Archive | Epilepsy

He Read to Me

The book is called “Tim.”

Tim is sad.  Tim sits.  A van zips in.  A kid is in the van.  Is the kid a pal?  The kid is Bill.  Tim and Bill are pals.

My heart filled with emotion lying next to David as he read to me, “tapping out” each of the new words.  As we read, he began to remember the new words and did not need to tap them all out.  This boy; this boy who had to re-learn to write his name; to re-learn to form letters.  This boy who could not control a paint brush because his hands shook constantly; who seized over and over and over again.  This boy who perplexed doctors, who lay on an operating table as they removed part of his brain.  This boy who lay in the NICU after surgery, his skin was so pale, his face swollen, his head bandaged.  This boy with a scar in his hair; this boy who was so brave.  This boy read to me tonight.

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No, David!

No, DavidHave you ever read the book “No, David!” by David Shannon?  The author wrote and illustrated the book when he was five years old.  Each page shows a picture of him doing something he was not suppose to do, with the words “No, David!”

I keep thinking about that book as David recovers at home from his surgery.

“No, David!  Please don’t climb on the counters.”

“No, David!  You cannot climb the tree.”

“No, David!  Please get off of your bike.”

“No, David!  We’re not going bowling or swimming.”

The doctors told me many times that I would be surprised by how quickly David would recover from his brain surgery.  I envisioned a quick recovery as two to three weeks of him sleeping most of the day, playing a bit with the other kids, but mostly just observing.  I could not have been more wrong!

We arrived home late Tuesday night.  David woke up at 7 a.m. on Wednesday with his older siblings.  He started bustling around with them like any other morning getting ready for school.  He asked if he would be able to go to preschool that day.  He started climbing the counters to get some dishes for himself.  He wanted to play baseball and golf.  Truthfully, I about died from anxiety!  I kept envisioning him accidentally getting whacked in the head during the excitement of being back with his siblings!

As soon as his siblings left for school, he walked back to his bed and slept for FOUR hours!  Then, he woke up and started playing again.  It was crazy!

I can’t believe how well he is doing.  It is difficult to keep him down when the other kids are at home.  He still tires quicker than normal and he’ll fall asleep within minutes of the house being quiet.  But, he is happy and quickly working up to his normal pace of life!

David has not had any seizures since his surgery.  He seems to be calmer than before, too.  The neurologist said he is not surprised that David is calmer.  He described David’s brain (pre-surgery) as a “fire storm” of electrical activity.  Now, David’s brain seems quieter.

David will stay on all of his regular anti-seizure medications for a long time (1-5 years) to make sure his brain stays seizure free.  If, over time, David stays seizure free and if his EEGs show that there is not seizure activity, then we’ll be able to possibly wean him from some of his drugs.  But we have a different boy than we had before surgery and we are SO, SO thankful.

We are thankful for modern medicine!  We are thankful for the prayers of so many; for the hand of God; for the miracles we’ve seen.  Mostly, we’re thankful to see a calmness in David’s eyes.

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Released from the Hospital

imageDavid was released from the hospital early this afternoon.  I find it amazing that only a few days ago doctors performed a major, life-altering surgery on him.  We met another boy in the recovery unit who had the same surgery as David on the same day as David.  (There are two pediatric neurosurgeons who perform resections.)

The little boy’s family is from Sacramento.  We played the “Do You Know” game and YES, we are friends with both of the people the dad knows from our town.  What a small world!  David and the boy from Sacramento walked up and down the little hallway today.  Two boys with shaved heads, horseshoe shaped scars on their heads, being supported and encouraged by loved ones to put one foot in front of the other.  A solemn and beautiful sight.

Before we left the hospital, David played in the activity room for THREE HOURS!  We loved seeing him play.  Then he fell asleep.  He slept most of the rest of the day.  But it was nice to see him have a burst of energy.

As we walked out of the hospital David said, “I was so brave!  They gave me a shot and I was so brave!”

Yes, David.  You were so brave.

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Removal of the Bandages

This morning, the doctors removed David’s drain and bandages from his head.  An emotional moment for all of us.

Visually, it took time for me to come to terms with what I saw.  My heart was heavy.  I watched other family members’ eyes fill with tears as they saw David’s head for the first time.  It was a reverent moment; looking at the incision, seeing the reality of what David went through just two days ago, feeling the significance of what that incision represents.

David does not want to see himself.  My brother and my nephew called to FaceTime with us today.  As soon as David saw himself on the phone, he swatted the phone away.

These are difficult things for a 5-year old to have to process.  His head is shaved.  He has a tough, 8-inch scar.  I think he looks beautiful.

David walked down the hallway for the first time today; daddy on one arm and Grandpa on the other supporting him.  He smiled today.  He ate food and kept it down.  He shot a few baskets into a basketball hoop from his bed.  Grandma showed him some magic tricks.  David smiled some more.

They plan on releasing David from the hospital tomorrow.  He’ll be tired, but his pain is controlled.  I think he’ll be glad to not be in the hospital anymore.  It’s amazing how quickly the human body can heal.

I’m thankful to see my boy smile today.  I love that boy.

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No More Sharks

I’m David’s paternal grandmother and a guest blogger at Welcome 2 Holland.  Yesterday, April 24, was not like any other day. It was a day of high emotion that I can only release through writing.

We were a brave little group traveling to the hospital at 6 am, but not as brave as David. His ability to live in the moment and trust the adults in his life is part of God’s provision. We waited, made small talk, and entertained David (and vice versa) before the surgery. We cried hard when they wheeled him away to surgery.

We ate breakfast while they cut into David’s skull. We checked email, played Uno, talked business, and hung on every text that came from the operating room. After four hours we cried again when Dr. Gonzales told us they’d successfully removed a rock-hard mass that was causing David’s seizures.

We gathered around David’s bed in the ICU and filled the room with our silent prayers of thanksgiving. David slept peacefully and looked angelic amidst the bandages, tubes, and machines. We didn’t have words to express all we were feeling. The unknown was now known.

This is David’s journey and I am humbled to be part of it. There are children who are sicker than David at the Cleveland Clinic, but there are none who are more precious or more loved than that little boy who just wanted the ‘sharks to stop biting his tummy.’

David, I think they got the sharks. Praise God!

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Post Surgery

One of my favorite books is “The Hiding Place” by Corrie Ten Boom.  The book tells of Corrie’s life during World War II.  For me, it is one of those important books I want my children to read and understand.

Corrie’s father often took her with him when he traveled for his watch business.  A beautiful interaction between Corrie and her father took place on a train when she was 10 years old.

And so seated next to my father in the train compartment, I suddenly asked, ‘Father, what is sexsin?’
He turned to look at me, as he always did when answering a question, but to my surprise he said nothing. At last he stood up, lifted his traveling case off the floor and set it on the floor.
‘Will you carry it off the train, Corrie?’ he said.
I stood up and tugged at it. It was crammed with the watches and spare parts he had purchased that morning.
‘It’s too heavy,’ I said.
‘Yes,’ he said, ‘and it would be a pretty poor father who would ask his little girl to carry such a load. It’s the same way, Corrie, with knowledge. Some knowledge is too heavy for children. When you are older and stronger, you can bear it. For now you must trust me to carry it for you.’

As I watch David laying in a hospital bed after his surgery, my mind keeps returning to those words from Corrie’s father.

“Some knowledge is too heavy for children.  When you are older and stronger, you can bear it.  For now you must trust me to carry it for you.”

The magnitude of what happened today weighs on my heart.  The surgery went well.  The surgeon said David did well.  No complications.  The tissue removed was notably bad tissue.  The surgeon is hopeful that this surgery will improve David’s life.  But David does not feel well.  The next week will be very difficult for him.

We never told David much about the surgery.  We simply told him that the doctors would fix some things in his head in order to help his tummy.  David never asked for more.  The simplicity of his trust in us humbles me.  He wakes up, tells us his head hurts, seeks comfort, we reassure him, he goes to sleep.  He doesn’t question “Why?”  He simply endures.

The scriptures often speak of being like little children.  I hope I trust Heavenly Father the way David trusts us.  I hope I can simply endure with patience without questioning “Why?”  I imagine, when I get to heaven, I’ll understand better the trials of this life.  But for now, I am thankful to a Heavenly Father who sent His Son to carry my burdens, to carry my son’s burdens.  I am thankful for Christ, who suffered our pains; who knows, truly knows what my son feels right now; who can comfort David with a comfort only Heaven can provide.  Yet, in His infinite mercy, allows me and our family to be at David’s bedside, doing all we can to help him to feel loved and to feel safe.

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Brain Surgery

I remember the first time someone talked to me about brain surgery.  Shortly after David received his diagnosis of epilepsy, the epilepsy nurse explained the treatment options available.

She mentioned brain surgery and that the doctors had already talked about David as a possible candidate for brain surgery.

“Wait.  What?  Did you just say brain surgery?  For my son?!”

We had an in depth discussion of how brain surgery is used to treat epilepsy.  Every few minutes I found myself thinking, “Am I really having a discussion about brain surgery for my child?”

A little over a year later, here we are.  The night before brain surgery.  Tomorrow morning, a neurosurgeon will remove a portion of my child’s brain!  Who does that?!

I feel like I have now become a “friend of a friend” or “someone I know.”  It’s always a “friend of a friend” who has something extreme happen in their life, right?  Or “someone I know” had a situation you only HEAR about.  But those aren’t real people, are they?

All of those people I’ve seen at the park or at a store who my instincts say are different than me because they look differently than me or because they are in a location that somehow separates them from me…all of those people are just like me.  Actually, they ARE me; people with lives and other children and jobs and school and homework and soccer practice.  They are parents who love their children, who want the best for them.  They are living life the best way they can.  They are simply dealing with challenges that look differently than my challenges.

This morning, we met with the neurosurgeon.  Brain surgery is fascinating.  Did you know they don’t CUT the brain?  They use suction to create a division of brain tissue.  He said brain tissue is like Jell-O.  In order to avoid bleeding, they suck it instead of cutting it.  Fascinating.  The brain also does not scar.  Once brain tissue is removed, a water substance fills in the gap.  Who knew?!  (Obviously, I never took anatomy or other related classes.)

imageThe spot they will remove tomorrow they described as an iceberg.  They can identify only the tip of the iceberg, but cannot see how deeply the bad brain tissue penetrates.  (In the picture, the arrow is pointing to the tip of the iceberg.)  They will remove 10% of David’s frontal lobe on the right side of his brain.  A water-like substance will fill in the space.  The type of lesion they are removing is called cortical dysplasia.  It is basically a malformation of brain tissue.  The only thing this type of lesion does is cause seizures.  They said there is a 70% chance that David can live a seizure-free life.  We’ll take it.

I’m thankful to live in a time of advanced knowledge and technology.  I’m thankful for the book “Gifted Hands” that helped me feel better about brain surgery.  I’m thankful for a husband who stands at my side as we face this challenge.  And I’m thankful for the courage of a 5-year old boy who trusts his parents; who will allow doctors to do what needs to be done; who helps nurses as they give him medicine; who hangs out with probes attached to his head without complaining; who prays that Heavenly Father will fix his seizures, trusting that He will fix them.

Here we go….

 

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Preparing for Surgery

Last week I rode my bike for the first time this year.  One of the first songs that played through my headphones was “Beethoven’s 5 Secrets” by The Piano Guys.  Go ahead and look it up.  I’ll wait.

Got it?  Okay.  Let’s ride together.

As I rode, feeling my legs pump faster and faster, harder and harder, every door in my heart burst open.  All of the emotions I’ve held back, every bit of grief and sadness and yearning for peace and attempts to stay calm burst free like the Hoover Dam breaking into a million pieces and flooding the land below.  I gripped my handlebars harder.  My body dropped closer to the frame of my bike.  Tears streamed down my face.  I cried out in complete anguish of emotion.  A hill came and I stood up.  I pushed my legs as hard as I could.  I pushed my heart to feel; feel it all.

I let my feelings flow freely.  I felt them as deeply as I could.  I cherished them.  The physical, the emotional, the spiritual all at once.  The blood pumping, my heart pumping; I felt power and love and peace.

I stopped at the top of the hill and breathed.  My heart open and my head clear.

The next song to come on…”I Will Survive” by Gloria Gaynor.

“At first I was afraid.  I was petrified….”  Okay.

I climbed back on my bike and started moving those legs.

“It took all the strength I had not to fall apart….”  (I may have fallen apart a few times in the past few months….)

“I will survive.”  Yes, we will.

My legs started movin’ and groovin’ as I rode.  Eight minutes of hearing “I will survive” over and over again goes a long way to help your outlook on life!  Thank goodness for an extended version of that song with plenty of repetition.  After those eight minutes, I was in a nice rhythm on the road.  The future felt sunnier, clearer.

Next song…my ipod was on random shuffle and I think Heaven may have intervened in the shuffling that day…”Happy” by Pharrell Williams.

By this point in my ride, I was on a rural road with a little creek next to me.  Ducks paddled happily along.  Birds flew by singing a spring time melody.  Trees blossomed around me.  I sat up straighter on my bike.  I smiled.  I thought of my family and our life.  The more I rode, the happier I felt.

Not only will we survive this, but there is much happiness coming down the road.

We arrived in Cleveland late last night and checked into the Ronald McDonald House (RMH.)  This morning, a boy who David played with last time we visited said to him, “Hi, Friend!  Welcome back!”  We are glad to be back.

We were suppose to meet with the neurosurgeon this morning, but they postponed us until tomorrow.  So, I don’t have any specifics yet regarding David’s surgery on Thursday.  We did meet with a pediatrician for a pre-surgical check-up.  Afterwards, David had some blood drawn.  The phrase “Much weeping and wailing and gnashing of teeth” appropriately describes that experience.

After we meet with the neurosurgeon tomorrow, David has another MRI and then a haircut.  He and Tyler will be twins!  Should be exciting.

I am thankful for the peace I feel about David’s surgery.  I am thankful for the RMH.  I am thankful for the ability we have to be at the Cleveland Clinic.  I am thankful to all of those watching our other kids while we are away.  I am thankful for a surprise visit last Saturday from two people who mean more to me than they will ever know; who strengthened my heart like no one else could.  I am thankful for God’s hand in our lives.

 

4

The Right Word

I don’t know what word exists to describe my feelings today.

Our neurologist in Cleveland, Dr. Lachhwani, called today to tell me about a change of plans for David’s surgery.  He told me that he and his team have continued working through David’s tests and decided there is no need for the SEEG.  They feel they can go directly to performing the resection surgery.  In other words, David only has to have one surgery instead of two!  The surgery he will have at the end of this month will be the surgery to remove the brain tissue they believe is causing his seizures.

Pause to let that sink in.

Still pausing.

My heart feels…um…

Stunned…I had no idea this was coming.

Overwhelmed…this changes so many things.

Awe…the doctors have been pondering David’s case this entire time; they didn’t forget about David just because he isn’t there.

Relief…David won’t have to go through the trauma of the SEEG.

Reverence…seeing the Lord’s hand in this.

Trepidation…they will perform brain surgery…BRAIN SURGERY…on our son…removing brain tissue!  Who does that?!  Isn’t that just in movies?!

Lifting of a burden…coordinating our stay in Cleveland and our kids at home just go a LOT easier.

Hope…the doctors are “humbly confident” that removing this specific area of David’s brain will change his life for the better.

Humbled…watching the hand of the God, feeling the prayers of others.

Gratitude…thankful to doctors, thankful to all who help us, and thankful to the Lord for watching over us so closely.

When we were in Cleveland, Dr. Lachhwani spoke about wanting to take time to think and to rethink about David’s situation.  He said that he and his team would spend hours analyzing every test, all of the data collected and every bit of information they had on David to make sure they arrived at the best conclusions for David’s care.  They REALLY DID continue thinking about David!  They REALLY DID work it over and over again in their minds and in discussions!  They REALLY DID continue trying!

Don’t we say, as parents, that no one is as concerned about our children as we are?  Tonight, I feel like our team of doctors in Cleveland is as concerned about David as I am.  My heart is spinning with appreciation, gratitude…deep, deep gratitude for their continued efforts on David’s behalf.

Tonight I am thankful for a team of doctors who understand how profoundly their jobs affect a little boy who lives on the other side of the country.  I am thankful for doctors who feel “humbly confident” that they have a plan that will help David, yet said, “We still need all the prayers you can offer for us.”  I am thankful for a team of doctors who are not afraid to call on the help of God to aid them in their work; who recognize that they can be instruments in His hands for the good of others.

Perhaps the right word is “Miraculous.”  I feel like I am part of a miracle.

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Medication – A Blessing and A Curse

MedicationsI’ve heard doctors say that people with epilepsy tend to have higher occurrences of aggression, hyperactivity, depression, suicidal thoughts and so on.  My question for those doctors is this:

Were the epilepsy patients in those studies TAKING anti-seizure medication at the time the data was collected?

Why do I ask?  David was four years old when he started taking anti-seizure medications.  Until that day, David would have been described as an observer, likes to play alone, stays close to either mom or dad, quiet, reserved.  David started his first anti-seizure medication on a Wednesday.  By Sunday, we were physically restraining him into his car seat in order to get a break from the destruction, the aggression, the hyperactivity.  He required two adults watching him at all times.

We switched to another medication Monday morning.  David’s grandpa stayed with us during that time.  He noted the immediate “improvement,” though slight, in David’s behavior when we switched to a different medication.  David still required one adult on him at all times, but he wasn’t quite as destructive.  I only went to the store three times in six weeks during that time because I couldn’t control him in public.  He punched me, screamed, scratched.  I had NEVER seen anything like it in my life.  (Don’t ask me what we ate…probably a lot of pizza and spaghetti.)  Yet, six weeks earlier, my child had been completely different.  He had been calm and reserved for four years.  Then suddenly, BAM!

Since then, we’ve been on a number of medications, each one with a little different twist to the behavior challenge.  Every time I bring it up to a doctor, ANY doctor, I get the same response regarding “these kids” and their “tendency” to have increased susceptibility to these erratic behaviors.

At times, I’ve wanted to scream, “NO! This is NOT my son!  This is not some behavior he kept hidden for four years that HAPPENED to appear EXACTLY the same time as he started his anti-seizure medications.  My son is not this boy.  I knew my son for four years and this is NOT who he is.  This is the medication talking.”

David currently takes anywhere from three to four medications to control his seizures.  He takes another medication to help him sleep since he wakes up with seizures in the night.  And, he takes an ADHD medication to counter the effects of the anti-seizure medications.

Maybe the doctors don’t think it matters whether these behavior challenges come from the medications or from some tendency found in epilepsy patients.  But, as a mother it matters to me.  It matters desperately to me.  A phrase you hear often among parents of epilepsy patients is, “I lost my child.”

What I want more than anything is for David’s seizures to be controlled and for him to be himself again.  I want him to be able to control himself.  I want him to be able to hold still.  I want him to be able to think clearly.  I want him to have the quiet in his eyes again.

I am thankful for behavior modification medications that help David calm down, that help David think more clearly, that help David be David again…almost.

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