Sunday, July 22, 2012
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
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
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
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
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.