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.

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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.

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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:

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