Hello to all! We are home safe and sound now. I want to first say thank you to all that left such encouraging words on our last post! Each one has meant so much to me and has shown me such a sweet love that has warmed my heart. Thank you to those of you who have called and inquired about us and our trip. I apologize for not getting back, I have been very tired trying to get back into the swing of things and dealing with the jet lag. My age really does show as I can’t seem to bounce back like I think I should!
Dr. Devinskie came in on Wednesday morning and again explained that Abby is having epilepsy waves in her right anterior lobe. Seizures are occurring do the consistent “spiking” going on. Spiking is best explained like this. Say you’re sitting reading a book and you have a massive seizure that knocks you off your chair. Your whole brain is not functioning due to the seizure and you no long can read. With “spiking” it’s different. Again say your sitting reading a book, spiking would be someone consistently poking you in the arm taking your focus off your reading because you’re being irritated by the poking. In a nutshell Abby’s right anterior lobe is spiking and irritating her whole brain causing seizures and doing damage. He said that she is so globally delayed that this activity is not good as it will prevent her from developing to her full potential.
He wants me to think long and hard about the possibility of surgery as an option for her in the future if we can not get her seizures to stop completely with a higher dose of Sabril. I am to call him in 2 and 1/2 weeks to let him know how she is doing and if she is still seizing we will again increase the Sabril. During which time he is going to bring Abby’s case before his surgical conference group for review to discuss her candidacy for surgery. We are to plan on coming back out in 4-6 months for possible additional testing or surgery. I CAN’T EVEN GO HERE!
If the Sabril does work one of the long term effects is damage to the peripheral vision. We already know she is blind in her right eye (that’s why in her photo’s her one eye is off a bit) and in the left eye we know she can see, but just how much we are not sure and will never know. Dr. Devinskie weighing possible blindness or further brain damage is something to think about and of course I would rather no further brain damage. It is absolutely awful to have to make a decision like that for your child and wears heavily on your heart! Of course the vision vs. damage to the brain to me I didn’t give a second thought, but when I sit and ponder it I am so saddened because possibly to take away one of her senses arrrrrrugh... I am so visual; being a photographer site is everything... just so hard and hurts right now I don’t like being a parent and the responsibility that comes with the job!
Since we have left we have logged about 100 seizures and today she has had 5 so far. My prayer is that the medicine works so we do not have to have brain surgery... I don't want to walk that path... I don't even want to think of it. If you think of Abby, please pray for Gods will! He will sustain our family no matter the out come... He has shown us this in the past and will continue to be steadfast in my unsteady daily life.
Here are some photos that journal our trip from beginning to end... pictures really do speak 1000 words. Again, thank you all for your prayers, I am sorry this is short and to the point, I just don’t have the inspiration to share more of my heart as it is heavy right now. God is good, He is in control and He is my refuge...
Molly "Faithful Friends" Laurie
Abby Sleeping On Way To NY
Majestic Clouds On The Way To NY
Me & Abbs Waiting To See Doctors
Dr. Lajoie & Dr. Devinskie
Crazy Hair Before EEG Application
Ouchy & Icky Momma I Don't Like This!
Momma Makes It All Better
No More Please!
Crazy Spiking Brain Wave Activity!
Feeling A Bit Better Now For Now...
All Tuckered Out... Sweet Gifts From Pilots To Make Flight Fun!
Feeling A little Better Now!
~ Spectactular View ~ God's Beautiful Creation From Above!
Thunder Head We Pass On The Way Home!