight ahead, while she kept swallowing.

I can see it like it was yesterday.  All of the sudden, she looked at me, and turned and ran to a chair.

"are you OK, sweetie??"

"um, a purse.  a purse."

"What honey?  A purse?  Are you OK?"

"I'm OK.  I couldn't talk for a minute. Just like last week, when I couldn't talk."

That was the first seizure I saw.

My mom was at the house, helping with the new baby.  I rushed my beautiful girl home.

"It was probably just the sun.  She was hot and dehydrated.  It was probably nothing."  We both said that to each other all day, while I felt a knot in my stomach get bigger.   It was something.  I started internet surfing.  Staring spell seizures.  Petit mal seizures.  Most kids start them for no reason and most kids outgrow them.

She had her first seizure appointment that next week.