Avery’s journey with GRU began May 17th 2006, the day she was born. Her right eye did not develop completely, and had a condition called fetal vasculature. She had her first surgery when she was 6 weeks old to remove a cataract and relieve her of painful glaucoma. She had regular checkups and was doing great until May 15th 2 days before Avery’s 1st birthday. She woke up vomiting. We took her to the doctor after 24 hours of not keeping anything down. They sent us home thinking that she would get over it and as long as she was wetting her diaper she would be fine. A couple hours later David tried to arouse her, He finely got her eyes to open and they were fixed and dilated to the right. We rushed her to the hospital. While getting her vitals she began to have rhythmic movement on the left side. We were moved straight to the floor where they drew labs, and gave her Seizure rescue meds, nothing was stopping the seizures. A CT scan showed that her brain was on the tonsiler space, any more swelling she would be brain dead. A Spinal tap was scratched off the list since this would cause her brain to immediately herniate. The blood work came back and her glucose was 5 (norm 70 – 150). 5 Is not compatible with life and organs begin shutting down. Other labs were way off as well. She was admitted to the ICU and placed in a coma to let her brain rest. The doctor told us to prepare ourselves she probably would not make it through the night. The next day was her first birthday; I thought “she had to make it to her first birthday.” We cried and prayed and tried to breathe. Two prayers I remember were “take my little girl before she feels pain, I will suffer here on earth without her as long as she does not.” The other was “Please allow this trial to bring someone to you Lord.” Two weeks in the ICU consisted of surgeries, MRI’s, multiple doctors and tests. Avery was discharged with an unknown cause of her seizures; However Dr. Park had suggested that she may have Rasmussen encephalitis.
June was spent watching our baby have multiple seizures every day. We held our breathe every time she would fall over and wait for her to come out of the seizure. The first Friday of July she had a follow up MRI. That Sunday Dr. Park called and asked us to come in the next day for an EEG and discuss our options. Two weeks later a brain biopsy was preformed to confirm Avery had Rasmussen encephalitis. We researched this possibility and knew the only way to give her a life without constant seizures; seizures that were killing the right side of her brain, making it so she could not learn to walk, or talk, or do anything a 1 year old should do; we were going to do something drastic. We agreed to remove the right side of her brain. Yes you read correctly, the whole right side of her brain.
We truly had no idea what kind of future this would give us, more importantly what kind of future our little girl would have. However we knew that a future with 6 or more seizures every hour every day would not give her much of a life. September 6, 2007 came and we handed over or 16 month old baby girl to the operative team at Children’s Hospital of Georgia and trusted that they would give her a chance at a life. They delivered!!!
Avery is now 7 years old, she has not had a seizure since September 6, 2007 the day of Surgery. She is in second grade now and succeeding at everything. She took ballet the past two years, played soccer one season, was a daisy in the girl scouts, and attends occupational and Physical therapy every week. She is typical 7 year old girl, AMAZING!!!
We know that our miracle was given to us by God thru so many doctors, nurses, staff, therapist, at Children’s Hospital of Georgia. Even though we have moved away we will always be at home when we come to Children’s Hospital of Georgia.