Georgia Lily

Georgia Lily
My Love Bug

Monday, April 9, 2012

Roller Coaster

   Up and down I go, through the twists and turns, wanting the ride to end but realizing I'm just approaching the top of the summit. One minute I'm over the moon excited about meeting Georgia and getting to really know my daughter without "the beast" lurking and the next I find myself crying out and thinking the worst possible situation. To say it has been rough would be an understatement. I cannot seem to focus on anything other than the approaching surgery date. It's always on my mind and its hard to just focus on the moment. Though I'm sure anyone in my shoes would feel the same way. I have spent a lot of time in prayer over this and in my heart I know this is the only option for Georgia but in my mind its a whole other battlefield. I keep picturing my little love bug on that operation table and my heart wrenches. I have been communicating with other people who have walked this path and they have said two things across the board 1.) Waiting is worse than the actual surgery and 2.) This is the best thing that was ever done for their child. I have read so many inspiring stories from other mothers who have had this procedure done for their child. It's quite amazing for the longest time I felt so alone and honestly had no idea that there were other people out there like me, feeling the same pain and seeing their child suffer from "the beast" but when God puts things together it happens FAST! Out of the wood work these people came and meeting Anneliese is nothing short of a miracle. So for that, I'm grateful. I'm also grateful for all the people who have graciously donated to Georgia's fund. God is providing more than we could ever have hoped for and are so thankful.

   Last night I had a wonderful dream, I was talking to God and asking Him all these questions and I remember His reply, Everything is going to be okay, I'm not going to leave you and I love you. Desperately, I have been praying to Him this week and for me to have a dream like that solidifies my decision to do this surgery for Georgia. More than any other time, I am clinging to my Father and He is gently leading and guiding me. I do not know where I would be if I did not have God on my side. "For God so loved the world that He gave His only Begotten Son, so that whoever believes in Him would have everlasting life." John 3:16 Thank you God for seeing past all my mistakes and sins that you should send your son to save my life.

   Life is full of valleys and trials but we should rejoice when we are put to the test because God is refining us. "Dear friends, don't be suprised when the fiery ordeal comes among you to test you as if something unusual were happening to you. Instead, rejoice as you share in the sufferings of the Messiah, so that you may also rejoice with great joy at the revelation of His glory." 1 Peter 4:12-13 This is a hard thing to go through but I know when all of this is past I can look back and know that God was molding me. "No discipline seems enjoyable at the time, but painful. Later on, however, it yields the fruit of peace and rightousness to those who have been trained by it." Hebrews 12:11 I know that God loves me and wants me to fully trust in Him because He cares about me and He cares about Georgia. "Humble yourselves, therefore, under the mighty hand of God, so that He may exalt you at the proper time, casting all your care on Him, because He cares about you." 1 Peter 5:6-7

About the Surgery

One week prior to surgery (April 16-20) Georgia will be admitted to run several tests, EEG video monitoring, MRI, PET Scan, and Ictal Scan.
EEG Video, as seen in the above picture, Georgia is hooked up to 30+ leads that monitor her brain wave activiy, there is also a video camera monitoring her the entire time and we have to press a button when Georgia is having a seizure to mark the test so the doctor can not only see the brain activity but also what Georgia looks like when she is having a seizure.
MRI: Magnetic resonance imaging (MRI) is a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body. Georgia will be put to sleep and they will take pictures of her brain to see what part of her brain is damaged and causing the seizures.
PET Scan: PET (positron emission tomography) shows the brain's use of oxygen or sugar (glucose). Georgia will also be put to sleep and they will inject her with a sugary fluid that will go straight to area of the seizures.
Ictal Scan: A tech will come sit with us and when Georgia has a seizure the tech will inject a fluid into her which will go staight to the area of the brain causing the seizures. Then she will go and they will take pictures of her brain again to see where the solution went. As a control they will also inject a fluid into her when she is not having a seizure and take a picture as well.

All of these tests are run to make sure the doctor knows exactly where the seizures are orginating from. Once all the data is collected we will have a conference type meeting with about 20-25 people and they will dicuss with us what type of surgery will be done and all the details. So far though, from what the doctor has seen he is set on doing a functional hemispherectomy. Basically, the surgeon will disconnect the left brain from the right brain. But the nurse did tell us if the doctor can find a focal point of the seizures he will basically isolate that from the rest of the brain. Which would be far less drastic. The doctors are going to do the least invasive surgery he can to make Georgia better. From what I have read, more than 75% of patients experience complete or nearly complete seizure control. Those are great odds because only a few weeks ago, we were told it could never get better and we needed to love her as best we could. Plus, I have God on my side and I know this is where He has lead us. I know that God will see us through!

   We love the doctor, he was so compassionate and clearly wants to help children like Georgia. The neursurgeon has never lost a patient (and Georgia is not going to be the first) and the nurse who works with him used to work in cosmetic surgery so her stiches are fabulous. Another plus, they shave off as little hair as possible, which is great because it has taken Georgia three years to get the hair she has now. I was telling my mom this and she said, well when God orchestrates things, he never gives you second best. Praise God!


  1. Hey! I know it is so nerve racking for the up coming surgery...but I just wanted you to know that I know how you 6 months time, you will look back and be so grateful you moved forward and hopefully, you'll start to see that amazing milestones Georgia will be making (though, small milestones to others, HUGE for her!!!). This may sound weird, but I am SO excited for your family that this is an option (not a lot of people get to have surgery as an option)...if you need to talk, call me anytime! I'll be praying for Georgia and your family :)

    1. Hello! Thank you so much for your inspiring words, they help more than you ever know. Thanks for the prayers.

    2. I read your blog all the time and I have it linked on my blog, I know that Cole is going to be fine and I might call you sometime this week to discuss ater we get Georgia home. Thanks again!

  2. Our church family is praying diligently for Georgia and your family. tHis post was really helpful in understanding what will be done. I was so encouraged by the Scriptures!
    Love in Christ Jesus, the Author and FInisher of our Faith,
    Bettina Howell

    1. Thank you so much for all the prayers, I'm glad you are able to better understand what will be happening with Georgia during our hospital stay. Take care!

  3. Misty,

    Where do we find the donation information? I have been waiting to see it... I must have missed it. Please let us know.


  4. Hello Terry,
    On the left hand side just below the main picture is a donate button. It is linked through paypal. Hope this helps and thank you so much!