Monthly Archive

We arrived home safely this morning from our trip to CT and NYU. I am exhausted! Gabrielle was admitted Tuesday 5/20 and was discharged Tuesday 5/27. Many seizures were captured on the Video EEG, we obtained an ictal SPECT, and completed the MEG. Dr. Devinsky plans to present her case on Tuesday at the next neuroconference. The data that has been reviewed thus far suggests Gabrielle will be a candidate but we will know for certain in the coming weeks. They will most likely recommend a 3-step brain surgery which you can read more about here: http://www.med.nyu.edu/communications/news/pr_176.html

Depending on the area needing to be removed Gabrielle could be left with multiple deficits such as left-sided weakness, loss of fine motor in the left hand, loss of half of her visual field, and memory issues. She is already at risk for attention and planning deficits associated with the removal of her right frontal lobe. Please continue to pray that God will make it perfectly clear if Gabrielle is a good surgical candidate.

Overall, the trip was a success despite many trying moments. We appreciate all of your calls and emails so much. A special thank you to Mimi and Pop for taking our large family in for so many days!

We love you!
Kelly

We will be leaving Saturday night to drive to my parent’s house in CT. We should arrive Sunday morning giving us time to regroup and rest before heading back to Manhattan on Monday. NYC is about 2 hours from my parents. We will hopefully be admitted between 1-5pm on Monday if all goes well. Occasionally they have to bump you up to the following day if a bed is not available. Lets hope this is not the case.

Gabrielle will be having a Video EEG completed over about 3 days. As of right now I have not heard about any further testing being scheduled but I’m hoping they will complete as much of it as possible while we are there. I know they mentioned doing a MEG and I’m not sure whether they would want a repeat PET or SPECT. I should know more once I speak with Dr. Devinsky.

We’re unsure about when we’ll return to Carolina. I guess it all depends on the results of the testing and the time frame for subsequent steps. We would certainly prefer to make this one long trip rather than multiple short ones given the traveling time.

Thanks to all of you who have offered to help us out in so many different ways! We greatly appreciate all of your love and support! What would we do without ya’ll?!

Thank you especially for your continued prayer!
Kelly

We arrived home yesterday after a whirlwind trip to NY. Despite arriving at RDU with expired driver’s licenses (that’s right, both Duff and myself) and arriving at the wrong Club Quarters Hotel (after an $80.00 ride from the airport) things went surprisingly well!

We met with Dr. Weiner for 1 1/2 hours. His office was filled with pictures, letters, and poems from so many children who have had life changing surgeries. Dr. Weiner said his career is very stressful but the children keep him going and make it worth it. We were very impressed with Dr. Weiner. He has a very logical and scientific approach. He conducts very thorough testing to determine if a patient is a candidate and also to gain as much data as possible before surgery. He called his friend Dr. Devinsky, a neurologist, to see if he could fit us in before we flew back. He was able to see us a half-hour later.

Both Dr. Devinsky and Dr. Weiner agree we need to move forward with testing to determine Gabrielle’s candidacy for surgery. Dr. Devinsky recommended we have testing completed at the facility in which we plan to have surgery. We decided to cancel all testing at Duke and to reschedule it at NYU. After spending all of yesterday afternoon on the phone with BCBS, Duke, and NYU I think things are falling into place. I will say I am beginning to hate insurance companies. Nothing is straightforward when you are dealing with BCBS. I am beginning to understand why so many doctors no longer participate with them. Anyway, Gabrielle is scheduled to be admitted on Monday to NYU. The doctors are eager to collect some of their own data so they can present Gabrielle at the next neuroconference and discuss her case.

At this point we are planning to all drive up to my parents house in CT. We are not sure of all the details but Duff is planning to stay there with the kids while I’m in the hospital with Gabby. We will keep you posted as the plan unfolds.

Please continue to pray that we would remain joyful in hope, patient in affliction, and faithful in prayer as Romans 12:12 states. I am continually amazed at how this trial has already changed and shaped us.

A special thanks to Robin for being brave enough to watch 7 kids by herself so we could go to NY. As she promised, she took “very good care of our babies”!

We have been busy celebrating a wedding with family and having a lot of fun so I am just getting around to posting an update. Gabrielle continued waking many times during the night last week and then began clustering first thing in the morning. On Friday she had 6 seizures in 10 minutes and I gave her Diastat to break the cycle. After consulting with her doctor we increased her Lamictal again and also added a bedtime dose of Klonopin to her regimen to help lessen the nighttime seizures. The Klonopin seemed to really help the first night. She slept in her bed the entire night for the first time in 2 1/2 months! I was pretty excited. I’m still seeing nightly seizures but she is able to fall back asleep and she isn’t clustering in the morning.

Last night, Gabrielle woke up at 10:30pm in a pile of vomit which could have been the result of a seizure or the virus which is currently making its way through our house. She had 2 other seizures during the night in which she started heaving but didn’t actually produce anything… I know, lovely.:) We are praying this does not become a pattern.

Gabrielle has been much sleepier this past week. Her appetite has decreased and her steps have grown more wobbly. She is having less “good” time. I sure am glad to be heading to NYU for a second opinion on Monday. We are also scheduled to be admitted to Duke,May 26th for another SPECT and VEEG. Gabrielle will probably stay about 3 days.

We continue to pray and trust in God. We know He has a plan and by the end of this month we should have a better idea of what that plan is.