Gabrielle Faith O'Melia

We have been enjoying many happy days over the last month. The increase in Gabby’s Trileptal seems to have helped the disorientation and shakiness she was having upon awakening. We completed a 72 hour ambulatory EEG last week but do not yet have the results. We noted one episode during the recording when Gabby was shivering slightly upon awakening. She was still responsive and her diaper had leaked so she was damp. I guess it wouldn’t be out of the question that it could have been some ordinary shivering on a cold morning after just awakening in damp PJ’s. However, once you involuntarily become seizure experts as we have, something like this is definitely considered suspicious. So we will wait and see what her little brain waves look like these days.

Outwardly, Gabby has been behaving in the most encouraging ways. She is counting to ten, identifying letters and colors, singing the lyrics to many songs, using the mouse to navigate websites like www.starfall.com, and she loves “reading” books.

Recently we have taken a much needed break from therapy. Gabby aged out of the Early Intervention program and we are waiting to attend her first IEP meeting next week to find out what kinds of services she will be offered through the preschool program. Unfortunately the preschool program requires that you drop your child off for services unless there is a medical reason that would make it unsafe for the child to leave their home environment. This has been torturing me. I really want what is best for Gabby. I have so many mixed emotions. I guess if money didn’t play a part in any of this I would just hire private therapists to come into the home throughout the day and work with Gabrielle. Realistically this isn’t going to happen. So I’ve begun to consider what we can offer her at home, what we can afford privately, and what the preschool program will offer. I’m praying for very clear direction and that we would have complete peace with our decision.

Enjoying one happy day at a time!

Kelly

Gabrielle and all the rest of us had an amazing Christmas! Gabby loved attending the Christmas Eve service at our church. In fact she was so full of spunk that evening I had to bring her to the back of the sanctuary for a while so we didn’t disturb others. She was calling out the name of every child she saw and saying “hi” to them. Following the service she ran around with the other children and had a ball! You would have never guessed she had been “off” a few weeks earlier.

Christmas morning she received an Elmo Live doll. When Gabby opened this gift she was thrilled. She thought Elmo had literally come over to play with her. Unfortunately, Makinley was equally intrigued by the little red guy so there were a lot of tears when Gabrielle refused to share her new friend. We hid Elmo for awhile when the girls went down for their naps.

Later on in the day Uncle Russ and Aunt Nancy came over which Gabby was super excited about. If you asked her, “Whose birthday is today?” she responded, “Jesus”. She loved singing “Happy Birthday” and helping to blow out the candles.

The following day we celebrated our second Christmas when Mimi and Poppy arrived from CT. Gabby was so happy to see them! She enjoyed having countless books read to her and just being spoiled in general.

I can’t remember feeling more blessed than I did this Christmas.

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