Amelia Ashley

Our love came into our lives in January 2006. Amelia was a healthy 7lb 1oz baby girl and was instantly the love of my life. My pregnancy was great until I had an ultrasound 4 months into pregnancy where they had found choroid plexus cysts, 3 of them. The doctor brought us to his office after the ultrasound and gave us information that turned our lives upside down. The doctor basically told us that there was a chance that our child could be born with a syndrome called Trisome 18 or T18 which is a devastating diagnosis because if the child survives the pregnancy most don't survive long after birth, or these cyst could get smaller which would be an indiction that you child will be fine. After swallowing this incredible information he followed by saying, we usually don't terminate this late in pregnancy but we make exceptions. I though my husband was going to jump across the doctors desk and punch him. Terminating was not an option. We will love this child not matter what. That is what being a parent is all about.
Our beautiful daughter came into our lives the 6th of January and was perfect. She was alert, ate like a horse, and the doctors could not see that anything was different about our little girl. Amelia seemed to develop on target. When Amelia was 3 months old we noticed Amelia doing this strange movement almost like a crunch. These movement started out slight and spuratic but gradually got worse. I expressed my concerns to her pediatrician but he thought it was just gas, gas? I video taped these episodes and brought them in to show him. Before I knew it we were on our way to the hospital. Amelia was hooked up to a 24 hour EEG, and received an MRI. We were given the diagnosis of Aicardi's syndrome on April 12th, 2006. The head pediatrician wanted to transfer us to CHOP, where they are more familiar with such a diagnosis.
We arrived at CHOP and were told that after the doctors went over the EEG result and the MRI that they agreed Amelia Has Aicardi's syndrome. They expressed that Amelia's development was great thus far but they had to get these infantile spasms under control. Amelia was released from the hospital being prescribed Topamax sprinkle capsules which we were to increase gradually until she was on 15mg in the am and 15 mg in the pm. The medication worked faster than the doctor had anticipated. After being on the full dose for about 2 weeks Amelia's seizures stopped. It was amazing. Amelia was growing and eating and ready to start Early Intervention.
She started Early Intervention in June, with OT twice a week, and PT one a week. It was awesome to see her improvement in such a short period of time. Amelia had a left sided weakness that was being helped with this therapy. We eventually took on speech once a week and DI twice a week instead of OT. I was so impressed with the Early intervention team. It truly is an amazing service that is available for us.
During Amelia's growth spurts we did find a need to increase her Topamax in total she was up to 15mg in the am and 30 mg in the pm and was seizure free for about 1 year and having 3 EEG that were "normal" before we discussed weening her from her Topamax. During this time we also saw a neuro- opthomologist about Amelia's eyes. Amelia has 6 lesions in her right retina and 2 in her left but somehow they did not effect her optic nerve so Amelia's vision was not affected. Amazing!!
Right now Amelia is doing very well. She has been off meds for almost 2 years and has been seizure free. She is currently attending preschool in the inclusion class and loves it. She receives speech therapy, PT, and OT. Amelia started walking the day after her 2nd birthday but was off running in no time. Her speech is a little delayed but she is making strides everyday. Amelia loves to read, color, and play with cars. Our little girl amazes us everyday. We are so lucky to have her in our lives. I can't wait to see what the future bring for Amelia and our family.
Amelia's neurologist did express to us that Amelia is on the extremely mild spectrum of Aicardi's syndrome. They can't tell us what tomorrow will bring. Our only hope for Amelia is that she is happy and her life is filled with love.