Monthly Archive

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