Four Years Seizure-FREE

Prayer Blankets

 

He carried us through the darkest of valleys.

He never left our sides.

He gave us peace when it surpassed all understanding.

He provided hope when despair was our only other choice.

 Sleepy Time

He renewed our faith with miracles when we struggled to trust that His ways were good.

He  tested our faith, strengthening it and drawing us closer.

He provided the very best doctors, so dedicated and determined to help us.

He taught us all about surrender, and His amazing faithfulness.

 PICU

 He allowed me to see things from His Heavenly perspective for the very first time.

He filled me with faith over-flowing.

He gave me visions of weightlessness, soaring higher as all doubts were erased from my mind.

Gabby and Elmo in PICU

Today, I am praising God.

I mean really praising Him with all of me.

When my mind fast-forwards through our sweet daughter’s life, I literally begin to sob with thankfulness.

Four years ago today, I was back inside dreary hospital walls.

I had just left my Gabby’s side, gurney rolling back into the operating suite for a fifth surgery, when I prayed this:

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.

 

Immediately post-op

I waited.

I waited for Him to reveal His will for my daughter’s future.

And do you know what?

He did it!!!!

Despite the littleness of my faith, He moved the mountain.

Four years ago today, He removed seizures from our lives.

Why He chose to bless us and to love us in this radical way, I can not fathom.

 

 Post-op Wagon Rides

 

Perhaps to remind us of the power of prayer.

Perhaps to give us a fresh beginning.

Maybe to help us comprehend all over again that we do indeed serve the same amazing God of the bible…

 

Hamming it up!

A God of miracles,

a God of love and mercy,

and a God who never leaves us nor forsakes us.

 

Choo Choo!

 

Through Him all things are truly possible!

His gifts have been so numerous, my heart nearly bursts with joy and gratitude.

 

Our daughter walks.

 

Sprayground2

 

 

 

 

 

 

 

 

Sprayground

 

Sprayground3

 

 

 

 

 

 

 

 

She talks.

Princess 1

 She hugs and kisses.

Eskimo Girl

She runs, hops, and plays.

Gabby in a Tube

She reads and writes.

Are You My Mother? 2

 

Gabby's schoolwork

She counts and adds.

Gabby at Work

She dreams and shares.

Princess 2

 

“Do you know what I want to be when I grow up, Momma?” Gabby asks.

 

Gabby Reads!

“A teacher,” she says.

 

I’m overwhelmed, Lord.

May we never forget what Your hand has done in our lives.

 

Are You My Mother?

 

Look how far You have faithfully carried us.

We have come so far.

She has come so far.

 

Four Seizure-Free Years full of the most amazing blessings and miracles.

How can I ever thank you, Lord?

Go and tell others of my never-failing, perfect love.

 

Comments

  1. My 2 month old baby girl was just diagnosed with focal cortical dysplasia. I would love for you to email me so I can learn from your experience. This post was such an encouragement to my heart. Thank you for using your story for His glory.

  2. Becky Hicks says:

    My granddaughter has corticol dysplasia she is only 20 months and has already been on several medication with no relief and just 4 days ago they did surgery and removed a large section of her right frontal lobe. my daughter is Magan this is her first child and she is overwhelmed, devasated and disappointed with every seizure she sees. Eisley is my granddaughters name she has petite mal drop head seizures sometimes up to 20 or more per day. I feel if my daughter (even myself) would have others to talk to with this same condition it would help. My number is 903-440-5696. There is no history of seizures in our family or Eisley’s dad side of the family, so all of us are learning together, We live in Texas about 2 hrs from Ft. Worth, which is where she had her surgery. Cook’s Children’s Medical Center in Ft. Worth.

    Becky Hicks

  3. Becky Hicks says:

    What type does Gabby have and what surgery did they do on her?

    Becky

    • Hi Becky, I am so sorry to hear about your granddaughter. My Gabby also had cortical dysplasia that appeared to be confined to the right frontal lobe. Her first surgery also removed a large portion of the lobe, all the way up to the sensory/motor strip. She began having seizures again just a few days after that surgery.We went back into the hospital to undergo more testing, realizing a hemispherectomy might be her only chance at seizure freedom. She was sicker than ever. We came home for the weekend before we underwent more testing the following week and my family prayed over her for healing. Gabby was then seizure-free for 4 1/2 months. During that time she made great developmental strides. She learned to sit, stand, cruise, and began saying a few words. When the seizures returned we took Gabby to NYU where Dr. Devinsky and Dr. Howard Weiner used a three-stage surgery to really identify where the seizures were originating from. We hoped they would discover one or two small areas, allowing us to save the remaining hemisphere. Unfortunately the testing demonstrated that pretty much her entire hemisphere was affected. She had a functional hemispherectomy completed when she was 21 months old. Six months later she began seizing again and a tiny connection was discovered as the source. She underwent a small revision surgery and has been seizure-free for 4 1/2 years. Please let me know if I can answer any more questions. I would be happy to be in touch with you and help you in any capacity that you wish. Praying for the very best outcome for your sweet granddaughter.

      • Becky Hicks says:

        My daughter and son in law are still exploring every other options before doing the Hemispherectomy. My granddaughter is 2 /12 now and still having seizures everyday. However my daughter is a nervous wreck about doing the surgery and she will not recover well. Motor wise Eisley is normal and very active so disabling her would be devastated. I wish doctors had more of a guarantee but I understand why they won’t say yes I guarantee it .
        Becky Hicks, grandmother

      • Becky Hicks says:

        How is Gabby today? How old is she and how is she doing cognitively?

        • Hi Becky,

          Gabby is now 8 years old and she has been seizure-free for 5 1/2 years. She lost the use of her left hand and arm because of the surgery and walks with a slight limp. She is able to run, jump, and play. Cognitively she is doing quite well. She reads at grade level and her writing has improved immensely. She is currently struggling to memorize all of her addition facts but is able to use manipulatives or a number line to find the answer. How is your granddaughter progressing with development? Are the seizures slowing her down? How many does she have daily? Have they considered doing a three-stage surgery to discover exactly how much of the hemisphere is effected? Praying you find her the help she needs. Please don’t hesitate to ask if you have any more questions. :)

          • Magan henderson says:

            Hi kelly! This is magan henderson. You have been corresponding with my mom , Becky about my daughter Eisley and I have been following your feed and website about your daughter. I wanted to jump in here and talk to you. First off I am so excited that the surgery was successful and your daughter has been seizure free all that time and is doing well cognitively. It really is inspiring and makes me so happy that she can have a normal childhood.Honestly that is my biggest concern right now for Eisley. Her development is so far behind and her cognitive skills are lacking to say the least. To be able to have what you say gabby has is a dream for us. I hate that she lost use in her left arm and has a limp but the reward for those… I’m so happy she is proof it was worth it. Eisleys doctors are quote “60%sure all her seizures are originating in the right side ” not very good odds. But they just aren’t sure. If it is on both sides they will not touch it because she has already had resection surgery on the right. We have discussed surgery to find out but they santo exhaust every medication in the world first. I just want what is going to give Eisley the best chance but I’m honestly losing faith. So many medications, diets, oils, voodoo (joke) you name it we have tried it. It’s so nice to read your story and to hear about how well gabby is doing. There aren’t many people who understand ad I appreciate so much being able to reach out to you. Thank you for that, for responding and for sharing gabbys story.

          • Hi Magan, It is so good to hear from you! I absolutely hate that your daughter is having seizures and know that as a parent, it is one of the most difficult things to stand-by and watch. I’m only familiar with the details you have described about your daughter’s situation, but I just want to share the first things that popped into my head. Understand, that anything I say is because I care and want more than anything to help. Firstly, there is a window for normal development to occur. If you miss the window, you often miss the development, because of this, I believe we need to be very pro-active in stopping seizures in young children. Secondly, if you have tried three medications, and none of them have worked, the chances are infinitesimally small that another drug will be found effective. Thirdly, according to Johns Hopkins, if a developmental malformation such as cortical dysplasia is present, then the likelihood of dietary changes such as the ketogenic diet helping is very remote. Have you sought out a second opinion? We were told that Gabby’s seizures appeared to be coming from both sides following her right frontal lobe resection. We flew to NYC and presented the exact same data to a new set of doctors and they declared immediately, with confidence, that all the seizures were coming from the right side. Doctors have different levels of experience and you need an epileptologist who has tons of experience reading EEGs and interpreting the data of children with catastrophic epilepsy. Their expertise can make all the difference in the world. If you haven’t already, I would find a doctor who can say with more certainty exactly where these seizures are coming from. So that you can know for sure if there is anything else that can be done. If you already have that confirmation, then disregard all of this. I will be praying Eisley’s seizures can be controlled and that you are given much strength and courage to continue on this difficult journey. Much love, Kelly

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