Our first child Allie was born in 2003. It was a happy text book pregnancy. A perfect birth story and her milestones right on track. She had her vaccines. The first questionable behavior was after her 9 month vaccine the following week she rocked back on her high chair and broke it. I specifically remember asking the pediatrician about that, her response was, “she is advanced”. At that time, I did not question doctors. At 16 months old, our fast moving toddler was running around the kitchen center island. She slipped back and hit her head. We all heard this and thought, “wow, that really must have hurt”. That night we rushed her to the hospital after we saw a seizure. The entire night she was seizing every hour on the hour like clock work. We took a helicopter ride to Children’s Hospital in Minneapolis. The MRI, CT scans did not warrant for a TBI diagnosis. The doctor said, there was no evidence that she hit her head. The doctor also said, “she must have had seizure tendencies, and maybe the hit triggered them.” A week at the hospital and a lot of phenobarbital we were sent home giving her medications every day to stop seizures. I remember thinking, give me a broken bone! That will heal! The brain is so complex there are no answers –ever!
This is painful to relive.
Shortly after we got home from the hospital, I was reading a brochure about epilepsy. I remember clearly, this will be with us forever. It was weird seeing that word in print. I guess that is when it set in.
Age 5 she was diagnosed with Asperger’s. This was a conflicted diagnosis because her personality was masked by heavy doses of Depakote, Keppra, guanfacine ect. but she was a social butterfly too. The diagnosis of autism actually helped her with more school services. Even though we did not want to “label” her, it has helped her not get into trouble with school and actually protect her. Allie amazes all of us. She has always been on these horrible medications but through it all she has a wonderful personality. She loves to climb trees, swim, jumprope, downhill ski, ice skate, play soccer all with a caring spirit.
August 11, 2013 changed our lives. Dr. Sanjay Gupta reported on a sweet little girl, Charlotte Figi. I summond my husband to quick come and watch. We watched the documentary on You Tube over and over the following days. We shared it with friends and family. I have cried so many times for the Figi family. My husband and I knew what we had to do.
Fast forward to current day, 2014. Allie is now 10 years old. She is exhausted from having breakthrough seizures. Failed over a dozen pharmaceuticals. We made an exciting decision to obtain a better life for our Allie! We sold our house in Minnesota, left our deep roots with family and friends and moved to Colorado to try medical marijuana. We are on the waiting list for Charolett’s Web. We love the beautiful state of Colorado. We love the new friends we are making too. Happy to be here.