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Zoe's Story...
Zoe Alexis Gavriilidis was born September 10th, 2007. She was the most beautiful little girl I had ever seen.. We were so happy to have a little girl. Our family was complete.Zoe was pretty fussy right from the start and she didn’t sleep much at night. We thought she just needed a little time to adjust to the world. I mentioned it to her pediatrician at her 2wk appointment. I was told Zoe just had a sensitive tummy.Between 2 – 3months of age, Zoe was so amazing. She began to coo and reach out for her toys. She began laughing out loud and sucking on her hands. She slept better for awhile too. Although she was still a little fussier than most, it was such a wonderful time in her life.As Zoe approached 3 1/2 months, she began to cry more and more and sleep less and less. Since I was breastfeeding, I blamed my diet. I started cutting out a lot of foods. Nothing helped. Zoe just continued crying. She lost interest in her favorite toys. The only thing that calmed her was to be in my arms, at all times. She seemed to hate everything. Her bath made her scream, a car ride made her furious. Sometimes, just seeing a new face seemed to set her off. Then, she started choking a lot during feedings. She couldn’t seem to sleep for longer than 1 hr increments around the clock and would wake up screaming. When she cried, she would stiffen her body so tight, it was hard to hold her. I also noticed her little hands were always clenched into tight fists.At 4 months, Zoe’s pediatrician began treating her for reflux. Over the next 3 weeks we tried several medications to help with reflux. Nothing seemed to work, she just kept getting worse. I took Zoe to several hospitals and despite my plea that something was wrong, I was told "some babies are just fussy." I was not convinced. Zoe began choking so much during feedings until one day, she decided she didn’t want to eat anymore. She began to lose weight. Finally, the pediatrician agreed, maybe something was wrong.Zoe was admitted to St. Joseph’s Regional Medical Center February 19th, 2008. She was 5 months old. Zoe spent 3 weeks in the hospital. She first had an MRI and then an EEG completed. Both tests were normal. Next, she underwent a moderated barium swallow. This test revealed she was indeed having a very difficult time swallowing. Zoe next underwent an upper endoscopy and had a PH probe placed in her esophagus. Both of these tests were to screen for reflux. Both tests came back normal. No reflux… At this time, I new in my heart it was serious. Zoe had a team of neurologists working on her, a GI specialist and a Geneticist, yet no one could offer any answers as to what was wrong with our little girl. By the end of the third week in the hospital, Zoe was crying every waking moment. She was only sleeping about 45 minutes at a time and she was now fed by an NG tube. The doctor’s were now awaiting the results of Zoe’s blood work and therefore sent us home to wait. Two days later, Zoe began vomiting every time she ate, so we returned to St. Joe’s.On March 8, 2008 the attending Doctor entered Zoe’s room and advised us Zoe had been diagnosed with Krabbe Disease. The geneticist came in and explained the disease in detail. Our world came crashing down around us. Our beautiful, precious baby girl was not expected to live past the age of 2 years. Never has my heart been heavier.At the time Zoe was diagnosed, she was well into stage 2 of the disease and she, therefore was not a candidate for transplant. Our only option now was to try and make our little girl as comfortable as possible.Zoe faught a long, tough battle with Krabbes Disease. She was brave and she was strong. Krabbes Disease took her sight, it took her laugh, it took her smile and on January 26th, 2009 at 12:08am it took her life.We cherish every moment we had with our daughter. I am thankful every day that God chose me to be her mother.Fly high and play hard sweet angel.....
Wednesday, August 26, 2009
Under Construction..
This page is currently under construction. I am in the process of organizing and moving all of my caring bridge journal entries to this new spot. Please bare with me.
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