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
Hey Kelly!
Welcome Home! I was relieved to hear that your trip was a success and eager to hear what opinion was derived. I know how hard it is to hear and consider the possible deficits from surgery, but what a difference it is to have a child who is seizure-free or who only has the occasional seizure! You never fully appreciate the effects of daily repeated seizure activity or multiple seizure medications on a child’s mood, behavior and growth and development until they are without these factors. The difference for us was truly immense!
I continue to pray for Gabby and for you that your strength, patience and faith remain strong!
If there is anything you need, please do not hesitate to ask. I do look forward to the day when we can meet in person. You already feel like a member of the family to me.
Julia
Dear Kelly and Duff and family,
I’m glad to hear you’re home safely. I was sorry that I didn’t have a chance to speak with you while you were in CT this time. I did see the children and had such joy watching them play.
Your mom told me about the blog, so I signed up and am thrilled to be hearing your news and seeing your pictures. You are in my thoughts and prayers daily. I love you all.
Mary