Gabrielle Faith O'Melia

Gabrielle has recently had several episodes that concern us. A few weeks ago, when I would awaken her, she began taking longer than normal to begin interacting with her environment. She might flutter her eye for a second or swallow hard. My heart would skip a beat as I held my breath and prayed a seizure wouldn’t follow. I began watching her very closely. Last Sunday, I woke her up from a nap and she shivered slightly for a second and I noticed a very subtle shaking of her right arm and leg. My heart sank.

Throughout the week Gabby began asking to go down for a nap only a few hours after waking up. She began taking 3-4 hour naps and acting more tired and irritable. Her appetite has diminished and she has been less energetic and active. We had a little virus in the house so I hoped some of these changes were related to Gabby battling this recent cold. Then yesterday Gabby had two very strange “events” while we were attending a friend’s birthday party. She seemingly fell asleep in a chair while eating her lunch. I grabbed her and she remained like this for a minute or two. She pulled out of it and seemed a a little sluggish and disoriented for a bit. An hour or so later she fell over and instead of getting back on her feet to continue playing she just lay there completely still and her body was rigid when I went to pick her up.

I contacted Dr. Weiner about her recent MRI and everything looks good in terms of hydrocephalus, etc. I corresponded with Dr. Devinsky this AM and he is recommending an increase in her Trileptal, an EEG, and a blood draw to check Trileptal levels. Dr. Devinsky and Dr. Weiner are wonderful docs if you’re looking for a good neurologist or good pediatric brain surgeon.:) They just amaze me with their responsiveness!

I really wanted to write a post about how Gabby continues to soar developmentally. I wanted to tell about how she has beaten the odds. How she has shocked the medical world and amazed the doctors. I wanted to detail her physical and intellectual accomplishments. I wanted the “happy ending” so badly. The fairytale ending where everyone lives happily ever after. But could I really trust myself to write the ending? Little old imperfect me? A fallible human being struggling in an imperfect world just doesn’t seem like the right person for the job. So once again I lay down my pen and remind myself I am not the author of this story.

Just wanted to post a little video footage of Gabby getting down with her big sister Keagan.

I used to sing this song to Gabrielle all the time. When she was 8-10 months old, her brain was continuously seizing and we were waiting to find out if Gabby was a surgical candidate. I would hold her in my arms much of the day, rocking her tiny body, and looking into those big blue eyes. I would begin to sing Jesus Loves Me only I would change the words to Jesus Loves You. Immediately tears would fill my eyes as I reminded my daughter despite all the suffering she was presently enduring Jesus did love her. Truthfully, I was reminding myself. I was convincing myself that a loving God could allow such painful struggles.

Three surgeries and countless seizures later Gabrielle has begun to sing the very same song to me.

Jesus loves me! this I know,
For the Bible tells me so.
Little ones to Him belong;
they are weak but He is strong.

Yes, Jesus loves me!
Yes, Jesus loves me!
Yes, Jesus loves me!
The Bible tells me so.

Today is Gabrielle’s 3rd Birthday and we really do have a lot to celebrate!

Gabrielle is walking.

Gabrielle is talking.

Gabrielle is understanding.

Gabrielle is climbing out of bed when she should be sleeping.

Gabrielle is throwing tantrums.

Gabrielle can hum “Jesus Loves Me”.

Gabrielle can point to all her body parts.

Gabrielle enjoys watching Elmo and Abby.

Gabrielle can dance.

Gabrielle can feed herself most foods.

Gabrielle hasn’t had a seizure since surgery.

Gabby had a very happy third birthday. The thing she enjoyed most was having Happy Birthday sung to her by her family. She has watched the following video repeatedly and she stands in front of the computer watching it and singing along.

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