Georgia Lily

Georgia Lily
My Love Bug

Monday, December 31, 2012

Letter

Dear Georgia,
   I love you honey more than words could ever say. You have made me the happiest, proudest Mommy ever. I can only hope to achieve the determination that you as a four year old possess. I have never seen someone so determined not to let life keep her down. Your smile lights up the room, when you smile everyone around you smiles. You are growing so fast, I do not know where the time has gone. I know that life has not been easy but you always seem to stay positive and keep a smile upon your face and laughter in your belly. I cannot wait to see how far life takes you. There is nothing that you cannot achieve besides what you limit yourself to. I love you baby. Happy 4th Birthday.

xoxo,
Mommy

Happy New Year!

   "For I know the plans I have for you, declares the Lord, "Plans to give you a future and a Hope." Jeremiah 29:11

   I thought it only fitting to celebrate the last day of this year with an update about Miss. Georgia. This very day last year we had many people all over the United States praying for a miracle. We got our miracle and are so blessed and thankful and grateful for all that has happened in the last 7 months.

   We celebrated her 4th birthday, which a bouncing success. We celebrated it at an indoor bounce house. We had an amazing time surrounded by friends and family. I could not ask for a better support group than those who surround my family. This year has been one of the most heartbreaking, heart wrenching, painful years but also one of the most wonderful years in Georgia's life. Reflecting back to the first of the year I could not have imagined the roller coaster that awaited us. But there is nothing about this year that I would change, not even meeting the neurologist that gave us no hope for her.

   We also celebrated Georgia's first Christmas (besides the very first one when she was 10 days old) without seizures or medication. It is surreal to even think about. As all children Georgia has her moodiness but to celebrate with her and see her laugh and smile and float from family member to family member is nothing short of amazing.

   The other day I had an epiphany, found in the book of Exodus, is the story of how the Jewish people were set free from bondage of Pharoh. After many plagues God sent upon the Egyptians through Moses the Pharoh relented and let the Jewish people free.  However, after Pharoh let the people go he changed his mind and had his army charge the Jewish people. Then Moses came upon the Red Sea; Moses had the Eyptian army behind him and the Red Sea in front of him. I'm sure he felt pure anguish, stuck between a rock and a hard place, some might say. But he prayed and he believed that God would see them through. And God instructed him to raise his staff and begin to walk. The Red Sea parted, the ground became firm and all the Jewish people crossed. The army perished. This is how I see the journey that we just took with Georgia, on the one hand we had doctors telling us there was no hope for her and on the other we had Dr. Lee telling us there was a cure but had to cross the threshhold. The crossing of the Red Sea for us was the surgery. We had to believe this is where God wanted us to be and had to have faith He brought us this far and He was not about to let the army overtake us. God is ultimately in control, nothing will prevent His will from happening.

   I look at her in pure amazement. I find it so hard to believe that Georgia had such a radical surgery. Half of her brain is gone!!!! I know this year has so much in store for us, I cannot wait to see what the future holds for us. It is my prayer this year that Georgia regains all of her strength in her right side and we get some words or a way of communication. The world is at our finger tips.

Be blessed and thanks for all the prayers that went up this time last year for her and for us.

XOXO

Tuesday, December 11, 2012

Playing in the Leaves

  


   Since the last time I posted two very important things have happened, Georgia celebrated her very first Thanksgiving with neither seizures nor seizure medication. And we celebrated 6 months without seizures, by all accounts she is considered cured. Can you believe that? Some days I feel as if it's too good to be true but then again, I think of God's promise to me those three years ago when Georgia first got diagnosed with epilepsy. He promised me that He was going to show me how BIG He was.

   My life feels perfect! Some days I feel so happy I could burst. Georgia is doing so great and every week she is improving. She is getting more usage from her arm and hand. She is able to stand up from the ground in no time flat. She is so happy all the time.

   I thank God everyday for the blessings He has so graciously poured out on our family, my cup runneth over! I never understood what that meant until this time in my life. All my life I have gone to church and believed in the Lord but it was not until Georgia got sick that I developed a relationship with Him and even after she was sick I still depended on myself and doctors to get her better. I thought I could will her into being well.  God does not work that way and He will let things happen in your life that will bring you closer to Him. No, I would never have wished for this, ever! but I am so glad it did. Georgia has brought me closer to the Lord as well as my son. I have known for a long time that this was not about Georgia, it has been about me and my walk with the Lord. Seeing her improve daily and my son develop normally has taught me so much about what really matters in life. It is not about the material possessions that one has or the money or the house or type of car you drive, it is about getting to go home to be with the Lord and spend eternity praising the Father that gives and takes away.

   This Christmas will be a very different one than from the past. Of course I always look towards this time of year to celebrate the birth of our Lord and Savior but this year it means so much more. We put our tree up two days after Thanksgiving and after it was all decorated we got the kids out of bed (which by the way were still up, lol) and we brought them downstairst to see it. Georgia saw the tree and lit up. Conerly and Georgia looked at the tree and saw the lights and the ornaments and sat there in amazement. This rarely happens, they are always on the move so for them to sit there was amazing! I believe this is the first year that Georgia has actually looked and really saw a Christmas tree. God is so good!



   This last couple of months have brought a lot of happiness to my heart, I never thought I would be here, I never thought I would be able to sit on the side lines and watch my little girl play. She loves playing in the leaves and running between the porch and the swing. I just sit and think to myself, what a beautiful life I have.


Wednesday, November 7, 2012

All in God's Timing

   *****Before I get started I wanted to address something that has been weighing on my mind. The first few months following Georgia's surgery I was in a bad spot. I was very down and I'm sure that was evident in my writings, so let me apologize. I did not realize how negative I had become and until recently I did not realize how much I had pushed people away. But I can say with much prayer and time with God I am in a much better place. I love life, I love my children, I love all the blessings that God has so graciously poured out upon me even during my darkest moments. So please continue to pray for us, me as well as Georgia. I hope to never return to that horrible, dark place again.
 
   Please watch this video prior to reading, most everything I write about is displayed here.
  
     Now on to the good stuff, it has been around a month since my last post. Many people have been asking about our little miracle. Well, you know that saying "Things get better with time" I would say that is ringing true. Yesterday, we met with Dr. Lee and he was so impressed with her. Friday will be 6 months post-op so keeping true to his word, we are now starting to wean Georgia the rest of the way off her medicine. Yay! I am so happy, this has been such a long time coming and I am almost in tears thinking of her this Christmas and birthday not being on any seizure medication, almost too good to be true if I did not have faith that this is exactly where God wants us to be. Since so many things have changed since my last post, I am going to list them out, please bear with me.

1.Her right leg and arm are growing incredibly strong. In fact, now when she wants to be picked up I make her raise her right arm. Prior to the last week or so she was completely unable to really use it purposefully.
2. Sometimes she reaches out with her right arm to grab objects. I fully believe she will regain most usage of her arm and hand. (If you remember, this was the hardest things for me to get past when we decided to go forward with the surgery, but God is all knowing and all healing, He is taking care of this for us in His timing.)
3.In the video above you can see her anticipating her Daddy coming to throw her in the air, this is awesome, she never had this skill before. Almost oblivious to the world around her.
4. She sings and giggles all the time, I love listening to her from the backseat, such a sweet noise that you all get to enjoy for yourselves.
5. All her therapists' rave about her and how much progress she is making. Her speech therapist said that Georgia is headed in the right direction for speech, meeting all the pre-speech skills children learn prior to talking.
6.Georgia answers to her name 99% of the time and will come when called. She has met this goal for speech. Yay!!!!
7. Most times she will lift both her legs and feet for shoes and she will bring shoes to show that she is ready to go outside.
8. Leading to my next point she turns the door knob on the front door to go outside (I really need to invest in the childproof handles)
9. I have seen her stand up completely unassisted from her bottom. This is quite huge because it requires a lot of strength.
10. She helps to dress and undress herself. She takes off her socks and can pull her shirt off if her right arm is out of the sleeve. When we get her pants out, she will come stand by me, put her arm on me for strength and slip both legs into the pants, one at a time of course.
11.I wish I had a video to show this but she is starting to play with her toys purposefully. She totes around her doll Edison with her and she has this toy where you have to push down a button and it counts for you. She loves this toy. She also loves to be read to.
12.She will stand by the wagon or the swing letting us know that she wants to play.
13.She is also starting to pull things off the counter, which is good and bad in itself.
So many good things to report. I love all the new stuff that she is learning and I cannot wait to see what the future holds for my little Love Bug.

 This was taken at her Welcome Home Party! So cute as a candy corn princess.
 Joyfully playing in the backseat
 Mommy and Georgia at the park
 Headed out to the pumpkin patch
Daddy, Georgia and our kitty Dodger. 

At Physical Therapy, riding a bike, doing most of the work herself!

As my title suggests it is all in God's timing. And sometimes we get impatient but I have to remember that Georgia is in God's palm and nothing will ever be able to snatch her out. "My Father, who has given them to me, is greater than all; no one can snatch them out of my Father's hand." John 10:29 I also heard this verse on the 700 Club this morning and I think it fits in nicely here, "It is better to take refuge in the Lord than to trust in humans." Psalm 118: 8 If Sean and I chose to keep with what some of the doctors we saw we might have given up, but as I have said before our Faith is in our God and there it will remain. God Bless!

Wednesday, September 12, 2012

A Blossoming Flower



  I know, I know...I always try to stay on top of this but it is hard, at the end of the day I want to curl up in bed and go to sleep. Last thing I want to do is stare at a computer screen. However, I have much to post about so here I am. Please forgive me.

   Right before my very eyes Georgia is blossoming. She is turning into the beautiful rose that I have always known was there but had forgotten about for a long time. When I think back to when Georgia was born and when I looked into those beautiful big eyes I see a baby that I had tons of dreams and expectations for. Around 18 months those dreams started to fade as I began to see her slip behind her peers and then when she was 24 months at her birthday I was in a deep spiral of depression and then 36 months when birthday parties really begin to be fun, instead of fun we saw Georgia slipping farther and farther away from us. I would go to her room expecting to see her not breathing, fearing a seizure had claimed her life in the night.

   This year has been an absolute roller coaster, up and down, around loops and bends, catching your breath before being thrown into hysteria again. At the start of this year my mom told me to pray and to pray for a miracle, she wanted to ring in the new year praying for Georgia. She told me this was going to be a good year for Georgia, the year that we were going to get our miracle. I believed and I prayed, just as many of you did. Tons of prayers went up to our Father and He looked down and He gave us a miracle. Sometimes when people think of miracles (like me) they think of instantaneous but other times God gives us them a little at a time. Maybe that is because we could not handle them all at once or maybe it is because God wants us to keep depending on Him. He knows this is what holds me close to Him, I want more for Georgia than this, I want everything for her but I am totally dependant on My Father. I can do what I can for her, I can take her to therapy, I can do exercises with her, I can show her new things but in order for everything to take root in her it depends on our Father.

   I want to review just how far Georgia has come, after the surgery Georgia was unable to hold her head up. sit up, swallow without choking, stand, walk, use her right side at all. Prior to surgery Georgia was not there, physically she was there but mentally not so much. She could walk and make her needs be known but that was all. She smiled a lot but she hardly laughed. She seized so much we could hardly take our eyes off of her. She fell a lot. She hurt herself a lot. Sean and I had to hover over her to make sure she did not hurt herself or someone else. She was unable to play by herself or be left alone.

   Fast forward to today, Georgia is happy! She is seizure free for 4 months, she smiles, laughs, makes eye contact (if she knows you), she walks, sits up on her own, climbs the stairs (modified of course), enjoys being outside, leads you to where she wants to go, lifts her feet for her shoes, knows what we are going bye bye or outside means (she stands by the door and waits), stoops down to pick up an object, is very affectionate, makes more vocalizations than ever, and plays with all toys (not just a select few) just to name a few. It's in the little things, I take nothing that she does for granted and I make a huge deal out of everything she does. Her therapist rave about how every week she is learning and gaining new skills, they have to make their goals for her high because she is exceeding the short term goals.

   Sean and I are so impressed with our little trooper, she takes most things in stride and pushes through the tough spots. She is the most determined little person I have ever encountered. I am so blessed to be her Mommy. " For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11. I know I use this verse a lot but I love it and I cling to that for my precious Georgia Lily.



Tuesday, September 4, 2012

Determined

   August was one hectic month for the McCauley family. We have settled into a new routine, at least I think we have. Georgia started school and the first days were a little hairy but now she does not cry at school, I can't help but tear up almost every time I pick her up and think of how far we have come. We are almost four months out from surgery but it still seems like yesterday. I am hoping as time goes by and we get further away from the surgery that my broken heart will heal. It's hard for people to understand if you have never stood where I stand. I am so grateful that Georgia was given the opportunity for surgery and she is doing AMAZING but she is still so far behind her peers, it seems at times she will never catch up. I was telling Sean yesterday that the journey to the destination  does not matter as long as we all reach the same destination but that journey, at least for us, seems to be a much harder trek. Talking to my sister-in-law today and she said something about getting to get a glance at the last page in our book of life and I totally agree. I do not need the whole chapter just a peak at the back of the book to make sure that it all ends the way that I think it should. God does not operate that way though, that is why it is called Faith, if we knew how it all ended we would not have faith. And of course I was reading last night in our study bible that if God allowed us to know how it all ended we would become arrogant.

   Georgia is doing well, she seems to enjoy school. We have not given her the bink in over 3 days either night time or at quiet time. She is also potty training, not really sure she understands yet but I'm sure she will get there. Her walking seems to be improving or at least according to the physical therapist, from my standpoint she looks the same. But I guess when you see something day to day you become immune to the small changes that are taking place.

Monday, August 20, 2012

Big Girl

   First things first, Georgia is doing fabulous, thank you for asking. :) She shook her head no to me yesterday and she imitated something I did the other day. She was trying to put her fingers in my mouth and I was shaking my head no and laughing at her, she started shaking her head as well. She has a beautiful laughter that can be heard throughout the house and fills my heart with such happiness and pure unadulterated joy! Words cannot properly express the feeling of being free, I feel free to dream for my daughter again, not to dread what the future held for us.I owe all the glory to God, my Savior and Deliverer. 
   Tomorrow starts the first day of what I believe to be the next chapter in our lives. Part of starting another chapter means you have found closure with the last chapter. I do honestly trust that we can put this behind us. No longer is Georgia held in the captivity of seizures, her tomb was rolled away and Jesus called her out.  Georgia will go for her first day of preschool. I'm nervous, scared, excited and anxious all rolled into one. I thought about enrolling Georgia in school before but because of the seizures I was too scared, of course anyone in my position would be. Tomorrow I will be brave and probably a basket case too. In my heart I know this is just a stepping stone to what will surely be a great thing for my Love Bug. 
   Please pray that Georgia will have a great day and that she will feel at ease, that she will not feel scared or nervous or any of those feelings I have. 

Saturday, August 18, 2012

It's Love




   Been putting this off for a while, I have been reflecting a lot lately. It all boils down to love. Does God love me even while I was down here suffering, watching my baby seize day after day? Does God love me while I had to rock my sobbing child and had no way to console her? Does God still love me when I yell and scream and doubt His loving ways? And the answer? A resounding yes. While I cannot understand what He had in mind when He created my beautiful little girl, I am reminded that His ways are not my ways. "For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts." Isiah 55:8-9 It's Love!

In the words of Francesca Battistelli:

Emily, I know you think it won't get any better
Life has gone and gotten so tough Emily,
you believe you will never ever
Never ever find that you're enough

Circumstances can change your mind
But time will help you see

It's love that hung the moon and stars for you above
And stays awake to start the morning
If you feel you've had enough
He's never given up

It's love Emily, you will see some stormy weather
Dark and cloudy days of rain
But Emily, there will be summer laughter
'Cause everybody knows the seasons change

Circumstances will turn out fine
And time will help you see

It's love that hung the moon and stars for you above
And stays awake to start the morning
If you feel you've had enough
He's never given up                     

It's love Can't you see
I know you believe me
Everything is whispering this well-known story

So listen in
It's humbling
All of this done for you

 Megawatt Smile

Brotherly/Sisterly Love


   Our Father had nothing but love in mind when He knitted Georgia in my womb. When I look back on baby pictures I can see that love reflected back to me. For a while there it was hard for me to look at Georgia's pictures, too painful, to think back, but now I can see what God had in mind. I love her and I love Him. It's Love!

Saturday, August 11, 2012

Hold the Phone!

Sorry I have not posted in the last three days, Conerly had surgery on Thurs, so we have been busy with that. For the first time in a very long time I feel free and very hopeful for the future, I no longer dread the next day and I wake up feeling light. Like a breath of fresh air has been breathed into my soul. Georgia is doing so wonderfully, she is walking laps around the house, hardly wants to sit at all. Just long enough to regroup and she is on the move again. Love, love, love this!!! Last night at my parents she was sitting by the phone (a real phone) and was playing with the buttons, every so often we would hear the answering machine go off and then Sean walks over and she actually has the phone to her ear. I do not know if I am over analyzing this but I do not know if she wanted a better listen to the sounds or is she was pretending to be on the phone. I guess either way it's positive. She spends her days giggling and playing, we have been practicing playing with her dolls. She will kiss them and hug them but then throws her doll down. I guess it will take time. After all God did no make the world in a day. I registered Georgia for school, I know she needs this but it does not help my heart. So this Friday we will meet with her teacher and discuss a good schedule for her because she will not be attending full time, that is just too much for mama to bear. I'm excited though because Conerly has never had the one on one time with me that Georgia had.

Tuesday, August 7, 2012

Molly the Dolly

Aa many of you know, Georgia hated dolls, I mean really and truly. Now Georgia likes dolls even has a soft cabbage patch doll that she sleeps with. Today, while visiting with my sister I picked up Molly the dolly and told Georgia to give her a kiss, she smiled and then kissed the doll. So precious. Georgia scoots around if she is unable to pull herself into standing position so constantly her leggings were falling off her waist today (even though they are sized 18 months) and I saw her look at them and then take them the rest of the way off. She has never tried to undress herself before except for taking off he shoes and socks. Then with that being said she also tried to pull them up and fix them. What a smart girl and so determined. Love my Love Bug!!!

Monday, August 6, 2012

Laughing from the Backseat

I meant to post this earlier this weekend but completely forgot, Sunday on the way to the mall, Georgia had her favorite toy an MP3 player and it was playing music and she was giggling. The whole 25 minute ride. So precious. Today she wanted to play in her inside swing and she led me right over and almost pointed at it. She is using her whole hand but I will take it. She also let me put Charlie (the kitty)in her lap and she kissed him. So dang cute!!! One more thing, I brought out a mirror for us to play with. Getting her to recognize herself is a big goal for her, now I'm not sure yet whether she realizes she is looking at herself or not but she did kiss her reflection. She is doing so well. After all, if we look at from when the second shunt was placed, when her true recovery began, it has only been little over four weeks. Wow!!! Really puts things into perspective, doesn't it?

Sunday, August 5, 2012

No Mommy!

Aside from Georgia walking everywhere and generally making great progress, tonight I asked her if she wanted her juice and showed her the cup and she shook her head no! Can you believe that?!!! I do believe that is the first time that we have had a back and forth communication. I give all the praise to God. He is opening doors like never before and so eagerly await what tomorrow brings.

Saturday, August 4, 2012

Shopping With Mommy

Today Georgie went for a girl's day out with Mommy and Aunt Ashley. Fun! We went to the mall and bought cousin Lissy her birthday gift. Georgia did not get upset much until she was just over it. We then came home to a house full of cousins. Georgia walked quite a bit today only needing asssistance to get into standing position. She is eating all the time now and she is getting good at letting us know she is hungary. Late this afternoon we played outside- Georgia loves going outside and getting on the swingset. It was a long but wonderful day. Thank you God for another blessed beyond measure day.

Friday, August 3, 2012

Walking, Walking, Walking

Today was another great day, Georgia is walking all over the place now, hardly wants to sit, great for her, not so much for Mommy. At least I'm getting some exercise. We took Georgia to visit with her cousins tonight and she really enjoyed herself. She did not cry at all over all the commotion. This makes me so happy. She also leads people where she wants to go and right now she loves to be outside. Also, I increased her medicine that makes her hungry and she ate one whole slice of pizza and three cookies. Normally, I do not like her to have so much junk food but I'm glad she is eating, hoping to see her put on some weight. She really needs it in her legs.  So many good things happening, eager to see what this month holds. 

Thursday, August 2, 2012

We Have Come So Far

   It is hard to believe that just two and a half months ago Georgia could not even hold her head up or sit up. She had to be assisted to do everything and now she is almost walking. When I look back it is hard to see why I was so upset, when things look so bright now. Why did I ever doubt that God would see us through. All along He was holding my hand, telling me to be patient. And I guess that is what everything boils down to, patience and my lack thereof.

   All Georgia wants to do is walk and explore. The light that had all but vanished from her eyes is back. Today, I witnessed her stretch out her right hand and grasp the baby gate with her fingers. Is there anything impossible for God? I think not. Georgia is a walking (soon to be talking) miracle. She has determination that I have never seen anyone demonstrate, she sees something and goes for it. I do not think anything will hold her back.

   This year has seen a lot of ups and a lot of downs but I believe we are to see more days like today and yesterday. I know that I do not deserve all that the Lord has seen fit to give me. To finally have a two-sided relationship with my daughter is nothing short of amazing. I am ready for a four year old little girl, ready for the make-up, the tea parties, the telling me no, the I wanna do it myself Mommy, and all that entails.

   Why do I ever doubt that I serve a BIG God who can do whatever He likes and when He sees fit, He will give me the desires of my heart. Not a moment too soon.

Wednesday, August 1, 2012

Many Beautiful Blessings

  
   It has been a while since I last posted, I promise to stay more on top of it. It has been crazy around here, it seems at the end of the day all I want to do is crawl in bed and sleep. In order to keep a positive mindset and to note all the progress Georgia makes in the coming month, for the next thirty days I will find something positive about the day or something new that Georgia does.

   Last week we had a follow up appointment with Dr. Lee. To say that he was pleased would be an understatement, I left out of that office on cloud 9. First we discussed that Georgia has not had one seizure since May 10, then we discussed her meds (Lamictal) which he lowered to 25mg twice daily from 40mg twice daily. He said only 3 more months and she will be completely taken off her meds, can you believe that? Sometimes I cannot, we have been steadily giving her meds for 4 years....He is a little concerned about her weight (which accompanies her illness) so he decided to put her on an antihistamine which should make her ravenous (his words not mine). We started that and just as he predicted, she eats a lot! We also discussed the fact that she is more social and all around "with it". I told him that she gives kisses again and shortly after I told him, she leaned in and kissed my cheek. Nothing more beautiful than feeling and seeing the love you have for a child returned. At long last. Dr. Lee wanted her to give him a kiss, she didn't but it was really nice that he wanted to let her. One thing that was concerning me was put to rest, Georgia has started doing this head shaking thing, almost looks like she is shaking her head no, but she does it randomly. I was explaining it to them and they were like I do not know what that could mean but if Georgia had picked up some autistic behaviors not to worry because they would fade in time. Whew! Huge sigh of relief! He also told me not to get hasty with a diagnosis. To that I replied, you do not have to worry about that, I am in no hurry. Then after he told me that, Georgia shook her head like she was doing and all at once, they told me that is nothing to be concerned with.

   Last time I posted Georgia was crying A LOT! The day after I posted that I was going to change my attitude towards things and choose to be happy, she stopped crying. I mean completely. In fact, she hardly cries at all now unless she is frustrated. Many wonderful things have happened since then, she is walking very well. It is not necessarily pretty yet but everyday she is getting stronger and stronger. That is all I can ask for. She is started to walk independently. Also, she has started pulling herself into standing position. It is like she is a baby again and has to start from scratch. Yesterday it looked like she was ready to take off and run. She answers to her name most of the time and she in actively interacting with others. I look at the beautiful relationship between her and her Daddy. It is like they are on the same wavelength or something. He can make her laugh with just a silly look or a silly phrase. Sometimes I feel envious because he has that with her but I know in my heart we have a different but just as beautiful relationship. The other day she wanted to walk, I wanted her to show me where she wanted to go and she led me to her high chair and started laughing, I said do you want a snack? It was awesome! Her therapists are very pleased with all her progress and said she is changing daily. They have said she will not be the same child in 6 months.

   I owe everything to my Lord and Savior who has seen us through some of the darkest nights and days. He has always been with us, He has given us the strength when we could endure no more. He opened doors when we thought there was no hope. All I can say is thank you Lord. What a miracle I have witnessed, I know there are days ahead when I might feel discouraged but they are nothing compared to the anguish I felt when Georgia was seizing day in and day out without resolve.

"Keep on dreaming, even if it breaks your heart."
Isaiah 41:10 fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.


Sunday, July 22, 2012

My Choice

Today, I choose to be happy! Yes things are hard but I have to believe they will get better. I am the only one who can control my reactions to things and I want to be happy. My children deserve a happy mommy. One day I will know how all the pieces fit together because God is already there, He is on control. Today, we are headed to the beach to have some family time, I do not normally like to miss church but I think God understands that we need this, time to regroup, time to relax and enjoy one another's company. I think because our life is hard, we tend to focus on the "problem" and forget to remember that each day is a gift and we do not know when we will draw our last breath. Yesterday it occurred to me, I prayed a long time for something and I never got an answer but when I thought about it yesterday God had given me what I asked for, I just had to fully let the problem go and rest in His hands. I also heard a song that I have heard many times before and this time I really "heard" the song, Georgia has a purpose in this life that no one can fill but her. God knows what He needs to do to draw us closer, sometimes people feel Him best when they are having good times in their life, and in others or in my case I draw nearer to Him because I am struggling and I need Him more now than I have ever needed Him. All around me, I see quotes or things (winks from God) that tell me this is only temporary. Things will get better and our season is soon to change. In fact, last night I had a dream that Georgia just stood and walked and was able to use her hand and arm. I feel like God talks to me through my dreams. I rest in Him, He gives me my strength. Please bear with me as I go through this, I want to be that person that I was before Georgia had her surgery, full of hope for the future and unwilling to lose my heart or faith. "Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16

Tuesday, July 17, 2012

It's Hard

Hello! I wish I could fill this post with all of Georgia's accomplishments, however that is not the case. Georgia is fussy and cranky and is hardly happy at all. It's sad. It's hard to not fall into despair, I know things are going to get better but living day to day is rough. And I feel bad for Conerly because I do not know where to draw the line, almost everything we do Georgia gets upset but Conerly loves, I do not want him to grow up resenting Georgia. For the first time since Georgia's illness began I prayed for God's Will to be done, I know He knows what I want but I have never thought to ask for what He wants for her or us. I am glad to be home and looking forward to the weekend, Sean and I need some time to ourselves. On Sunday we are going to take the kids to the beach, we do not like to miss church but we really need this. Please continue to pray for Georgia.

Wednesday, July 11, 2012

Let Go and Let God

As I am sure everyone knows, we are back in the hospital for shunt complications. Last week Sean and I were alone, for the first time since all this started happening with Georgia. We had just ourselves and it was hard. We thought all of this was behind us, but yesterday on our way to therapy Georgia started throwing up and then dry heaving. I panicked, I might not have done so but Georgia had been sleeping the greater part of yesterday. The exact same symptoms from last week. I called the doctor and he advised me to go to the ER or come to Orlando. I know last week that Georgia went down hill very fast so I did not want to take a chance of that happening this time. They did all the preliminary things they did last week and gave her some Zofran. Around 9:30 they told us they were going to admit her, they would watch her through the night and set a plan in the morning. God has really been working overtime and Georgia is feeling better today. Able to eat, play, and be her typical self. We were not going to tell anyone because it is hard for us to think about let alone everyone else. We just want to fade into the background. We want to move on with our lives, put this in a little box and put in he attic, something to discuss later in life but not to keep living. This week over and over again I have been reminded to trust in God, to keep my faith, and that nothing is impossible with God. God has been working over time on me, I believe it is my attitude that has brought this upon us. As much as I would love to wake up to Georgia talking and walking and being a "typical" child, I think that this is going to take time and a lot of work. God wants me to walk this path and I need to just start thinking positively and give Georgia the best life that she deserves. Hopefully this wil be the last time in the hospital, ever! She is responding to her name and she is making eye contact. I was reading about this child who had a hemi and gained 1.5 years of development within two months. That is very encouraging. I pray that this shunt will work properly and that her brain can recover and Georgia can start learning. I know this is going to take time. God has not forgotten us, he hasn't left us, He is holding us up. As I was reminded yesterday, God has enough faith in me to let me have her and I need to have enough faith in Him to let Him do His beautiful work. He is sure to complete this beautiful work and we will have a testimony. To fully appreciate the mountain tops I need to finish my stay in the valley. Thank you for all the prayers, Sean and I have felt them all around us and with comes a wonderful peace that surpasses all understanding.

Friday, July 6, 2012

Scary 12 Hours

So my 4th of July started out pleasant enough. We were at home and that is where it started going down hill. Georgia woke up fussy but I chalked up it to being sore still and not getting her pain meds in the middle of the night. So we gave her the Tylenol and about 15-20 minutes later she vomited it up. I them thought it was because of her not eating much and taking the meds on an empty stomach. So Sean gave her a bath and she ended up going to sleep. A little weird for her but again we thought she just needed more time to recover. Around 2 pm she ate and got her tylenol. She threw up again. Again we thought she just could not handle the meds. She layed around all day which is not normal but again we chalked up to recovery. Around 6:30 I told Sean we need to call the doctor, something is it right. The doctor agreed and was going to call us in some Zofran. Being that it was a holiday our pharmacy was closed. God was watching out for us, Sean had to call the doctor back and tell him it was closed. The doctor told us to take Georgia to the ER. By this time Georgia is cycling between throwing up and sleeping. There is nothing left in her stomach. Poor baby, she is pale and withdrawn. We know something is terribly wrong. We arrive at the ER, we are the only people there. Again, God was watching out for us. Preparing things for us that we do not know await us. The nurse takes us back immediately. He tells us she is really sick, her shunt might be failing. Unsure of what this means I get really upset. He is honest with us. We get back in our room and about 5 people pile in behind us, I am not sure about you but this never happens when we go to the ER. Usually it's a waiting game. We know this whatever it is, is serious. They immediately take usual to have X-rays taken . Then they take blood from Georgia and start an IV. She gets some fluids which help her immensely. Then this odd resident neurosurgeon comes in and tells us he has to preform a shunt tap. He tells is it will not hurt her, most likely she is still numb from surgery. Anyway, he sticks a needle right into her scalp. Not hurt, my booty! Georgia screamed and started writhing around. Hard to watch him do this, even harder to watch Georgia screaming. After what seems like an eternity and watch him struggle to get fluid he pulls the needle out and says well that was not successful, part of me felt like he was incompetent. We then see another neurosurgeon who tells us that Georgia's shunt is not working, it might be clogged or has failed completely. They need to do emergency surgery. We do not have time to drive to Orlando. Gulp. We were nervous because no one has touched Georgia but Dr. Baumgartner. We ask him to leave, we need time to discuss things and to pray. By this time I am usually questioning God, this time I tell Him I am not going to question or to doubt. I am going to trust, complete and utter trust. Shortly thereafter they take us down for an MRI. Then they wheel Georgia to the OR, Sean and I leave her once more in the hands of a surgeon and God. We walk to the waiting area. It then sinks in, we are having emergency surgery I have her shunt replaced. They also have to put in another EVD to ensure that this shunt is going to work. The surgeon working on Georgia tells us the risks, all I hear is coma, stroke... Fast foreword back to the waiting room, I start to sob uncontrollably. How much can my weary heart withstand? How many times do I have to sign consent forms to have my baby worked on. What if this is the last time? Will God take her home this time? I call my pastor. He comes to sit and wait with us. He is the epitome of what a good Shepard should be. They told us the surgery would last approximately 2 hours. Around 4:30 the butterflies and anxiety sets in. I can hardly sit still. 5:30 comes and finally the surgeon comes into the waiting room. Georgia came through and is doing well. I start crying, crying those happy, relieved tears. Tears of joy! Georgia is alive! Praise God! He did not take her home yet. I have more time with her. I turned a page in the wee hours of July 5th. I turned my expectations for her off, I turned all the mourning for the child I might not meet down here in Earth. I have to accept things are as they are. I can still hope that things turn around for her and she at some point will be a typical child but for now I will just relish in what is my beautiful, loving, smart, stubborn, Love Bug.

Monday, July 2, 2012

Minor Setback

It's been a while, it's hard when "real" life hits you square in the face and you find that you have a lot less time in the day than you thought. It's hard for me to get back into the swing of things and to adjust to this thing they call a toddler :) For me, this is like the first time being a Mommy, Georgia had never been so active or clingy or loud or anything resembling Conerly but boy do I love and adore every moment of it. I have to do a little bragging here, once we adjusted to being home, Georgia's recovery has started picking up. She has been pointing but part of me felt it was kind of a fluke until Friday when she pointed at me, actually pointed then crawled into my lap. Most beautiful thing ever! She also waved at my sister, I didn't get to see it but my sister was waving in her face and Georgia mimicked her. She is also responding to her name again and she localizes to every sound she hears. These are the building blocks for language. She loves to cuddle in her bed under her blanket, she actually squeals when we are going upstairs to her room or when we get out of the car and she sees we are at home. We went swimming yesterday and she was so relaxed and enjoying herself. All beautiful and wonderful things. Best of all of course No Seizures! We are still in the process of relearning to walk but I know this will come with time. As the title of this post suggests we do have a minor setback. Sean and I noticed that Georgia has not been quite herself, I chalked it up to adjusting to home and being around to Conerly. But Sean told me I needed to fall Dr. Lee's office and explain the situation, Sean suspected hydrocephalus. Of course Amy told me what to look for before we were discharged but once we got to Brooks and they started mentioning autism all those symptoms of swelling flew out the window and I started obsessing over he possibility of autism. Anyway, I made an appointment with Dr. Lee and Dr. Baumgartner and they agreed there might be some hydrocephalus. So last Tuesday we went to Orlando and had a CT done, we were praying this might be he problem bc out of all the options put before us this is the one problem that can be corrected. Normally we would never pray for a "problem" but this was exactly what we prayed for. Thank you Jesus! With that being said, we are on the way back to the hospital to have a shunt placed in. I am scared and nervous of course because they have to open her head once again but I am confident that Our Heavenly Father will see us through and He will be guiding the surgeon' hands. I am praying that Georgia will not get what they call decompression sickness, which would make her sicker than make her better. We would love to be home by the 4th of July. Either way as long as we get our Bug back healthy and happy we are content. A few prayer request: 1. For God to be with the surgeon 2. Bring Georgia through the surgery 3. No decompression sickness 4. For Sean and I Thank you all for all the prayers.

Tuesday, June 26, 2012

God Winks ;)

Had to get out of my own headspace for a while, I have been angry! Not just a little angry but very angry to the point of wanting to scream at the top of my lungs. It's just not fair! I think myself around in circles trying to reason things out in my head. I started reading a book titled, When God Winks at You, I have yet to finish it. Anyway,yesterday two people called completely out of the blue and they both said something along the lines of nothing is too big for God and He can change any situation. This was very helpful. Then this morning, I prayed that God would speak to me and show me what to do, I don't even know what to pray for anymore, sometimes I just sit in the silence and pray God knows what is in my heart. Anyway, God answered my prayers, better than I could have expected. That morning I received a package in the mail, my sweet and caring friend that I met in Columbus. She sent the kids 2 shirts and this wall hanging that says,"Do not fear, I am here with you always." Exactly what I needed. In that same mail I received a newsletter from an evangelist and basically said the same thing, "Do not fear." What a loving father we have, even in he midst of the craziness God is still with us and is right there bearing the pain with us. Having a child with special needs can be so draining at times but at the end of the day when Georgia cuddles with me and looks into my eyes all the worrying and anxiety of the future drains away. It is then I can feel God the most saying its all ok, I'm not going to leave you. I do not believe in coincidences anymore, it's a special wink from my Loving Father.

Tuesday, June 19, 2012

BIG Adjustment

Its been a few days since we came home, Friday was not so bad, but then came the days after...I would be fibbing if I said it was all I dreamed it would be. I know I want this blog to inspire people but I do not feel very inspired right now. Being home frankly stinks! Georgia yells a lot! She also wants to be held around the clock. This is impossible, I have to tend to Conerly which by the way is not the same kid I left a month ago, he was hardly standing when I left and now he walks everywhere and gets into everything. I feel so foolish for thinking that all our problems would vanish over night, wishful thinking I suppose. I feel myself in a dark place right now with only specs of light to be found. I have neglected prayer lately, I just do not understand why. Why we would have to trade one problem for another. And not just one problem but about 20. The biggest one being the unknown. I was unsure if I was going to post anything about this but the biggest worry is whether it not Georgia has autism. Yes, that is right, autism. I feel as though I am losing all control of everything around me. I need help! Help that only Go can provide and I need it fast.

Thursday, June 14, 2012

Going Home!

Tomorrow is the big day! The day we get released from rehab. I feel anxious and nervous, excited and scared all in the same moment. I cannot wait to get back to our new normal, as in no seizures. Our new adventure starts. Tomorrow we should get discharged around 11 or so and home no later than 2. Happy day! I'm excited to see how Georgia will react to being in her own space, on her own turf. Only God knows. Georgia's therapists are really pleased with all the progress she has made in the last week. She is making better eye contact, interacting with the environment around her, babbling more, she is better able to regulate her emotions, she is doing some ancipatory play, and on and on. I know she will continue to get better and stronger. I will keep you posted on how we fare this weekend. Please forgive me for not updating much these last few days, I'm beat at the end of the day. Please keep us in your thoughts and prayers.

Sunday, June 10, 2012

One Month Seizure Free!

Can you believe it? One month seizure free, almost too good to be true. But by God's mercy, grace, and healin hands it is not, it's a miracle. The miracle that many people hoped for and prayed for has happened. Please forgive me if I get down at times because of the weakness in her hand and leg, sometimes I forget God did take a week to create the Earth and my human impatience sometimes gets the best of me. I am just thanking God for all the work He ha already done and for he work He has yet to do. Right now Georgia is getting ready to go to sleep after a long weekend of museums, shopping, lunches ate outside of the hospital and spending time with her family. She is playing with her dolly that she picked out today, the first doll she has ever really played with. I look back at this past month and it has been a struggle at times but I also look at all the good things that have happened. First and formost, no seizures. Starting to make good eye contact, focusing on the world in front of her, smiling, laughing, making more verbal sounds, giving hugs, pretending to use her play phone, and the list goes on and on. I have to Praise God for all these wonderful things He has given us, the chance to give Georgia a great and productive life. A chance to have her own family. A chance to go to college and fulfill all her dreams. I cannot wait to see what the next so months brings, the next year brings, the next 20 years bring. I see a whole lot more laughter and not so many tears. As I have said on the past and will keep reminding myself, "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. Jeremiah 29:11-13

Friday, June 8, 2012

Giggles, Grins, and Laughter

Today was such a great day! Georgia hardly fusses in her therapies anymore and she walked a great distance without crying much at all. Of course she still needs assistance but not nearly as much as when we first got her. Sean's grandparents and mom came to visit and we got to take Georgia to Firehouse Subs. I was a little nervous that people might look at her scar and ask questions but no one really paid us any mind. This puts me a little more at ease for when we go home. This afternoon we were sitting around the duck pond and we were laughing and Georgia joined right in. She then laughed the rest of the day for no apparent reason at all, just the pleasure of hearing herself laugh. This makes me so happy, I told Sean that angels must be entertaining her. I met with the neuropsychiatrist and he gave me the results of her assessment, not as good as I would like but it's ok, I knew we would have a long recovery ahead of us. Cognitively she is at a 6-8 month level and 3-4 month language level. But he said she is basically picking up where she left off before her brain was hijacked by the terrorist aka seizures. I'm still going to praise the Lord for healing her and I know He is going to continue working in her. He is faithful to complete the work He has started.

Tuesday, June 5, 2012

Special People

   Tonight's post will be a little different, I would like to focus on some of the people that we have met here at Jacksonville. For privacy purposes I will not use their name rather an initial, and I would like to tell you some of their story.

1: J and her son J: J is a great mom to an incredibly strong boy J, J has tumors, there are only about 5% of the world population that have the same disease as this young boy. He had to have the tumor cut out of his brain and now he is recieving proton therapy. If you were to see J on the street you would not even be able to tell he is sick or that it will be a life long process with him, he is happy, joyful, funny, and most of all he loves life. What an amazing spirit this young boy has.

2: S is a young teenage girl who has a disease that causes tumors to grow in her body, she told me the name but I forgot, please forgive me. She gets a little down because of the pain in her body and that she has some facial weakness but again she is happy. She has had 5 surgeries in the last 4 years. She has a sense of humor and at her school she is apart of the academics team for her school, last year they placed 4th out of 80 schools, pretty impressive and she told me that she did not even study.

3: D is an older woman who had a stroke around the beginning of this year, she is so happy though and ready to go home, she had to have part of her skull taken out because her brain had swelling and she has to wear a helmet in case she were to fall but she laughs it off and says she cannot wait to throw it away.

4: J is a young teenage boy who was in a horrific ATV accident, he is paralyized and his parents will not know for about 12 months how J will fare. I have had prayer with them and they are some of the nicest, most attentive parents I have ever met. I think in another lifetime we could have been friends, they remind me so much of myself and Sean. Who knows? We might still be able to be friends, only God knows. Please pray for this young boy and for his parents to have the strength to endure this trial set before them. They have a long road to recovery ahead of them.

5: Sharon is one of the nurses that we have and by far the best nurse we have here. She has two sets of multiples, twin boys and twin girls. Can you imagine? I can't! I have one of each and that is enough to keep me busy, she calls her children her busy blessing. She is one of the nicest people I have met and she loves that Sean and I are always with Georgia. Sharon says that she is glad that Georgia has us because that means she does not have to worry whether Georgia will be taken care of when we get home.

6:Ashley is our physical therapist and we love her. We were talking yesterday about why she became a physical therapist and she says she just knew as soon as she shadowed one that this was made for her. She believes this is the job that God intended her to have. She has a quiet, reserved way but we love her and I can see Christ's love shining through her.

There have been so many amazing people that we have met that we otherwise would have never met. I believe that God puts people in your path to lift your spirits, to inspire you to keep believing in miracles, and while they are only in your path for a moment in time, they leave a lasting impression in your heart. "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
― Elisabeth K├╝bler-Ross

* Today Georgia did well, she passed her swallow study so now she gets to drink whatever liquids she wants, no more nectar thick :) She is getting stronger on her legs, more walking and less throwing a fit. We also get a weekend pass, we can take Georgia out of Brooks as long as we stay close, so no we won't be going home but we are pleased just the same. The discharge date we were given is still a go for now, I do not forsee why we won't get to go home that day. Please keep the prayers going we still need them. Thank you!

Monday, June 4, 2012

Tears of Joy

   A lot has happened in the last two days, first Georgia pretended to play with her phone, as in putting the phone up to her ear, I thought at first that it was a fluke but then she did it several more times, not a fluke! She is taking more steps with both her legs; she is doing this without being prompted by the therapist. She also is relearning how to manipulate Mommy into getting her way, she wanted my glasses and I kept jerking my head to the side so she could not get them, she then decided that she was going to kiss me and then when my guard was down she stole my glasses. I was so happy that she kissed me I forgot that I did not want her to have my glasses. She has not kissed me in 6-8 months, just before her seizures changed and before her meds got messed with. Ahh, sweet relief to see that my child loves me and still knows how to get her way...I will take it!

   Today, little Miss Buggy woke up in a great mood, I think she decided Mommy needed to see her happy. A happy child equals a happy Mommy; when Georgia ain't happy, ain't no one happy! Today was one of the best days I have seen Georgia since before the surgery, it gives me hope that Georgia will be completely restored. God is so good, He knows when we need to be lifted and He gives us that boost just in the nick of time. Georgia did all her therapy in stride today, not to say that she did not have her meltdowns, she did, but she was able to recover and soothe herself quite quickly. I was quite impressed with was her last speech session, she was able to pick between two objects, even when she has to look to the right side. This is great progress, like I said previously, she was ignoring that right side.

   ASSESSMENT!!! I have come to hate those words, as a Mom of a child who has special needs, yes, it has taken me quite some time to swallow those words, I hate assessments because it reminds me how far behind my child is compared to her peers. Anyway, I heard that dreadful word today and I mentally prepared myself for the worst, so we got seated in the room and the doctor pulls out this large booklet and his suitcase full of "toys" used for the assessment and you know what my little Love Bug does? She completely amazes me! Why should we ever doubt that we serve a Big God, He is once again showing me how big He is and He is still in control. This time Georgia got a lot of 1's circled and not so many 0's (1: child has this skill 0: child lacks this skill). She localized to a toy by hearing the sound, she looked for something dropped on the floor, pulled a toy by a string, picked between two objects, pulled a rag to get another toy, she played with blocks, pulled a block out of a cup, she kissed her reflection in the mirror, and many other things. The doctor was very impressed with her and he told me that while we will have a rough estimate of where Georgia is now, it is a steady moving target, as we get further and further out from the surgery she will continue to learn and grow.

   To say the least I teared up a few times today. Georgia is doing so well, she makes me one proud Mama. We are only three and half weeks out from surgery and she is doing so much, much more than what she did before the surgery. So while we still have a long road of recovery left, I love every minute of getting to know Georgia all over again. And all the progress she is making is just amazing! Tears of joy. I was reminded today by a ceiling tile, 1 Peter 2:24 "He himself bore our sins in his body on the cross, so that we might die to sins and live for righteousness; by his wounds you have been healed.” Georgia has been healed and I will continue to proclaim that.

Wednesday, May 30, 2012

Saddest Sad Face

Just a quick update, Georgia did really well in therapy today, she is starting to warm up to the therapists now, thank you, Jesus. I cannot tell you how good that is because it makes me feel like not such a bad guy anymore. During our afternoon speech session Georgia was looking in the mirror at herself and she kissed her reflection, we all clapped and cheered her on, this proved to be too much for her and she made the saddest sad face EVER! It was cute though, she pouted her bottom lip and everything, I can not tell you the last time I saw her make this face. Even though it was sad it makes me happy to see my little Love Bug showing more emotion. Then in the garden after therapy ended for the day I was praying and she looked at me and put her arm up and I said what is wrong and you know what she did?!!! She hugged me, really hugged me. That has never happened, usually I am the one who wraps her arms around my neck, God gave me a special gift through Georgia today. After supper tonight we took some books out to the garden, we read and did some stretching, we worked with more kneeling and reaching across the right side of her body. She even thought it was a game when I took her bink away for her to grab. I'm so proud of her. We got a discharge date, June 15, nothing is set in stone of course but it would be so fabulous to go home on this day. I'm scared but excited at the same time to see how much she will progress in her own environment. We gave her some melatonin tonight to help her rest and she is resting peacefully now, if only this place were a lot more quiet maybe I could rest. I have a prayer request, tonight a friend is finishing the second part of her son's hemispherectomy. I know they have a long road ahead of them, her baby, Sutton, is only 7 months old so I'm not sure if he will have to go to inpatient rehab or not but please pray for their family.

Tuesday, May 29, 2012

Beauty from Pain

   Hello, I know it has been a few days, not much to update and just soaking everything around me in. I do not feel as down as I did but I still feel blue. A family friend called me Monday night and told me that when Georgia starts to feel restless to read Psalms to her, so for the last few nights I have done that and it has helped me. Not suprising though, that is what the Word is for, to bring us hope in time of distress. Sometimes I feel like such a fraud, I would like to pretend that I have it all together and I am sailing through this process of rehab but truthfully I am not. I feel restless and antsy, I feel as though we have reached our potential and sometimes I think that I have asked God for too much and I just need to accept things as they are. I feel very far from God, I wish that I could go back to that mindset in which I just prayed that God would take the seizures and we could handle everything else but then I look around and I want more. I want my Georgia, the child that I gave birth to, that was healthy and happy and far exceeding her peers. I have asked if that was a predictor of how things will be once the seizures were stopped and I have not been told a straight answer, the doctor did tell us that our IQs and our involvement with our child did have a huge part to play in the recovery of Georgia...while I may not have a huge IQ I am a very hands-on Mommy. I still do not know the "plan" and how I wish I did. I am continuing to pray for guidance and patience and not to be angry.

   In the midst of all this, I see Georgia's scar and I cannot help but think it is one of the most beautiful things, I see God's thumb print. When I first saw it, that first night after surgery, it terrified and scared me, I almost fainted. However, because of that scar I can see hope, when there was no hope for my daughter, I see this visible sign that there is hope for her, for her to have a normal life, normal friends, normal fears and normal moments in time that she would not trade for anything not to have that scar.

   It seems crazy to think that just a few weeks before we saw Dr. Lee we were told there was no hope for Georgia, her seizures had no beginning and no ending and she would seize until she eventually died. Fast forward two months later and we are given life, when we did not know how we were going to live our lives out with Georgia seizing every hour of every waking day, we are almost three weeks without one seizure. I am still holding my breath and everyday her pediatrician here kindly asks if we have seen any seizures and I tell her no, I am still waiting. I hope and pray that I am waiting in vain. Every little thing she does, I am scared. I hope this will pass as we get further and further out from  surgery. From death to life, God is so good. While I am here feeling sorry for myself, God is on His throne and He wants to hear from me, He wants me to cry out to Him, He wants to comfort me. So why do I feel so estranged from my Father? "Do not grieve, because the joy of the Lord is your stronghold." Nehemiah 8:10 "Wait for the Lord, be strong and courageous. Wait for the Lord." Psalms 27:14 In times like this I must remember to praise Our Father who not only gives but also takes away, "I will thank Yahweh with all my heart; I will declare all Your wonderful works. I will rejoice and boast about you; I will sing about Your name, Most High." Psalms 9:1-2 Please pray for me and Georgia of course. God will get all the glory no matter what.

   I almost forgot, Georgia is sitting up completely unassisted, she is looking more to the right now, whereas she had all but ignored it before, she is finger feeding, she has grown quite attached to her blanket (read she takes it everywhere with her), she props herself up on her elbow from her stomach  she is able to kneel on her knees, she is rolling completely over in the bed and I am not sure if I mentioned this before but she is able to sit up in bed from laying down. We are looking for more purposeful movement from that right side, it's taking a little longer than I would like but I'm still certain it will happen. Hopefully, tomorrow we will be given an estimation when we will be discharged.


This is a great song, Stay With Me by Barlow Girls. My theme song for now.

Hope is, getting through this night
And life is not dying in this fight
I'm begging you to deliver me ooh ooh ooh
Confused why you won't take this pain from me

My steps never felt so hard
The end never look so far but
If you won't take me out
Then please take me through this

Stay with me so I won't leave
And make me see that this is not forever
'Cause all I need is your love pulling me

What is the reason for this night
Is hope found in moments with no light
Does strength grow in our greatest fears
And God I pray something good will
come from this pain

My steps never felt so hard
The end never look so far but
If you won't take me out
Then please take me through this

Stay with me so I won't leave
And make me see that this is not forever
'Cause all I need is your love pulling me

With you here I know
I don't go alone
I am yours and so
Through the fire I'll go

My steps never felt so hard
The end never look so far but
If you won't take me out
Then please take me through this

Stay with me so I won't leave
And make me see that this is not forever
'Cause all I need is your love pulling me

Stay with me so I won't leave
And make me see that this is not forever
'Cause all I need is your love pulling me

Saturday, May 26, 2012

Tightly Wound

I approach this post a little differently tonight, I must admit I have been very depressed while here at Brooks. I know I had high expectations but I just thought that once Georgia's seizures stopped we would make leaps and bounds of progress and she was but I feel we have platued for the moment. Does not help that we do not get much therapy on the weekends. I thought Georgia would be so happy not to be seizing. I cannot really feel my child out, at moments she is so happy but then it fades just as quickly as it came. I do not understand. Everyone keeps reminding me that she just had major surgery and she has to adjust, adjust to her new body with the weakness, adjust to life without all the white noise in her head, adjust to not being home for the time. It hurts me to see her getting to agitated when her brother comes around. How is it going to be when we get home? Is she going to have a hard time getting used to home? What happens when we get home? Am I going to have to hover her and help her walk? I just wish I knew. Is it wrong of me to ask God that He completely restore Georgia when He has already done so much by healing her of the seizures? I wish I knew the "plan". There has to be more to this. I got a little reprieve today, I got to celebrate Conerly's first birthday with him since I was unable to see him on his actual birthday. We found a cute 50's diner, took him to o2b kids, which he loved and I found out he is scared of heights (surprising right?), then we took him to BABW to make a monkey. He had such a great day, we finished off our day with birthday cake and a nice bath. I do not know what I would do without his smiling face and cheerful spirit. God gave me him for a reason and I am so grateful. I do feel better and I can hope that when I feel down his week I can look to the future and see that this will not be forever. If God is not going to take me out then He is going to take me through.

Thursday, May 24, 2012

Rehab Take 2

Last night was rough for Georgia. She did not sleep that well and was up every hour or so. I think she is scared of the dark now that she is more aware of things. I would reassure her and then she would go back to sleep. Today Georgia was evaluated by all the therapists and they will write up their plans as well as the goals I would like to meet before we go home. We start "boot camp" which is several therapy sessions throughout the day. Hoping that tomorrow will be a better day. Today was really hard on me. When Georgia is down I am down. And boy was she down, she was fussy all day. I think she might be experiencing stranger anxiety and with all the new faces she is scared. I think to myself is the three years of constant seizures has damaged her brain, and while I once had a healthy happy child has been replaced with a shell. I see these happy children full of life and so excited for new things and I do not yet see these things in Georgia. Please pray for me. On a better note, Georgia did laugh when we were snuggling at bedtime and it lift my spirits. She also was able to pull herself from laying down to sitting up with no assistance. She also moved her entire leg when I tickled her under the knee. She also loves going outside and sitting by the lake.

Wednesday, May 23, 2012

Brooks Rehab

Nothing new to update, we were transferred to rehab today and are settling in to our new home for the next few weeks. Hoping to start making lots of progress and get discharged to home. Please pray for me, Conerly's birthday is tomorrow and I know he will be here sometime tomorrow night but I am sad I won't get to spend the day with him.

Tuesday, May 22, 2012

Completely Renewed

   Georgia slept all night, we woke up to a pleasant suprise the swelling was about 75% decreased and this afternoon it had decreased to about 95%. She looks beautiful, she acts like herself and Mommy feels completely confident in our decision to have the hemispherectomy. Yesterday was a hard day for me, I did not want Georgia to have a shunt put in but at the end of the day I had to pray about it and lay it down at the alter and trust that My Father would take care of it. He did! Why did I ever doubt? He tells us to cast all our cares upon Him, His grace is sufficient. Nothing is too big or small for Him.

   We are getting discharged tomorrow, we got the a-ok from Dr. Lee. He came into our room and he was so happy to see Georgia and he said, "Well she did not want a shunt did she?" Then he stuck his head out the door and happily called his PA and said, "You have to come and see this!" He is so pleased with all her progress. He will see us two weeks after we leave Brooks and then three months after we go home and yearly after that. At her three month visit he will adjust her dosage of Lamictal.

   I sit in amazement at how far we have come in just 12 short days, Georgia is not seizing, she is more interactive, she makes great eye contact, usage in her right side is coming back, and I feel in the first time in a long time that I can live, actually live, not worry about what tomorrow will bring because I know nothing can be as bad as living with a child that constantly seizes. Life is going to be so sweet. I also know that I am strong, I can handle things. I can praise God finally for the seizures because I can see what He was doing. He needed to put me through the fire so that He could refine gold.

Monday, May 21, 2012

Minor Setback

   We have been doing so good, Satan has to gain a little control over the situation. Georgia has some swelling that is concerning to the doctors and myself as well. She did not sleep well last night and was up at 5:30 this morning. She has been a little more fussy today and not eating well. She cried when I would leave her, this is so amazing to me, I finally feel that Georgia knows who I am and for that I am so happy. So with that being said she wanted me to hold her all day; she took a nap on me and when she woke up the swelling was significantly worse, I called the nurse in and she called Amy, we started Georgia on a medicine that should help decrease fluid in her IV and tomorrow Georgia will go down stairs for a CT scan. We will then decide if we should stay on the medicine, replace the drain, or if we should place a shunt in her brain. The best option would of course be the medicine. I keep praying and I hear in my head, "Trust in the Lord, Trust in the Lord." I am going to keep trusting no matter what. God has this. Tomorrow is a new day and we will worry about what tomorrow brings. I cannot do anything about it anyway, it's out of my hands.

Sunday, May 20, 2012

Drainage Out!

   Georgia never ceases to amaze me, this morning Amy came by and said we could remove her drainage. She told me we could medicate her or we did not have to, the choice was mine. I know that Georgia is such a trooper and I knew that she had family coming by so I did not want her to be dopey so I said no medicine, Georgia fussed a little when we laid her down but when the drain was pulled she did nothing, she flinched slightly when the staples were put in then she was good. We got to wash her hair bedside. Overall, one of the best days so far, hopefully tomorrow we will get discharged to Brooks. Keeping my fingers crossed. Georgia is able to sit up on her own for a few minutes before she gets tired, she is also able to pull herself into sitting position with little to no help. She is able to put more weight on her leg. She is doing so well I am so proud of her, my little angel.

  Unable to understand why Georgia's surgery got pushed back God keeps showing me.  I was able to talk to another family, here from Panama, about the effects of what will happen if seizures are left untreated. This precious little girl is 6 months old, she started seizing on April 26 and her surgery is set for Thursday May 24. That is simply amazing! God is so good. Not even a month will go by before something is done. I sit in amazement at my Father's feet. I feel so blessed to be able to help other people. Just as the Bible says, "Love one another as I have loved you." John 15:12 And in Matthew "In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in Heaven." Matthew 5:16

   I have met so many people here, angels in disguise, that I may have never have met had it not been for Georgia and this trial, as I have said before I would not have chosen this for my child but I am so glad to be on this journey with her. I love Georgia, my little Love Bug! I will always try and help anyone who will listen.

Saturday, May 19, 2012

Rock Star!

   This post will not be long just wanted to let everyone know Georgia is doing so well, we were able to stand up quite a while this morning, she giggled, smiled, sat up, and is just overall awesome! I cannot believe that we are 9 days post op and no seizures, not even a glimpse of one. So glad that is a thing of the past now. I cannot believe all that I was missing out on, Georgia responding to her name, Georgia looking me in the eye, she actually giggled at a video of herself today. I have so much to be thankful for. We have completely clamped off her drain so her head is doing all the work of absorbing the fluid and just for kicks our night nurse checked her ICP (Intercranal Pressure) and it is a whopping....1! The range is from 0 to 10 and Georgia is one, that means there is like no pressure in her head. My little trooper, I praise God for all the He has done and all that He will do. What amazing God we serve.

   As for me, I feel so at peace, last night Sean and I were playing with one another and I thought to myself: when was the last time I felt so free, when was the last time I felt so joyful and hopeful and not weighted down by the stress of Georgia's illness? I can honestly tell you, it was 3.5 years ago, the day before Georgia's first seizure. Still cannot believe that we are here, Georgie not seizing, starting to learn again, so much better than we were almost two weeks ago and still better tomorrow. Seizures seem like a life time ago, or like someone else was living that life. All I can do is say, "Thank you Jesus!" My heart sings to my precious Father for delivering us and setting us upon a rock. My faith was not where it should be and the Lord has strengthened my faith ten-fold, I will never be the person that I was before this illness chose my child but I do know that I am stronger, more patient, more compassionate, humble but you know what? I am all around a better person for this, God has shown me how to praise Him through the storm. How to thank Him for the trials. Georgia, as I said before, not because you needed us but because I needed you! Praise to God.

 Lego Man!
 My two besties!
 Looks like Georgia is looking right at Conerly and vise versa, they love each other!
 My stinker winker bear!
 So beautiful, I can see some prissyness starting to re-emerge
 Crooked lil grin, my right side will return
 Aunt Sabrina, Uncle James, and Cousin Connor
So proud of my hero!







Friday, May 18, 2012

So Happy I Could Burst

   My little hero had a fabulous day, actually better than words can describe. She slept all night last night and woke up in a great mood, she did so well with PT today, stood up with assistance for about a minute or so, ate a good amount of her breakfast, and drank a lot. She looked more like herself and has completely revived my spirits. She sat up by the window and was looking outside, she cooed a lot today, she answered to her name, made great eye contact, and lastly she laughed! Belly laughed! Mommy is on cloud nine to say the least, I can't believe I have been living without this for the last week. We have gained almost everything back and then some, for Georgia to answer to her name is awesome. She is also tracking with her eyes and when she drops something she looks for it. Simply amazing, all I can say is Praise God! I cannot stop thanking Jesus because He has given Georgia back to us and He is going to continue to work through her until she is completely restored. "For I know the plans I have for you, declares the Lord, "Plans to prosper you, to give you a future and a hope," Jeremiah 29:11

Here it is folks, Georigia is laughing!

Thursday, May 17, 2012

Good Day

   Georgia was in fairly good spirits considering that she had not slept in almost 24 hours. I was a mean mommy and I made her work through her irritablity and frustrations today. I hate being making her work when she is having a bad day but I know she will thank me later in life for this, for pushing her when she did not have it in herself. I am confused about what her right side feels like; the therapists said that we have to remind her body that it is still there because of the surgery her brain does not recognize that the right side but I am confused about what it will feel like for her when all movement is restored and she is able to purposefully use that side. I was talking to Mrs. Helen from church and she said after her stroke her side was paralyzed but she started feeling a burning and tingly sensation on that side before usage returned so I am not sure if Georgia feels this. She is moving her head all over now and she is able to hold herself in a sitting position if you give her a little support; Sean said she wanted to pull herself up this afternoon and she is rolling in the bed like she should. I am a little worried about the restlessness that she has been displaying lately, I am hoping that when we are able to move her around a little more then she will return to her self. Sean and I were talking about what it is going to be like for her when we take her outside for the first time when we leave here. Will she like the feeling of grass on her feet? Will she still like to swing? Will she like the wind on her face? Will it be like going outside for the very first time? All things I cannot wait to find out.

   Like I said doing well though, she smiled a little more and she cooed some, when we stood her up this morning with PT she wanted to take a step, very promising. We love all the therapists that we have met here, they are fabulous and we love the hospital, most caretakers that we have met have faith, this is so wonderful, I know God had His hand in this. Georgia is also doing well with the drainage being adjusted, I think that she is in a little more pain because of the the adjustment and because some of the swelling and bruising is gravitating down her face but other than that good. Tomorrow night will be her last dose of ONFI. Yay! One seizure medication down, one more to go. One week seizure free! Almost too good to be true but not. because God has taken care of her.  Georgia is sleeping peacefully now, cannot wait to see what tomorrow brings. I am hoping for movement to return to that right side. Only God knows but I trust Him, if anyone knows what they are doing it's Him!

   Mommy is feeling better despite being tired, Daddy brought Conerly today and my little guy was so happy to see me and his sister. He brought her a new teddy from BABW and Georgia is sleeping with it tonight. I love seeing her interact with stuffed animals. this is all so new to us. I am hoping that we will hear tomorrow what the next part of the plan is to get Georgia out of here and into Brooks.

"I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire;  He set my feet on a rock and gve me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will seee and fear the Lord and put their trust in Him. Psalm 40:1-3
So long I have waited for my season of sorrow to change and it finally is. I was not always patient but God has given me the strength that I needed to survive, He does not ask much just that you have faith and believe that He will deliver you. I have been delivered, Praise be to God!