We will be leaving Saturday night to drive to my parent’s house in CT. We should arrive Sunday morning giving us time to regroup and rest before heading back to Manhattan on Monday. NYC is about 2 hours from my parents. We will hopefully be admitted between 1-5pm on Monday if all goes well. Occasionally they have to bump you up to the following day if a bed is not available. Lets hope this is not the case.

Gabrielle will be having a Video EEG completed over about 3 days. As of right now I have not heard about any further testing being scheduled but I’m hoping they will complete as much of it as possible while we are there. I know they mentioned doing a MEG and I’m not sure whether they would want a repeat PET or SPECT. I should know more once I speak with Dr. Devinsky.

We’re unsure about when we’ll return to Carolina. I guess it all depends on the results of the testing and the time frame for subsequent steps. We would certainly prefer to make this one long trip rather than multiple short ones given the traveling time.

Thanks to all of you who have offered to help us out in so many different ways! We greatly appreciate all of your love and support! What would we do without ya’ll?!

Thank you especially for your continued prayer!
Kelly

We arrived home yesterday after a whirlwind trip to NY. Despite arriving at RDU with expired driver’s licenses (that’s right, both Duff and myself) and arriving at the wrong Club Quarters Hotel (after an $80.00 ride from the airport) things went surprisingly well!

We met with Dr. Weiner for 1 1/2 hours. His office was filled with pictures, letters, and poems from so many children who have had life changing surgeries. Dr. Weiner said his career is very stressful but the children keep him going and make it worth it. We were very impressed with Dr. Weiner. He has a very logical and scientific approach. He conducts very thorough testing to determine if a patient is a candidate and also to gain as much data as possible before surgery. He called his friend Dr. Devinsky, a neurologist, to see if he could fit us in before we flew back. He was able to see us a half-hour later.

Both Dr. Devinsky and Dr. Weiner agree we need to move forward with testing to determine Gabrielle’s candidacy for surgery. Dr. Devinsky recommended we have testing completed at the facility in which we plan to have surgery. We decided to cancel all testing at Duke and to reschedule it at NYU. After spending all of yesterday afternoon on the phone with BCBS, Duke, and NYU I think things are falling into place. I will say I am beginning to hate insurance companies. Nothing is straightforward when you are dealing with BCBS. I am beginning to understand why so many doctors no longer participate with them. Anyway, Gabrielle is scheduled to be admitted on Monday to NYU. The doctors are eager to collect some of their own data so they can present Gabrielle at the next neuroconference and discuss her case.

At this point we are planning to all drive up to my parents house in CT. We are not sure of all the details but Duff is planning to stay there with the kids while I’m in the hospital with Gabby. We will keep you posted as the plan unfolds.

Please continue to pray that we would remain joyful in hope, patient in affliction, and faithful in prayer as Romans 12:12 states. I am continually amazed at how this trial has already changed and shaped us.

A special thanks to Robin for being brave enough to watch 7 kids by herself so we could go to NY. As she promised, she took “very good care of our babies”!

We have been busy celebrating a wedding with family and having a lot of fun so I am just getting around to posting an update. Gabrielle continued waking many times during the night last week and then began clustering first thing in the morning. On Friday she had 6 seizures in 10 minutes and I gave her Diastat to break the cycle. After consulting with her doctor we increased her Lamictal again and also added a bedtime dose of Klonopin to her regimen to help lessen the nighttime seizures. The Klonopin seemed to really help the first night. She slept in her bed the entire night for the first time in 2 1/2 months! I was pretty excited. I’m still seeing nightly seizures but she is able to fall back asleep and she isn’t clustering in the morning.

Last night, Gabrielle woke up at 10:30pm in a pile of vomit which could have been the result of a seizure or the virus which is currently making its way through our house. She had 2 other seizures during the night in which she started heaving but didn’t actually produce anything… I know, lovely.:) We are praying this does not become a pattern.

Gabrielle has been much sleepier this past week. Her appetite has decreased and her steps have grown more wobbly. She is having less “good” time. I sure am glad to be heading to NYU for a second opinion on Monday. We are also scheduled to be admitted to Duke,May 26th for another SPECT and VEEG. Gabrielle will probably stay about 3 days.

We continue to pray and trust in God. We know He has a plan and by the end of this month we should have a better idea of what that plan is.

Gabrielle has been having all of her seizures lately while awakening out of sleep and during the night. She is up every 1-2 hours during the night and sometimes more frequently. When I grow exhausted from getting her back to sleep in her crib I stick her in our bed. This is how I confirmed she is having at least 3-4 seizures per night. She is also having seizures upon wakening in the am and after her nap.
You can tell she does not rest well because she normally falls back asleep within an hour of getting up. By afternoon she has still been coming to life. She wants to be down playing and walking. Her appetite returns and she is quite interactive. She seems to be turning her left foot inward when she is up walking. I think the seizures are responsible. Despite all of this, Gabrielle was out playing in our cul-de-sac the other night trying to keep up with the other children. She was walking up and down the street and dodging bicycles and scooters.

We haven’t heard from the doctors about getting Gabrielle in for more testing. They only have a handful of pediatric beds that have video EEG monitors. I will probably call today just to check in with her neurologist.

Thank you for all the wonderful posts and for continuing to pray for Gabby!

Good Morning,

We met with Dr. Grant at Duke yesterday. He is amazing. He completely blows the stereotype of the self-centered, arrogant, know-it-all neurosurgeon with no bedside manner out of the water! He is so caring and compassionate I couldn’t stop crying after the appointment. He truly cares!

We went over the EEG and it definitely shows bilateral activity. The next step is to figure out if it is really bilateral or just an illusion. Dr. Gallentine will be trying to schedule a videoEEG and an ictal SPECT. These tests will give us a better understanding of what area or areas the seizures are coming from. We will also look into scheduling a MEG while we are at NYU for the second opinion. This is a special machine similar to an MRI which may also help in establishing a seizure focus. They do not have the machine at Duke and Dr. Grant feels the MEG can certainly be a revealing test.

The bottom line yesterday was we do not want to proceed with any surgery until we have confirmation that the seizures are confined to one hemisphere. If they are, then we can place a grid on her brain to determine whether there is a seizure focus or widespread neuronal dysfunction. This would dictate whether lesionectomy or hemispherectomy would be a more promising option.

Dr. Grant said he will see Dr. Weiner at the end of this month at a conference and he will tell him about Gabrielle. He said Dr. Weiner is a very smart man and is well respected. Dr. Grant offerred to communicate directly with Dr. Weiner and collaborate in any way necessary to get Gabrielle the care she needs. We are blessed to have doctors like Dr. Grant at Duke.

Please continue to pray for God’s will in all of this. I am turning it completely over to Him knowing He has a plan. I feel in the past year I have entered into a world of sick children. This world was always present but I just wasn’t a part of it. I was able to forget about the children suffering in hospitals all around the world while I lived my life in a bubble of happiness. A bubble where you worry about what to wear, what’s for dinner, when you’ll find time to clean, and where to go on your next vacation. I feel like a veil has been lifted from my eyes and everywhere I look now there is a child suffering and heartbroken parents. I have entered a world where parents are clinging to Jesus just to get through another day. I guess I am forever changed…changed for the better because I too am clinging to My Father just to get through another day.

Please continue to pray!
Kelly

Hey All,

Gabrielle is at a therapeutic dosage of Lamictal now and her Trileptal levels should be in the middle to high range. She continues to have daily seizures. Over the last week the seizures are occurring mostly at night. She is awakened throughout the night by the abnormal electrical activity and still looks exhausted in the morning. She takes her medication and goes back to sleep a short time later. By the middle of the afternoon she seems pretty happy and has still been walking around.

Tomorrow we have an appointment with Gabrielle’s neurosurgeon at Duke to discuss her case. We are wondering whether to proceed with more surgery at this point. We are looking for guidance about how aggressive to be this time. How many seizures warrant more surgery? How much brain do you sacrifice to attempt to stop the seizures? What happens if the other hemisphere has subtle abnormalities not appearing on MRI?

All of this would be almost paralyzing in the absence of God. There are so many unknowns. If this were all happening in my days of atheism I would have certainly had a nervous breakdown by now. How glad I am that I serve a great and mighty God who knows every hair on our heads and each tear that falls. How comforting it is to know that all of this is happening for a reason and according to His plan. I pray that God directs our steps according to His will. I pray that He would make it very clear how we should proceed and that there will be no uncertainty. I pray that we will completely trust His way because He is so much greater than us.

I’ll update again soon!

Kelly

Gabrielle has been doing somewhat better the last couple of days. She has been having 1-2 seizures. She basically wakes up, takes meds, has a seizure, and goes down within an hour for a morning nap. After arising from the nap she can be clingy and a bit fussy but by afternoon she comes to life and is walking around playing. We increased her trileptal again yesterday because when her levels came back they were low-moderate. She still has one last increase on the lamictal to bring her into therapeutic range which will happen Tuesday. I spoke with a resident yesterday and he read me the EEG report. It sounded like most of the abnormal activity is coming from the right but there is some bicentral activity meaning it was close to midline and difficult to say which side it had originated from. He expects Dr. Gallentine will want to read the EEG himself when he returns and give me his interpretation.

I have been working on lining up a second opinion this week. Who knew nobody takes BCBS anymore? I called Children’s National Medical Center and Dr. Bruce has resigned. I called Johns Hopkin’s and Dr. Ben Carson doesn’t accept BCBS and I was going to have to go through their epilepsy center before making an appointment. I called NYU and Dr. Weiner doesn’t accept our BCBS but the hospital does. Basically after speaking with BCBS I found out the most we would have to pay out of pocket is $2200 for an out of network doctor. Sooo, we are scheduled to see Dr. Weiner May 12th in Manhattan. He has a really good reputation and has developed a 3 step brain surgery which sounds very logical. I am working now to gather all of Gabby’s records and digital test results from Duke.

We will continue to keep you posted. We appreciate your continued prayer and support so much!

Kelly

Gabrielle began having 6-8 seizures per day last week despite increases in her anticonvulsants. We met with her neurologist Monday to develop a game plan. In looking at her last post-operative MRI we can see that there is still tissue in the right frontal lobe that could be removed without causing major deficits. The problem with cortical dysplasia is the malformation can be very subtle and the margins not well defined. Therefore it is difficult to know with certainty which area may or may not be affected and thus resection is not always straightforward.

Yesterday Gabrielle had a sleep deprived EEG completed so we can assess where the abnormal electrical activity is originating. We are praying it is localized to the right because this would mean she is a surgical candidate. We should know more by next week. We continue to play around with her meds and they drew levels to see if she’s in therapeutic range. Unfortunately, cortical dysplasia is very pharmacologically resistant and often the only way to silence it is through surgical removal.

So we will wait for the results and make plans to get a second opinion.

Thanks for continuing to check in on Gabrielle!

Kelly

Gabrielle continues to have 1-5 seizures per day. She is waking throughout the night lately which may also be seizure related. The medications do not seem to be helping. Johns Hopkins called today and they don’t feel Gabrielle is a particularly good candidate for the diet. They could schedule us to come in July if we are interested in giving it a try but said that children with cortical dysplasia generally benefit most from surgery. We are trying to figure out our next step. Please continue to pray for wisdom and direction.

The good news is, despite all of these seizures, Gabrielle seems to have gotten a better handle on walking. She had a good day Monday and was walking all over the place! Just wanted to share the following video so you can see the progress for yourselves.

We continue to take one moment at a time. Gabrielle has been doing better since we increased her medication on Tuesday evening. She has had two very short seizures. She becomes very sleepy from the meds in the morning but has had some pretty happy afternoons and evenings. She seems to be struggling with her balance a bit. One minute she can take 12 unassisted steps and the next moment she struggles to take one. I’m not sure if this is med or seizure related but most likely it’s related to both.

We continue to pray the seizures come back under control and that Gabrielle would continue to move forward developmentally.
I’m reminded today of the immense sacrifice God made for us. These earthly problems pale in the shadow of the cross. The following lyrics, from a song by Rebecca St. James, come to mind:

“There is nothing left to fear
nothing Heaven knows
For He died for us to give us life
and to give us hope He rose.”

Happy Easter!

Gabrielle continues to have 1-2 seizures per day. The abnormal electrical activity makes her very fussy and not herself at all. It is like she is not completely here. I contacted Johns Hopkins about the ketogenic diet and they will be getting back to me about whether or not they feel she would benefit from the strict dietary regimen they offer. I will be discussing her medications and other treatment options with her doctor today. Please continue to pray we are guided in the right direction.

My dear friend Lisa reminded me in an email to “be thankful and celebrate just this moment”. Last night we definitely had one of those moments to be celebrated. Although Gabby had a seizure yesterday, when she awoke from her nap, it was like everything in her brain had normalized and she was taking 8-12 steps at a time and walking all over the place to keep up with her big sister Maddie. It is that moment that is carrying me through today! Thank you, God!

Gabrielle has had 3 seizures since I last posted and it is so difficult to watch her struggle with this again. Please continue to lift our daughter up to the Father. Please pray that we would be given direction about how to proceed in terms of medication or other treatments. I constantly need to remind myself to push the worry aside and trust completely in God’s plan. It is so hard and so I appreciate your prayers and support.

Gabrielle went 18 days without any seizures and then had one yesterday morning on the way to church. She had another one this morning after waking up early with a soaking wet diaper and bed.

It is so difficult not to worry. Each seizure brings back the flood of concern about what tomorrow holds. Yet I am reminded of the bible verse from Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

I began thinking last night of the death of Eve Marie Carson at UNC. Her parents may not have had any reason to be concerned for their daughter. They may have only been looking forward to a very bright future for their daughter and yet her life was taken at the age of 22. I recall the fatal accident on I-40 that Gabrielle and I were protected from. We may forget that our days on this earth are numbered as we busy ourselves with daily tasks. We may forget that we are all mortal as we distract ourselves with engagements and responsibilities. Yet the fact remains, each of us IS mortal and the bible says “And who of you by being worried can add a single hour to his life?

So I will continue to pray that I will be anxious for nothing and that I live each day as though it were my last.

Gabrielle received the prayer shawl, seen in the pictures below, from a church in central PA. This church was made aware of Gabrielle’s health problems by Gloria Shannon, the sister of a friend (Carol Auer) here in NC. The church’s prayer warriors have been praying for Gabrielle for months. Attached to the shawl was a card which read:

Prayers and loving thoughts were stitched into this Prayer Shawl as it was made for you.
May it be a sign of God’s constant presence and His abiding love.
May it remind you to be thankful for the precious gift of life you received and grateful for your unique God given talents.
May it remind you to treasure your parents and loving circle of family and friends.
May it surround you with warmth and comfort when you are weary.
May it be a mantle and sign of God’s healing presence when you are sick.
May hosts of angels surround and protect you as a baby and as you grow into adulthood.
May God continue to bless you and grant you strength and wisdom along the way.
May you be blessed with good health in body, mind, and soul with a kind, loving heart.
Enjoy your shawl made with love, hugs and prayers.
And remember to trust in the Lord.

Shawlers of Blessings Ministry
Campbelltown Untied Methodist Church
Made By: Pam McCorkle

I can’t thank you ladies enough for remembering our daughter in prayer. It is incredibly moving to find out complete strangers are going before the throne on our behalf. The shawl will be a reminder to this family of God’s amazing love for we have surely seen His love shining through the people who have surrounded us during this time.

This shawl will always remain with Gabrielle and it is my prayer that she will one day be able to read the attached card.

May God Bless all of you!
Love,
Kelly

Gabrielle received the prayer shawl pictured below from Stephanie Thompson who is the Aunt of my soon-to-be SIL Nancy Holdsworth. She worked on this shawl with 6 other women and even her son Jack had a role. Stephanie included the following note with the shawl:

Though you do not know me or any of the fabulous women who have knitted on this prayer shawl and prayed on it and you, please always remember, you are so loved and cherished. My son, Jack, prayed on you and has been with me through the making of this shawl. We have all spoken your name and lifted you up in prayer holding this shawl with tears in our eyes knowing that God has a wonderful life in store for you- He has made you strong and you are covered in so much love. You, Gabrielle, will always be in our lives-once we speak a name and lift it to God aloud, that person is written in out hearts! What a blessing you have been to us all.

Kisses and Hugs to you and your family. I am so blessed that Nancy and Russ allowed me to be part of your life.

Always remember God loves you and so do I.

Auntie Stephanie

Thank you for the amazing love you have shown to our family. When I received your letter I was very moved to know that all of these women and one child had gathered to pray for my daughter. I really couldn’t believe that strangers had cared enough to pray and spend their time creating a shawl for Gabrielle. To some it may seem a nice gesture but for me it was so much more…knowing the prayer’s of the saints sit on a golden altar before the throne of God. For me it was so much more because of what
1 John 5:14,15 says.

“This is the confidence which we have before Him, that, if we ask anything according to His will, He hears us.
And if we know that He hears us in whatever we ask, we know that we have the requests which we have asked from Him.”

Thank you for praying for our sweet little girl. Thank you for making a shawl that will always be treasured not for it’s beauty but because of the loving hands that created it. I pray that one day Gabrielle is able to read the letter and look at the pictures of each of you. I pray she is able to understand the power of prayer and the depth of God’s love for us.

Love,
Kelly( Gabrielle’s mom)