We arrived home yesterday evening after spending a week at my parent’s home in CT. I wanted to update before leaving the hospital knowing it would be difficult once I was back with the rest of my crew. Unfortunately, IPhones have some serious issues in Manhattan. I went to update the blog and my phone completely locked up. I was convinced I was headed to the Apple store to trade it in when it miraculously began working again 45 minutes outside the city. Anyway I digress…Gabby is doing great!

Gabby was hooked up to a 12 lead EEG throughout the night prior to discharge. I was told to press the button if I saw any seizures. I said to the nurse half-kiddingly, “I better not see any seizures!” That night I had to press the button twice. My stomach was a pit of hopelessness and then I woke up. Don’t you love the relief that comes when you realize it was just a really bad dream! Just when you find yourself in the midst of complete despair and you have only to open your eyes and the nightmare is over. It was just a dream! Thank you, Lord! Gabby’s EEG looked NORMAL and we have not seen any seizures since surgery.

Gabby has recovered amazingly well. She came through surgery without a hitch. Her incision is healing beautifully. She has her healthy glow back and her endurance, even from last week, has improved immensely. She is eating better than she has in months and is trying new foods.

Gabby still LOVES the song “Big House” by Audio Adrenaline but just today she began requesting a new favorite. I have to admit I’m relieved.:) You can only listen to a song so many times. “Get Down”, also by Audi Adrenaline, is her new favorite. Yes, Gabby likes to rock out and her joy is contagious!

I have found the lyrics to this song to be sooo true. Especially the following excerpt:

In your weakness He is stronger
In your darkness He shines through
When you’re crying He’s your comfort
When you’re all alone, He’s carrying you

He has truly lifted us up and carried us through all of this!

I promise to post some video of Gabby “getting down”.:)

Love,
Kelly

It can be really difficult to get any sleep around here and Gabby looks just exhausted today. She had her drain pulled a short while ago and it required an extra suture to fully close the area. The incision looked good. Gabby tolerated this pretty well and is glad to have the large head wrap off as it was growing hot and itchy. She is presently getting some much needed rest.

Later today we plan to reattach electrodes to capture an EEG overnight. Dr. Devinsky would really like to see how surgery has affected the electrical activity and wants to have a new baseline to direct future medication decisions, etc. Please pray that the EEG would reveal perfectly normal activity.

We hope to be discharged sometime tomorrow. We will then hang out at my parent’s for several days to make sure Gabby is free of complications before heading back to NC.

Gabby amazes people with her personality and disposition even after everything she has endured. People and medical staff continue to be impressed by her resiliency. She taught a nursing assistant her dance to “Big House” yesterday in the hall way. She gave a hug to a very timid child with an infection of the knee. At music therapy, she shared her favorite version of “If You’re Happy and Know It” which is, “If you’re happy and you know it shout Amen!” She was teased by one of the fathers that she probably has a future in evangelism. I’m thinking her work has already begun. 🙂

We are surrounded here by people of many different beliefs yet we all share a common bond. We all have a suffering child that we love beyond comprehension. We have all asked the same questions. Why is this happening? Why my child?

Tears form in the eyes of many of these parents as they share their story. They tell about how they came to be on this unexpected journey. They speak about their fears, they wonder how they will endure this, they question where they will find the strength.

I begin to share my story…….and pray that they will one day know the Author. The One who never lets go. The One who knows every tear, wipes away fear, and gives strength to the weak. More importantly the One who gives hope to the hopeless.

Please continue to pray for Gabby’s recovery and for the continued absence of seizures.

Thank you!
Love,
Kelly

Gabby was up and ready to go around 7:00 this morning. She was a bit cranky until she received her Tylenol and then she was ready for walks and wagon rides. Gabby’s walking is much more steady today. She no longer wants to hold my hand for balance and she has actually tried to run a couple of times.

The MRI from the other day looks “perfect” according to Dr. Weiner. He stated that all of the tissue was completely removed and if that was the cause then we shouldn’t see any more seizures. Gabby’s JP drain is still in place and we are waiting for the drainage to become very scant and clear before pulling it out. Dr. Weiner wants to drain as much of the serosanguinous fluid as possible to reduce the risk of hydrocephalus. He shared that a large amount of debris in the CSF can “clog” the flow of spinal fluid in the brain. We plan to pull the drain tomorrow and then wait one more day to see if there is any leaking from the wound.

At this point it is looking like we may be discharged Saturday. There is debate over whether to complete one more overnight EEG once the drain is pulled to see if everything looks normal electrically. I need to speak with Dr. Devinsky more about this.

Thanks for continuing to walk beside us on this journey.
We pray Gabby’s recovery will continue to go well and I’ll update as she progresses.

Love,
Kelly

Gabby continues to do well. She ate all of her mac n cheese last night and polished off another chocolate milk before heading to the playroom in her red wagon to play with a few toys. When we returned she took her medication and settled in to watch some Elmo and Abby Cadabby which eventually put her to sleep.

She didn’t have Tylenol before bed and woke up at 1:00ish with pain, fever, and an itchy hot head. We gave her Tylenol and benadryl and then she said “Eat!”. She drank more chocolate milk and scarfed down at least 6 packages of saltines. I think the steroids are kicking in. 🙂

This morning I began giving her a bed bath and she became very cranky and irritable again which I assumed meant she was hurting. After giving Tylenol she was in much better spirits. She ate a waffle, cheerios, and washed it all down with more chocolate milk.

She is presently watching cartoons with Elmo and looks like she’s getting sleepy.

I’ll update more later.
Love,
Kelly

Gabrielle seems to be doing really well today. She went for a wagon ride around the unit and then walked from her bed down to the PICU entrance. When I tried to bring her back to our “pod” she resisted and so we went and hung out in the solarium for a while for a change of scenery.

She was wheeled downstairs for an MRI around 1:30 and they gave her a little sedative to help her lie still for the study. When we returned to the floor she was allowed to receive a regular food tray. She ate a few fries and downed almost all of a chocolate milk. I cut her off fearing she might get sick if she didn’t proceed more slowly. She then fell asleep and has been resting comfortably for the last two hours.

She has had most of her lines removed today and I’m praying she continues to make good progress in her recovery.
I’ll update again tomorrow.

Love,
Kelly

Gabrielle had a pretty good night here in the unit. She rested comfortably with just Tylenol for the pain. We are trying to avoid narcotics as last time they seemed to cause nausea.

We had some friends from North Carolina crash our roof her in NYC which made for a very pleasant evening. They didn’t carry me on a mat or anything (Mark5:1-5) but they did drive all the way to NY to show their support and brought dinner, drinks, and dessert. Thanks Dave and Bobby for showing us the love of Jesus.

Gabby was wide awake at 4:00am after we changed her linen and gave her some medication. She asked for her siblings by name, she pointed to her head wrap and stated she was hot. She saw my iPhone and requested her favorite song. She sang along to the music and fell back asleep with the music playing next to her ear. She waved hi to the doctors that came by this am and is generally behaving in a very encouraging manner.

She will go for an MRI today because they held off on doing one after surgery yesterday.

I’ll update later.
Thanks for all of your comments, tweets, and messages!
Love,
Kelly

Dr. Weiner just came out to let me know they are closing. He said Gabrielle tolerated the entire procedure very well. He said there was very little bleeding. He removed any suspicious tissue that remained. He removed an area in the right frontal region, the amygdala, and a little tissue that was lying over the thalamus. I asked if there were any obvious areas of connection and he said you remove the tissue assuming it is connected. He stated that he aggressively removed any questionable tissue.

Presently they are working on a titanium mesh closure to avoid leaving behind any soft spots like Gabrielle had previously. Surgery should be complete within the hour. She will have a post-op MRI and then head to the ICU.

I’m praising God that Gabby has been safely carried through another brain surgery. Please join us in prayer that she would avoid any post-op complications.

I’ll update later tonight.

Love,
Kelly

We arrived at NYU around 6:20 this morning. They took Gabrielle back to pre-op holding almost immediately. We completed all of the pre-op paper work and vitals while Gabby slept in my arms. She awoke right before we headed down for a presurgical MRI. She was in a very happy mood and kept asking to go to Mimi and Poppy’s house. We went into the MRI room and they put her to sleep in my arms. She fought this process for about a minute and
impressed me with her feistiness. She was kept under and delivered to the OR suite where I kissed her good-bye and spoke with Dr. Weiner briefly.

The surgical procedure itself began at 11:00am. Dr. Weiner expects to finish around 3:00ish. He will be focusing on the right frontal region where there is some residual tissue that may harbour a missed electrical connection.

This is it. This “redo” will be our final attmpt to stop Gabrielle’s seizures. I explained to Gabby that, “The doctors just need to make a “boo-boo” on your head to stop the seizures and then we’ll go visit Mimi and Pop.” I hope and pray that this is in fact the case.

I have learned a lot about faith over the last two years.
Faith in the midst of suffering. Faith in the midst of heartache. Faith in the midst of death.
Faith when God’s will is carried out instead of my own.

Lord God, I ask you to move this mountain from our lives in the name of your son Jesus. I ask with the faith of a child knowing without doubt that you alone are fully capable of healing our daughter of these debilitating seizures. And Lord, I ask that if this is not your will that you would provide us with all of the strength and endurance necessary to continue on this journey.

I’ll post as I know more..
Thank you for all of your support, prayer, and words of encouragement.
Love,
Kelly

Surgery is scheduled for Monday Sept. 14th. Dr. Devinsky and Dr. Weiner presented Gabby’s case at neuroconference where 22 doctors unanimously agreed that Gabby is a surgical candidate. They feel the EEG data, presentation of seizures, and questionable area on the MRI give a compelling reason to go back in and make a final attempt to stop these seizures. Dr. Weiner plans to remove any remaining tissue on the right side effectively turning her functional hemispherectomy into a complete anatomical hemispherectomy. Dr. Weiner will also inspect the questionable area on the MRI for any further connection as well as reassessing all other areas of disconnection. This surgery should not leave Gabby with any further deficits. There is always the risk of nerve damage, stroke, hydrocephalus, and death but it is our prayer that she will come through this without any complications. This surgery will be one stage and should involve a 4-5 day hospital stay.

We are in the process of figuring out the logistics of getting Gabrielle to NYC for pre-op testing and then back again in a few weeks for surgery. At this point we are thinking Duff may stay here with the other children while I fly up to NY with Gabby for testing and surgery.

Gabrielle has felt pretty good over the last week since her discharge home. The doctors increased her dosage of Klonopin at night which really helped reduce the number of seizures we were seeing. She was even able to go to her friend Katie’s Abby Cadabby birthday party. I included the picture above from the party which shows Gabby dancing to her favorite song “Big House”. Thanks Julia! It was just precious to watch Gabby go through her gift bag on the way home. She excitedly pulled one item out of the bag at a time, had me identify it, smiled with glee, and then carefully set it aside so she could reach in for the next goody.

Unfortunately Klonopin is a medication that you quickly gain tolerance to and we are already beginning to see more seizures again. Gabby began clustering yesterday morning and I administered diastat to stop the onslaught. So far this morning she seems good. We are just taking one day at a time…..

I’ll update as we know more.

Love,
Kelly

We just spoke with Dr. Devinsky, Gabby’s neurologist. He feels pretty confident that these seizures are still coming from the right hemisphere. He stated that if you asked any epileptologist, looking at Gabrielle’s physical manifestations, where these seizures are coming from they would all agree they appear to be right-sided. He said the EEG data coming from the midline isn’t too surprising given the disproportionately small amount of tissue on the right compared to the left. He said if we saw seizure activity clearly coming from the left then he would be concerned. Dr. Weiner (Gabby’s neurosurgeon) and Dr. Devinsky agree there is a small questionable area on the MRI that could be a connection. Dr. Devinsky said it only takes about 100 missed fibers to result in the return of seizures like Gabby is having. Dr. Devinsky would like to present her case to about 25 doctors at the next neuroconference to see if they agree with his recommendation for more surgery. Dr. Devinsky feels are best bet is to go back in and remove any remaining tissue and obviously sever any missed connections.

We still need to speak with Dr. Weiner and get his opinion. We also need to discuss the risks of going back in a third time. Each time they open Gabby’s head back up the percentages for potential complications increase. Please join us in prayer that God would once again orchestrate all of this.

I will update as we learn more…
Love,
Kelly

P.S. I’m thinking Gabrielle will probably be discharged sometime today.

Gabrielle and Duff arrived safely in NYC Wednesday afternoon. They were admitted into the hospital by dinner time and had all of the electrodes cemented on before bedtime. For the first time Gabrielle really disliked this process.

Thursday they were able to capture 8 seizures all of which presented the same clinically as well as electrically. They are coming from the parasagittal region which is basically over the midline region of the skull. The doctors are unsure of how to interpet this data. They are seeing seizure waves in the left hemisphere but aren’t sure they’re actually originating on the left side. They say because there is such a small amount of tissue remaining on the right side, the amplitude is much smaller compared to the left, which can make it “appear” like the seizures are actually originating on the left.

The neurologists reduced Gabby’s Depakote because it has the reputation for causing an echo effect on the EEG. The doctors want to collect more information over the weekend and put their heads together on Monday in an attempt to decipher the data they have.

I’m scared. I feeling like I’m waiting for someone to deliver a sentence that will foretell our daughter’s future. These seizures are nasty things. What will they rob her of this time? At the same time, I know God is in control even now. I know He knit Gabby together just the way she is for a reason. I know none of this is some cruel mistake. If I could just see all of this from God’s perspective I know it would make perfect sense. I just need to continue to trust God. After all, He declares in Jeremiah 29:11 “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.”

This journey of Gabrielle’s is part of something bigger. She is in New York right now because that is where God wants her. If you know Gabby then you know she has never met a stranger. She runs up and demands a “hello” from anyone she meets. She always manages a smile and is the first to give a hug to someone in tears. From her perspective, she never has a bad day. She is the first to start dancing when the music plays. “House Mama! House!”, is what she begs of me. She wants me to turn on her favorite song so she can jump and twirl around. Here are the lyrics that she dances to:

“Big House”

I don’t know where you lay your head
or where you call your home
I don’t know where you eat your meals
or where you talk on the phone
I don’t know if you got a cook
a butler or a maid
I don’t know if you got a yard
with a hammock in the shade

I don’t know if you got some shelter
say a place to hide
I don’t know if you live with friends
in whom you can confide
I don’t know if you got a family
say a mom or dad
I don’t know if you feel love at all
but I bet you wish you had

Come and go with me
to my Father’s house
Come and go with me
to my Father’s house

It’s a big big house
with lots and lots a room
A big big table
with lots and lots of food
A big big yard
where we can play football
A big big house
Its my Father’s house

All I know is a big ole house
with rooms for everyone
All I know is lots a land
where we can play and run
All I know is you need love
and I’ve got a family
All I know is your all alone
so why not come with me?

She dances with so much joy……it’s like she already knows there’s a better place waiting for her some day…..her Father’s house.

I’ll update when I know more.
Love,
Kelly

Gabrielle is still having seizures. We reached the maximum dosage of Trileptal and then started transitioning her onto Depakote this past Thursday. She has had about 50 seizures since we began adding the second medication. They are really beginning to affect her daily routine. She wakes up most days and immediately begins having seizures. The seizures and medications completely wipe her out and she has been taking 4 hour naps. While she is awake she has been less active than normal. Her left arm which is already hemiparetic has grown increasingly toned with the return of seizures. She is no longer able to flex and extend her arm.

Dr. Devinsky thought it would be best if we could head up to NYU this week rather than waiting for our Duke admission date next Wednesday. Duff will be leaving to take Gabrielle up to New York sometime in the next 24 hours. She will have a video EEG completed to determine where the seizures are stemming from. There are basically three possibilities: 1(They’re coming from the left side(good side) 2)They’re coming from the remaining tissue on the right side and a small connection was missed or 3)They’re coming from somewhere deeper in the brain. Please continue to pray for our sweet Gabby.

We will keep you posted.
Love,
Kelly

Gabrielle continues to have seizures. We have captured several of these episodes on video. It is very sad to watch Gabby have a seizure and breaks my heart but I'm putting it "out there" to help other parents and to increase awareness. If you’re interested in viewing:

Last Saturday Gabby’s neurologist, Dr. Devinsky, recommended we try increasing the Trileptal a bit more over a few days. We made the first increase last Saturday and then increased the dose again on Wednesday. Gabby tolerated the increase well but unfortunately it hasn’t helped the seizures much as of now. She had 18 seizures Saturday and 3 yesterday. I’m communicating with Dr. Devinsky via email right now and we’re in the process of choosing a second medication to add to her regimen. Dr. Devinsky continues to impress me. This is the second time he has helped us out while on vacation.

My hopes of setting up an ambulatory video EEG were squashed. Raleigh Neurology no longer offers video capabilities with their ambulatory EEGs and at Duke I would have to wait until September to schedule an ambulatory so we opted to have her admitted for an inpatient VEEG on August 19th. This seemed a little far off but we grabbed the date realizing Duke would be way more convenient and we could always run up to NYU before then if needed.

We are very much in a waiting mode right now. Waiting to see if the meds help. Waiting to find out where these seizures are coming from. Waiting to find out if surgery is an option. Waiting on God.

I love the lyrics to John Waller’s song While I’m Waiting:

I’m waiting
I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait

I’m waiting
I’m waiting on You, Lord
And I am peaceful
I’m waiting on You, Lord
Though it’s not easy
But faithfully, I will wait
Yes, I will wait
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve you while I’m waiting
I will worship while I’m waiting on You, Lord

So I will continue to wait and I’ll upadate when we know more.
Thank you for your continued prayer!
Love,
Kelly

Gabrielle went up to NYU for a video EEG in March because we were seeing some small episodes that looked like seizures. We were not able to capture any seizures over the 4 days during which she was hooked up. The neurologists did see some right sided spiking in the disconnected occipital area. We adjusted her medication during this visit and she came home on a slightly increased dosage of Trileptal and we took her off of the Lamictal.

For the 3 months that followed Gabrielle did really well and we didn’t see anymore suspicious activity. Then in mid June we began seeing some seizures again and after about a 2 week period she was experiencing 1-3 per day. We increased her Trileptal more after consulting with her neurologist and they dropped down to 1-2 per week. This past weekend however the seizure monster returned with a vengeance and she had a total of 17 seizures over the weekend. Monday, Tuesday, and Wednesday we had a reprieve but then yesterday and today she had 15 more.

The seizures we are seeing all look the same. They all involve right eye twitching/blinking. They last 15-45 seconds. I have begun using the following application to track them: http://www.seizuretracker.com We had her Trileptal levels drawn Wed. which came back at 32 which is a good therapeutic level. We are waiting to hear back from her neurologist Dr. Devinsky about increasing the Trileptal further or adding a new medication. I am planning to try to get Gabrielle scheduled for an ambulatory EEG as soon as possible. Basically I will bring her into Raleigh Neurology or Duke and have her hooked up and then bring her home for monitoring. They even offer video capabilities for these at home EEGs now. I was reading about it on the following blog: http://jackson-allen.blogspot.com/2009/07/at-home-eeg.html

So in a nutshell we will try to stop the seizures with some med changes and capture some on the EEG so we can get a better idea about where they are originating.

On a happy note, developmentally Gabby has been doing well. Her speech has really taken off over the last several months. She is using two word phrases more and more and she is beginning to vocalize her needs and wants without needing to be coached. Some of her favorite words right now are: seagull, eat, awake, sleep, book, Mimi, Poppy, house, home, and hot cocoa (She is convinced the large cup of coffee that I consume each morning is really hot cocoa.:) Her receptive language has also improved greatly. She is able to follow two step commands and demonstrates understanding of a growing number of things. She is sleeping in a twin bed and is able to climb off of the bed unassisted and into the bed with the help of a stool. She can walk up and down stairs if a railing is present (and a spotter). She continues to love books and can point to and identify many different objects. We watched a movie together Sunday and I was amazed by how many things she was able to identify. The main differences I am noticing with the return of seizures are: acting spacey at times, tired, clingy, decreased attention span, more wobbly at times.

Please join us in prayer that Gabrielle would continue to move forward and that we can regain control of these nasty seizures once more.

Thanks!
Kelly

I just attended a wonderful women’s tea over the weekend hosted by some ladies from church. I was asked to share about my journey over the last two years and thought I would include my ponderings here on Gabby’s blog.

God has taken me on an amazing journey over the last 2 years. Ironically my journey began days after I attended a women’s bible study. A bible study during which we were encouraged to tell about a time in our life when we had an enormous gray cloud looming over our head, a time of sadness and gloom, a time when we were completely downtrodden. I honestly shared that I hadn’t yet experienced such a time but knew a trial or trials would certainly come at some point in my life. It seemed like days later that our life would be turned upside down. Our youngest child at the time began having seizures and this would be the beginning of my journey.

My journey would involve many heart wrenching days. Days when I would hold my seizing daughter in my arms and sob. My journey would lead me to many unexpected places. Places filled with sadness and suffering like the PICU of Duke hospital where we shared a room with a 7 week old infant who had been ejected from his car seat in a motor vehicle accident. My journey would bring unexpected people into my life like a family that had recently lost their 5 year old son in an accident and a 12 year old that survived a 13 story fall from a building. My journey would forever change me.

As I reflect back over this time there were four instances when God communicated to me incredible life changing lessons. The first of these was a lesson in trust. You see my daughter had a malformation in her brain and we learned the likelihood of medications controlling her seizures was very small. We learned her best chance for recovery would be surgery if she happened to be a candidate. So as I drove home from an MRI which would be the first of a series of tests to determine her candidacy for surgery the knot formed in my stomach and worry about my daughter’s future flooded my mind. It was then that the tractor trailer smashed through the median, jack-knifed across four lanes of oncoming traffic, and erupted into flames. My car seemingly steered itself past the fiery wreck and into a grass field moments before the truck would explode. It was as though God spoke to me that day and said, “Be still Kelly and know that I am God. None of this is meaningless. It is all happening according to my plan.” I should have died that day. We should have died that day. He had kept us alive for a reason, a purpose, it was not our time.

The next lesson of my journey would take place at Duke Medical Center as I sat by my daughter’s bed. It had been 2 or 3 days since her first surgery. The surgery that we hoped would stop the seizures and it was then that I saw her first post-op seizure. I went to Gabrielle’s side and then slumped back into my chair. It was then that God spoke to me through the words of John Ortberg. Here are the words that lay on the page before me when I opened my book:

“Why does something like this happen? I don’t know. I only know that ultimately, the choice everyone faces is the choice between hope and despair. Jesus says, “Choose hope.” Will you keep going when you don’t know why? When you can’t get any answers that would make the pain go away, will you still say, “My Lord,” even though His ways are not clear to you? Will you keep going with all the grace and grit and faith you can muster and live in hope that one day God will set everything right? Will you trust that God is good?

God wants greatness of soul-people who will endure, wrestle, persevere, refuse to quit, and cling to His goodness even when there is much they can’t see clearly.” Wow. My discouragement melted away and was replaced with new hope. This was my lesson in hope.

That first seizure I saw in the hospital would be the beginning of an onslaught of abnormal electrical activity. Gabrielle’s seizures would again worsen. We began investigating whether she would be a candidate for a very radical brain surgery. It is difficult to describe my faith during this time except to share the lyrics from a song by Mark Schultz which seems to capture my emotions. It is called He’s My Son:

I’m down on my knees again tonight,
I’m hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I’ve done all that I can do myself
His mother is tired,
I’m sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he’s not just anyone, he’s my son.

Sometimes late at night I watch him sleep,
I dream of the boy he’d like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He’s so tired,
And he’s scared
Let him know that You’re there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he’s not just anyone, he’s my son.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he’s not just anyone.

Can You hear me?
Can You see him?
Please don’t leave him,
He’s my son.

It was during this time that God granted us a miracle and thereby renewed my faith. He stopped Gabby’s seizures for 4 1/2 months. You see we gathered around my daughter one night and my dad led us in prayer. He prayed,”Where two or three have gathered together in My name, I am there in their midst.”Matthew 18:20 He also said “Your word says that if we ask for things in the name of Jesus, that they would be granted to us. So that’s what we’re doing. In Jesus’ name, we’re asking you to heal Gabrielle.” Beginning the next day she had her first seizure-free day in months. The doctors could not explain it. My faith soared. I was reminded, in a very tangible way, exactly how mighty our God truly is.

My final lesson would be the most difficult. It would be a lesson in surrender. Surrender is the most difficult of these lessons to grasp because it requires that you already have at least a rudimentary understanding of the first three lessons. Without trust, hope, and faith surrender becomes impossible. I would have to leave all stubbornness and resistance behind and surrender myself. At this point I found myself within the walls of NYU medical center. Gabrielle had already endured the first two stages of surgery. She still had electrodes in her brain measuring electrical activity and we had one more day to wait for the final stage of surgery. I left the PICU for the first time in days and went downstairs to update our blog. It was then that I realized the impossible decision that lay before us. Do we close our daughter’s head up and risk the return of seizures or remove the entire right hemisphere of her brain which would result in severe right-sided paralysis? I began crying and praying. Lord, I said please make this decision for me. You who knit Gabby together in my womb. You who knows every hair on her head. You who placed every star in the sky. Not my will but yours be done. I then wrote the following post:

The plan for tomorrow’s surgery is still up in the air. We have not seen any seizures since the resection a week ago. Gabrielle has been taken off all of her anti-convulsants to see how the spiking over her motor-sensory area responds. The doctors are hesitant to remove such an important area if the seizures have stopped. The concern is that spiking could lead to the return of seizure activity in the future. If we see seizures in the next 24 hours we will proceed with further resection if we do not then we will proceed conservatively and remove all the grids and close her up.

This decision is obviously in God’s hands. So many bible verses have flooded my mind over the last several days. Among these:

Proverbs 3:5
“Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.”

Matthew 6:34
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Philippians 4:6
“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”

Psalm 46:10
“Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”

And so I am constantly reminded to seek God, trust God, and worry not because He is Lord and He knows the path we should take. So we will sit in our room the next 24 hours continuing to wait on God. Waiting for Him to reveal His decision to us and praying the peace that passes all understanding will be ours.

When I returned to the PICU we had our answer. Gabrielle had 3 seizures in the time I was gone and 11 more that followed. God had faithfully answered my prayer.

My journey to grow in God’s image continues. I have no idea what tomorrow holds but I know God is faithful and He will walk me through any storm that comes my way and I know He will continue to amaze me.