**UPDATE (Jan. 2017)
Amaya started having seizures again a few weeks ago. She had been seizure free for 6 1/2 months after her right functional hemispherectomy (parts of right side of her brain were removed and the remainder disconnected.) This was like a hard kick in the gut to us! We will be traveling back to Cleveland Ohio for Amaya to undergo testing and we have another surgery planned for January 18th. This time she will have all brain tissues removed from the right side. This procedure has a higher risk of Amaya developing hydrocephalus and needing a shunt for the rest of her life. She will also once again need to come back and have several weeks of intense physical and occupational therapy. I will be out of work for about 8 weeks with her as long as surgery and recovery go smoothly. Please keep our family in your prayers.
I am starting this page for my youngest daughter Amaya. Our lives changed forever in July of 2014 when Amaya was diagnosed with Epilepsy at 9 weeks old. She is now 17 months old and suffers from multiple seizures everyday.
￼This picture is after Amays's first MRI when she was only 9 weeks old. Amaya was started on medication for her seizures and we had no idea the long and tough journey that would be ahead of us. Amaya is now on her 5th medication in a little over a year and none have been able to control her seizures. She has been admitted to the hospital multiple times due to complications from either her seizures or her medications.
￼This is Amaya and her amazing BIG sister from one of her overnight EEG studies. She has had over 10 EEG's during the past year because her seizures have worsened over the year.
￼Amaya has been through multiple genetic studies in attempt to find the cause of her seizures however we have not found what is causing them. We recently received a call from our Neurologist after her most recent EEG test in which we were told that her seizures from that night were of her whole right side of her brain and she wanted us to go to Cleveland, Ohio for Amaya to be evaluated for surgery. She explained that she believes that Amaya will never be seizure free on medication and this is our only option at her being able to live a seizure free life, which brings us to the present. I am a nurse at our local childrens hospital and our family has had an overwhelming amount of support in the past year. We have raised money in the past for Amaya due to previous hospital stays. We are now looking for support again as we make the journey to Cleveland. We will be in Cleveland for a week as of right now for Amaya to undergo testing for her to be evaluated for brain surgery. If she is a candidate for surgery then we will make another trip out to Ohio after the new year for her to have the surgery performed. We will be using any money raised to cover travel expenses, time missed from work, and medical expenses for Amaya. This is a very scary time in our lives and has been a very big emotional/financial burden. As a parent you never imagine a time that you would "wish" your child can have brain surgery but we want Amaya to have the best chance at being seizure free as we can. Words can not begin to describe the appreciation we have for our family and friends who have been on this journey with us, as well as the others who have donated time and money to help us in the past. Thank You!!!!