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:
Last Saturday Gabby’s neurologist, Dr. Devinsky, recommended we try increasing the Trileptal a bit more over a few days. We made the first increase last Saturday and then increased the dose again on Wednesday. Gabby tolerated the increase well but unfortunately it hasn’t helped the seizures much as of now. She had 18 seizures Saturday and 3 yesterday. I’m communicating with Dr. Devinsky via email right now and we’re in the process of choosing a second medication to add to her regimen. Dr. Devinsky continues to impress me. This is the second time he has helped us out while on vacation.
My hopes of setting up an ambulatory video EEG were squashed. Raleigh Neurology no longer offers video capabilities with their ambulatory EEGs and at Duke I would have to wait until September to schedule an ambulatory so we opted to have her admitted for an inpatient VEEG on August 19th. This seemed a little far off but we grabbed the date realizing Duke would be way more convenient and we could always run up to NYU before then if needed.
We are very much in a waiting mode right now. Waiting to see if the meds help. Waiting to find out where these seizures are coming from. Waiting to find out if surgery is an option. Waiting on God.
I love the lyrics to John Waller’s song While I’m Waiting:
I’m waiting
I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait
I will move ahead, bold and confident
Taking every step in obedience
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait
I’m waiting
I’m waiting on You, Lord
And I am peaceful
I’m waiting on You, Lord
Though it’s not easy
But faithfully, I will wait
Yes, I will wait
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve you while I’m waiting
I will worship while I’m waiting on You, Lord
So I will continue to wait and I’ll upadate when we know more.
Thank you for your continued prayer!
Love,
Kelly
3 comments
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August 4, 2009 at 3:18 pm
Carolyn Puperi
I am so sorry to hear that Gabrielle is having seizures again. I will put her on the prayer list at my church and will continue to pray for her and for the family. She is such a beautiful little girl.
August 6, 2009 at 2:38 am
David Fajgenbaum
Dear O’Melia Family,
I hope you are doing well. I wanted to get in touch with you all about your experience with Dr. Grant (he is AWESOME!) and our organization (National Students of AMF Support Network- for college students coping with the illness or death of a loved one). He is speaking at our organization’s annual fundraiser and we would like to invite Mr., Mrs., and Faith to attend. Your story about him was part of what inspired us to give him the “AMF Service Award” (along with his Air Force doc service).
Please email me back at david@studentsofamf.org so I can give you more information about the event.
David
August 15, 2009 at 6:04 pm
allan branch
This video breaks my heart, I hope they can find the proper treatment. God bless your beautiful family.