Letter from Brenda
Alaina’s Story
My daughter Alaina Rose was born August 20, 2001. Sometime during labor Alaina suffered a stroke. She was hospitalized for the first six days of her life. She was sent home with no medications, we were told to look out for all of the obvious signs of concerns. But, advised to treat her like any normal newborn and enjoy our new baby. My husband and I were excited but scared to start our life with our little girl.
Alaina was growing up and doing everything an infant should do. Her physician kept telling us how lucky we were that Alaina was as healthy as she is and we were so relieved when she turned two years old and she was a normal toddler with a no trace of the stroke she had at birth.
Six months later we had our son Jacob. Alaina was so excited to have her little brother a real baby she can play with. She was my little helper and we couldn't be happier with our little family. Little did I know that our lives would change, and the quite calm lives that we were loving so much was going to turn into hectic, and scary for the next 5+ years.
Four weeks after Jacob was born I put Alaina down for her afternoon nap. While She napped I cleaned the house and got ready for my husband to come home. After about three hours of her sleeping I went in to check on her and noticed that her eyes where rolled in the back of her head, she was pale and foaming and the mouth. I knew right away what was happening to my little girl. I immediately called 911 where they rushed my unconscious baby girl to the ER.
At the hospital she remained unconscious for another nine hours. During that time she was sent for MRI and CAT scans. She was hooked up to the EEG machine and the nurses came in every hour to draw blood from her. She laid there sleeping. My husband and I were left alone in her room with her, not knowing what was to happen to our little princess.
We spent three days in the hospital were the doctors figured out that Alaina had a seizure due to the scar tissue on her brain from the stroke. We are not sure what triggered the seizure. She was put on Tegratol and we were advised to set up an appointment with a neurologist. We took Alana home, scared and feeling helpless we did not know what to do. I spent nights sleeping on her bedroom floor and staring at her wondering when she was going to have her next seizure.
Five years later she has had twenty-five seizures that always happen when she is sleeping. We have spent countless times crying and scared to death not knowing what to do next. Alaina would always come out of the seizures with a smile and wondering what was wrong with us. Sometimes she would show weakness on the side that she had the seizure. Her face would droop and sometimes her speech would be slurred. She has had seizures that lasted a few minutes to almost twenty minutes. Now that Jacob is old enough he is bringing to want to help his older sister out whenever she has a seizure. It makes my heart hurt to see the fear in his eyes when she cannot respond to him. But both of my children show such strength during and after that I am amazed at how strong they are.
Alaina is seven years old now. She is in second grade and is trying her best in school. She has some learning disabilities that include speech. Alaina is now on the medication Keppra and we have our fingers crossed that it will help control the seizures.
Throughout all of the medication changes, doctor appointments, blood draws and of course seizures Alaina has showed me how precious life is. I would not change her for the world. We are learning how to live with this disease, it's not easy but Alaina is worth it. Knowing seven years ago that this is what my family would be like I would take it in a heartbeat. I cannot live without my children and Alaina is a star in my eyes. She came into this world fighting and she still is. Epilepsy is just a bump that has made my family stronger and more appreciative of each other. If it wasn't for Alaina and for this awful thing called Epilepsy how would my family be? I don't know but I am not looking in the past I am looking forward and hoping that the future holds a cure for Epilepsy. Until then I will take care of Alaina and do my best to keep her seizure free and growing into a beautiful young lady.
I hope that my story will help others who are dealing with Epilepsy. I know that when my husband and I were going through hell, we needed someone to say everything will be ok. There is always a positive side to every bad situation.
Brenda
