Georgia Lily

Georgia Lily
My Love Bug

Thursday, April 19, 2012

Day 4

  Hard to believe just this morning we were in the hospital getting one of the last tests run and tonight we are relaxing from our last minute excursion to Seaworld. We had a great time, we thought we were going to have to leave because of the rain but just as we were going to give in, the rain subsided and the sun came out. Thank you Jesus! Georgia loved getting out of the hospital and really enjoyed the Shamu show. What a blessing that we were able to go, Sean got to get us in free and all we had to pay for is my mom, who has had a dream of visiting Seaworld.

   The dust has settled as it would and Sean is really at peace with things, me on the other hand am not. I guess I am just a selfish person but I really do not want my child to have right sided weakness and I want her to have perpherial vision. I want her to have everything. While I know that this is a small sacrifice for Georgia to not have seizures, it weighs heavily on my heart. She does so much now as much as she can while suffering from debilitating seizures and she might have to completely relearn how to walk. She has had such a hard life, it is hard for me to have to ask her to give up more. It just does not seem like a fair trade, give up the seizures but you are completely giving up perpherial vision and you will be weak on my side. Why does Georgia have to have it so rough? Why? Seems like a good question I can ask God when I see Him.

   I know this probably sounds crazy...I have been praying for three years for Georgia to be made well and yet the time is here where the seizures are going to be made better and I cannot help but feel sad. Maybe not sad but I feel weird, it has been a part of our life for so long I cannot imagine how we are going to be when Georgia is no longer seizing. I almost do not want to say that Georgia will be seizure free because I feel like I am going to jinx myself, or maybe it is too good to be true. Kind of all over the place with my thoughts so I apologize if I do not sound as clear as I would like to be.

   Tomorrow, Georgia will have her MRI and then we will be able to come home. Saturday we are going to take the kids to the beach, it is Conerly's first trip, so it is pretty exciting. I cannot wait to see my lil man and hold him and laugh at him and just look at him and know that he is with me. Tomorrow marks the last day of this part of our journey but is the beginning of wait for the surgery. It is three weeks from today that Georgia will be wheeled back to the OR for the first of two possible brain surgeries. Praying for a miracle and for strength to get through this valley.


   Well this morning has started off productively, came to the hospital to relieve Daddy, thankfully Georgia slept all night. She woke up in a great mood, the nurse came in to give her meds and take her vital signs. The nurse disconnected the IV which they had to give her to keep her hydrated while she has NPO (nothing by mouth) meaning that she could not eat or drink anything. Then at promptly 9:00am the nuclear meds tech injected Georgia with the isotope. She was then disconnected from the wall and we were allowed to take Georgia next door to the playroom which she throughly enjoyed and everyone complimented her on her jammies. At 9:50 we were again loaded up on the stretcher and hauled off downstairs to do the testing. I was able to ask the nuclear med tech about the testing and how it would be reviewed, I was a little confused on how they would compare this test to Tuesday's test. Evidently, the doctors overlay the tests and see what they like to call "hotspots" they want to make sure they do not show up when Georgia is not seizing. Only when she is seizing, this helps them to ensure that they are hitting the same spot every single time. Pretty interesting.
Enjoying my freedom, I love the sunshine
My Nana
I love my Mommy
Riding on the stretcher downstairs, Mommy has to make sure I do not try to jump and make a run for it
The giant donut, we got to take pictures today
Um, more wires please
Last minute chin rubbing with Daddy
We know that we are in the right place; this painting is right outside the elevators
A Visit from Dr. Lee
   I had to write all of this down before I forget so I apologize if this is a little disorganized. Please let me know if you have further questions and I will try and answer them if I can. First, Dr. Lee showed s the Ictal scan, the scan that was done on Tuesday, the left side aka the "problem child" looked considerably different from the right, it was all lit up with the solution. Then Dr. Lee showed us the PET scan, again same story with the left side looking different from the right. Dr. Lee told us that all data solidifies his hypothesis further that the left side is the culprit and we are looking more and more like we are going to have to do the hemispherectomy. Not so great news, but he did show us a video of a little boy who had the exact same problems as Georgia and had the hemispherectomy and is doing fabulous, considering that only one side of his brain is functioning. This little boy can run and talk...clearly you can see the weakness of the right side and his hand will never work the way that it is supposed to but he talks and he interacts appropriately for his age. Dr. Lee is very thorough and just to make sure that he is doing the right thing, I think we are still going to go ahead and do the brain mapping. He wants to be absolutely positive that this is the best thing for Georgia. Also, Billy, Dr. Lee's nurse, is going to set up a way for us to communicate with this little boy and we will get to talk to his parents. This is so great, being able to talk to someone who has walked this path is amazing, more than words can express. Dr. Lee said that he wants Georgia to be able to talk to us. This doctor is so amazing and I am glad that God has lead us here.
    Sean and I have not really had a chance to talk over things but I am sure that we will later today when the dust settles. We got some really good news though, Georgia will be able to be disconnected from all of her wires and we will get to be discharged this afternoon. We will be staying at the Ronald McDonald House today, all of us! Yay! Yay! Freedom! She will still have her MRI early tomorrow afternoon but we will all be home tomorrow night.
    Sean and I still believe for a complete healing of our little Love Bug and while the doctors tell us of the side effects, i.e, the right sided weakness and no perpherial vison, we still believe that God will completely heal her. We still know that God is working and He will continue working in Georgia and He still has time to heal her Himself, however, if He chooses to work through this doctor, we know that this is His will and He will bring Georgia through the surgery. This is the miracle that we have never stopped praying for. Good things to come! Praise God!

Wednesday, April 18, 2012

Day 3

   This morning started out kind of rough for Mommy, as I was putting on my make-up and fixing my hair all alone with no one pulling on my leg or crying at my feet or holding their hands up for me to pick them up, it hit me how much I need my babies. Poor Georgia is hooked up to all of these wires and only able to follow me to a certain point before being pulled back to the wall. It makes me sad when I get my reports from Laura about all the cute things that Conerly is doing or that today he was crying a lot, I think he really misses me, but then I think does he realize that I am not there, has he forgotten me? I know that I am in the right place but in my heart I feel very sad and down. I want my family to all be together, laughing at the kitchen counter or splashing in the bathtub. I want to scold Conerly for going up the stairs by himself and then getting stuck on the way back down, I want Georgia to be getting up on the T.V stand for the 100th time that day and told to stay off of that. I really miss those things today.

   I am glad today is over, we are on the downward slope of this hospital stay, only one and a half more days then beach time! Georgia has been such a trooper, she has all the wires attached to her and this IV in her hand, yet she is still playful and happy. She is my hero, I do not think that I could have gone through all that she has been through and still have a smile on my face. I love her so much and I am so glad that I am her mom. I know that there are times when I wanted to run away and start a new life but running away from the problems does not solve them, I have learned on this journey that I have to accept things are this way and I better get with the program and face them head on. Besides, I know that no one could ever care for Georgia the way that I do and I would worry endlessly.

  Today, the plans changed, surprise, surprise...Georgia had an off day. She did not get the intra-ictal scan which made for a very long day. We also did not get to see the doctor today because he got called into the OR. His nurses did come by though and told us that if Dr. Lee gets enough seizure activity we might be able to take the EEG off early. Sounds good to me but not holding my breath, I have heard that before from other doctors, we shall see. The day went surprising well, we made a card together and we watched movies and listened to music and rested. Made me feel a little better because two days in a row she was sedated, I am no medicine person, but I imagine that being sedated so much is not good for her little body. At dinner time everyone left us to go eat and Georgia and I had some Mommy-daughter time, I gave her a mini-bath and I let her splash in the water, then I gave her a massage and lotioned her up. Then she fell asleep in my arms. I am so thankful for our time together.

   We had quite a few visitors today, Sean's mom, grandma, grandpa, Sean's Aunt Robin and Uncle Bill and Lauren, a girl that I went to school with. Grateful that everyone came to visit our Bug and lend some moral support.

   One a different note, one of the last nights before we were admitted to the hospital I read the entire book of Esther. A easy read and it showed me that God is in everything, nothing is a suprise to Him, He makes a way for things to come to pass and He allows us to go through things that may be unpleasant and painful but all things have a purpose. I would encourage you to read this book if you have not, it is really easy to read and easy to understand. I think that I am starting to realize the purpose of Georgia's illness, I am her mother and I have had to walk this path so that I may help others. I'm sure if I had met Dr. Lee to start with, I would not have realized the full potential of God's faithfulness and goodness. I was not ready for surgery, I was in denial for a long time and I pitied myself. For this, I will always be sorry. I wish that I could have been a stronger person at the beginning of Georgia's illness. But, everything happens this way it does for a reason and as I have said before, I am a better person and a better mom to my children than I ever could have been had this not happened. God has been holding me through this and He will continue to hold me, I need Him so desperately and not just to heal my daughter but also to heal me and mold me into His daughter. I do not want to hurt Him or disappoint Him, He is my Father and just like my earthly Father, I want Him to be proud of me. I would encourage you if you do not have a relationship with Jesus, to start talking to Him, seeking Him out, to lean on Him in times of trouble and times of happiness, He loves you so much and He wants to share His goodness with you. I think of all those nights that I cried out to Him and I could not hear from Him but I know that He was crying right along with me and He was that shoulder that I was crying on.

Finally, PUSH, PUSH, PUSH...Pray Until Something Happens. It took a tantrum and screaming out to God before finally giving her to Him fully and trusting Him with her life before He started moving. He is very jealous of us and He wants us all to himself, I was holding on to Georgia with all my might but God wants to hold her for me. He gave her to me to raise but she is His child.  "Behold, children are a heritage from the Lord, the fruit of the womb a reward." Psalm 127:3 "For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made." Psalm 139:13 Georgia is perfect, God does not makes mistakes. He knew she would have seizures but He knew that Sean and I could take care of her and that we would love her no matter what. I needed her more than she needed me and I love her to the ends of the earth and back.

   Here are some pictures from our day, hard to get a good picture of Georgia but they are what they are.
 Georgia, sporting her new hairbow. A girl has got to do what a girl has got to do
 She loves her Daddy so much!
 Being playful, see that mischevious grin? Gets her out of trouble every time.
 All tangled up
 Enough Mommy!
 Like the priss she is...
 Being silly in her crib...Unfortunately, we can not let her stay in a regular bed for obvious reasons..
 We can see her EEG right in our room, you can also see the camera view, located in the upper right corner
 Sleeping Beauty
 Marking the seizure
Sean's family 
 My mom and Sean's grandma

Side note: Georgia's seizure come from the left side of her brain, if you look the EEG above, it is broken into four sections, left, right, left, right. The right side is the normal side and the waves look the way the way they are supposed to look. The left side is the "problem child"as you can see from above, it causes sharp spikes on the EEG. According to the nurses it is looking more like we are going to have to disconnect the left from the right. This is the more drastic surgery but if it will make her stop seizing than we are going to do it. Please keep praying.

Tuesday, April 17, 2012

Day 2

   Today we started our day early, Georgia got to sleep in though which was really nice. Georgia has a lot of seizure activity in the morning which really paid off today, the neuromed tech came to our room about 9:00 this morning and got everything ready to inject Georgia with the isotope, which needed to be done as soon as Georgia seized. Right away, Georgia started seizing but the first couple of seizures were not good enough for the tech in the EEG monitoring room, however, Dr. Lee came to our room and informed the EEG tech that the next cluster of seizures we saw, we could have the neuromed tech inject her with the isotope. We were so impressed with Dr. Lee, he let us call the shots and that was so good, he is such a good doctor and he listens to us and does not make us feel like we are burden to him. This will be the only time I ever pray for a seizure, I can assure you that.The transport team came to get us and they loaded Georgia and I up on a stretcher bed and as soon as we laid down on the bed, Georgia went right to sleep. This time when they sedated her it was not nearly as devestating, I mean you could see when the medicine hit her but she was already sleeping, not like yesterday where she was writhing around and then went limp. The scan machine was pretty interesting looking, looked like a giant donut that had just enough room for the her head. The entire test took around two hours, during this time we were able to go to the Lake Side cafe and then we walked around the lake and it really helped us to relax a little. Around 1:30 Georgia came back to her room but she slept most of the early afternoon which really helped Sean and I, the more she sleeps the better it is because it means she is not getting herself tangled up in all the wires.

   The plan for tomorrow is pretty much like today except the scan is called an inter-ictal and it is like a baseline control test, they inject an isotope into her but when she is not seizing. All these tests are done to show the doctor where the seizures are originating from. We did not get to see the doctor today to review the PET scan but I am almost positive we will see him tomorrow. Sean and I are nervous, we are praying that Georgia is a surgical candidate, this is our last bit of hope to make her better. So please continue to pray for her and pray for us and of course that the doctor would have the knowledge to know what to do.

   Thank you to all of you who have emailed, called, texted and facebooked us, it really means so much to us and to Georgia.

Monday, April 16, 2012

Day 1

   Today started out a little crazy, went to the wrong place and our PET scan was a little later than was originally planned, but everything worked out. Georgia was put to sleep around 2:30 and was awaken at 4:00. Heart wrenching! Nothing will ever be so painful as to watch my beautiful little girl put to sleep. But I am glad she was in my arms and I am glad I was there when she woke up. After the PET scan we checked into the hospital and were hooked up to the EEG. Our hospital room is very small but child centered with internet access, movies in the room and games and toys. Georgia is also able to move around the room a little, she is not stuck in the bed. Thank you Jesus for the small things. All the nurses we have met are super friendly and Dr. Lee stopped in to welcome us on his way to the OR. So encouraging! We are so glad we were lead to Dr. Lee. Georgia is really happy, she must know her life is about to get so much better. Only 25 more days of seizures! The doctor said he could tell us about her PET scan tomorrow and by the end of the week he should be able to give us some preliminary surgical information, nothing will be set in stone until he meets with his team and they go over all the test results. We are still praying for a surgical resection or of course no surgery at all but we know God is in control and He will be with Georgia no matter what happens.

   There was a beautiful painting at the entrance of the hospital of a surgeon during surgery and Jesus is standing there guiding his hands, stunning! All the more reason to feel we are in the right place to do the surgery. We feel so blessed to be here and under this doctor.

Saturday, April 14, 2012

Thank You!

   I would like to say a special thanks to all those people who have donated funds to cover the expenses of the surgery. We are so grateful and I will be sending out a special letter in the upcoming week. Sean and I cannot express our gratitude for all the generous family members, friends and people that have never met us. We are so thankful.

   Sean and I are up and down about the surgery, we know this is our only option to give our Love Bug a good life but we struggle with the finality of it all. We know once we sign the papers there is no going back. I fasted last week and will probably fast starting at the beginning of May until Georgia has her surgery. We are still praying that God will heal her before the surgery is needed but we know that He is going to take care of her no matter what happens. Please continue to pray for her, that she would be at peace, would have the strength to undergo the surgery, and to quickly recover. And also for our family, that we would be at peace with everything and that God would give us the courage to do what we need to do for Georgia.

   Lastly, I want to say that nothing happens by chance, today I met a little girl by the name of Abigail, she is seven and just started having seizures Christmas morning. She still had little indentions on her forehead from her stay on the epilepsy monitoring unit this past week. She was absolutely precious and I had the privilege to pray for her and her family. I was also able to ask her if the seizures hurt and she told me no they do not hurt. Her mom told me that Abigail only says she cannot remember having a seizure and the worst part is the way people react to her. A question that has haunted me for years, I finally have an answer to. God sends angels us during our darkest times to give us peace. "For he will command his angels concerning you to guard you in all your ways" Psalm 91:11 It never ceases to amaze me what God will do and how awesome He is.

Dirty Mop Water  
   Yesterday, I had witnessed a beautiful sight, my two children playing together in the dirty mop water! I cannot convey my feelings of pure happiness at this sight. I have never seen my little girl play with her brother and to see her smiling and them encouraging one another was something that I will not ever forget. Great things are coming for my little girl. Thank you, Jesus for answering prayers.

Tuesday, April 10, 2012

New Date for Surgery

   I recieved a phone call today from Dr. Li's nurse, the neurologist seeing Georgia, we got some disappointing news, Georgia's surgery has to be post-poned. The EMU (epilepsy monitoring unit) is going to be under construction, expanding the unit. We still will be admitted next week for all the testing that I previously wrote about but will be discharged Friday. So as it stands right now, May 10th is the new surgery date and should not be changed again. We have two options, the doctor has not decided which surgery he is going to do and will not know until next weeks when all the tesing is done, it will either be a surgery to do brain mapping, which is where they open up the head and attach 300 leads to her brain and monitor her or it will be the functional hemispherectomy. If Dr. Li decides to do the brain mapping, they will monitor her brain activtity for a week and then May 17th they will take off the leads and do a focal resection, which is where they isolate a part of the brain (the problem child) and disconnect it from the brain surrounding it. The focal resection would be a far better option depending on where in her brain it is. Either way, Dr. Li is going to do the least invasive surgery that he can to make Georgia all better.

   I also got some very good news, Dr. Li does not like medicine and prefers not give it out like candy like our previous doctors, basically pick from the hat and there we go...He wants medicine only to be taken for a short time. I had to call today to get the doctor to up Georgia's dose on Lamictal to her previous therapeutic dose but was pleasantly surprised when I was told that the doctor was not going to do that but rather put her on a new FDA approved drug at a very small dose to hold us over until next week when we are admitted. Georgia has been having a lot of seizures, I'm not sure if it is because she feels the anxiety in the air or because the new season or what but anyway, an increase in seizure activity is an increase and we need to address that. Also, if we do a focal resection she will be on the meds for a year depending on how the surgery goes or only about 6 months if we do the hemispherectomy again depending on how the surgery goes. I cannot even imagine not having to give Georgia her meds, we have been giving her meds since she was 6 months old...Good times ahead!

   At first, I was kind of upset that her surgery was going to be moved back, I want to get it behind us so that we can get our daughter back to us and also because it is weighing on my nerves, but I'm at peace because I know that God is working out the details. He is going to see us through it and as so many people have reminded me, if I have been dealing with this for three years, what is a few more weeks? And, if there is a possiblity to do a simpler surgery with less side effects than I am for that. Only God holds the key! I trust Him completely! "I will say of the Lord, "He is my refuge and my fortress, My God, in Him I will trust."" Psalm 91:2

As Jamie Grace sings,

You lead, I'll follow, Your hands hold my tomorrow,
Your grip, Your grace, You know the way,
You guide me tenderly,
When you lead, I'll follow,
Just light the way and I'll go,
Cause I know what you got for me is more than I can see,
So lead me on, on, on and on,
Just lead me on, on, on and on,

Letting the Lord lead us, He knows best! Praise God!

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!

Monday, April 2, 2012


   I wanted to post something, do not have a lot of time now but more will follow. Georgia will be admitted to Florida Hospital in Orlando on April 16 for five days to run a series of tests. Following that Georgia will have a functional hemispherectomy on April 23. This is a 6-8 hour surgery and will have to stay in the hospital for 5-6 days following surgery. Please keep praying, God is listening and He is opening doors like never before. Can't wait to have my baby back seizure free! This will be the hardest hurdle yet but we will get there. Thank you!