Heading for Duke

Hey Family and Friends,

Gabrielle and I will be heading to Duke around 1pm today. I just wanted to post a link to the following article

It describes a boy who was a surgical candidate and had a similar diagnosis to Gabrielle. Just thought some of you might be interested in learning more.

Thanks for all of your words of encouragement!

Please Pray

Tomorrow Gabrielle will be admitted to Duke for 2-5 days. She will have continuous EEG monitoring and a PET scan completed. We should know by the end of the week if she is a surgical candidate. It is all in God’s hands. The tests will show whether or not surgery is an option. Without surgery the doctor said there is a 100% likelihood she will continue to seize making it very difficult for her to have a normal development. Please pray for Gabrielle and the rest of us as we continue down this uncertain path.


God’s Protection

On Friday July 27th Gabrielle had her second MRi to take a closer look at her right frontal lobe and to see whether the dysplasia was localized enough to make her a surgical candidate.
The MRI went well and we left Duke about lunch time. As Gabrielle and I drove home around lunch time everything seemed ordinary and I wondered when we would receive the results from the surgeon. Suddenly without warning there was a tractor trailer truck heading straight at us on hwy 40. It began to strike the cars in front of me and fire erupted. I didn’t have enough time to stop and I accepted death at that moment and reflected on how I had been so worried about Gabrielle not knowing that today we would die together. I don’t recall steering or braking but our car veered to the right and we missed the fiery truck by 5 feet. Our car slowed down in a feild of grass beside the highway and the tractor trailer exploded seconds later. It is only by the grace of God that I am here to tell about it!


Our Trial continues..

Gabrielle had the MRI June 7th. The following day was very emotion filled. Gabrielle had me so worried. I prayed for her all day. She slept most of the day or was extremely fussy. She had projectile vomited several times and when she was awake I was walking around trying to keep her content. I became really concerned about her that afternoon. She wasn’t smiling, would barely make eye contact and she was having trouble supporting herself. I gave the doctor a call and he felt Gabrielle was still recovering from the conscious sedation on top of the seizure medication. He recommended I cut back on her medication dosage that night and see how she was by the next day. That evening she was doing a lot better. She was smiling, making noises, and playing with toys.

In addition, when I called the doctor with my concerns they gave me the MRI results and said that everything was NORMAL!!!! Let me tell you that was AMAZING after the hours I spent on the web becoming familiar with every neurological disease that can cause seizures in a 7 month old!!! Epilepsy can still be a difficult thing to control even when a cause is not identified but let me tell you we had a lot to celebrate because it was not a tumor, it was not a vascular malformation, it was not a developmental malformation, and it was not some horrible genetic disease like tuberous sclerosis that can cause tumors to form throughout most systems of the body. We were off to have a Yay God Celebration!!!

The seizures however continued despite adding a second anitconvulsant (Keppra). We went for a second opinion with Dr. Lewis at Duke. He rechecked the MRI and informed us she had cortical dysplasia which is a malformation of the brain that often causes seizures. The radiologist who had originally read the MRI had made a serious error. We were told meds can help control seizures in this case about 1/3 of the time.

We continued to pray for Gabrielle. On July 16th she had 7 seizures in 24 hours despite being on high doses of anitconvulsants. She was fussy and had little time when she was alert and happy. We began to investigate whether she would be a good candidate for brain surgery to remove the cortical dysplasia that was identified on the MRI.

We took Gabrielle into Duke ER and her meds were changed again to include phenobarbital. We met a few days later with Dr. Grant a pediatric neurosurgeon. He told us she may be a surgical candidate but we would need to do further testing to know for certain. He told us the dysplasia appeared to be a good distance form the motor strip which was excellent news! Gabrielle was scheduled for an MRI videoEEG, and PET scan.


Our Journey begins

Gabrielle’s first seizure was on April 30th 2007. I was nursing her at the library under a light blanket and when I removed the blanket to burp her she was lying limp in my arms with her eyes rolled back and twitching slightly. She wasn’t breathing and was unresponsive. She was seen at WakeMed and monitored throughout the night. The doctors felt it was an episode of reflux and probably not a seizure.

Two weeks later Gabrielle had 7 more episodes like the first and was seen by Dr. Wooten, a pediatric neurologist. She had an EEG sleep study done. The EEG showed epileptic potentials which indicated frontal lobe partial seizures. She was scheduled for an MRI to see if there was any malformation or cyst in the frontal lobe. We were told to begin anti-convulsant meds right away to control the seizures. The doc said it is difficult to make a long term prognosis at this point. It will depend on how she responds to the medicine, etc. Despite everything she seemed to be content and happy which was a blessing. The doctor also said it was good we caught them early and the fact that she has developed normally to this point is good.

We had the elders of our church pray over Gabrielle and all of our friends and family were praying. We asked for God’s guidance about whether to begin the meds. If Gabrielle continued to seize that would be God telling us to begin meds. On May 21st Gabrielle had 2 more seizures and we began giving the anticonvulsant Trileptal. She was scheduled to have an MRI on June 7th to see if there was any visible cause for the seizures. All were praying that the anticonvulsant controlled the seizures and that it didn’t have any unwanted side effects. We began to pray that the MRI didn’t reveal any major malformations.

May 31st she had 2 more seizures so we needed to increase her medication dosage again. She was still adjusting to the last increase so we prayed she would tolerate the new dosage, that it would control her seizures, and that we wouldn’t see any side effects. The MRI was scheduled for the following day to rule out any abnormalities that may have been causing the seizures After researching complex partial seizures it was difficult to know what outcome to specifically pray for. God knows what is in my heart though and He knew I wanted the very best possible outcome for my daughter. I just kept reminding myself that He loves her more than I am even capable of.