Monthly Archive

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