Katy was diagnosed with cortical dysplasia at 13 months of age. We were told that seizures were common with this disorder, but nothing else was ever done. At 18 months, she had her first (grand mal) seizure. At that moment, the life we knew would be changed forever.
Our first medication was Tegretol. We thought it worked as we saw no seizures, but every time we had an EEG the dose was increased. After two tumbles down the steps and some stitches, our pediatrician confirmed that we were facing a neurological problem. Our hearts were ripped out again.
After many, many, many failed medications, in May 2000 we tried Vagus Nerve Stimulation (VNS), with little help. Our neurologist referred us to Cleveland Clinic to be tested for surgery. We reluctantly agreed, but had nothing else to try. Katy was then 8 years old, and having over 150 seizures a day.
We left Cleveland, after a week of testing, with mixed results. The doctors were not very optimistic on surgery. Only treatment would be the Ketogenic Diet. All that was left was to wait and see if she was eligible for surgery. After a few agonizing weeks and several phone calls, we received recommendation for right functional hemispherectomy.
Katy's surgery was on November 7, 2002 at Cleveland Clinic. After a few weeks in the hospital (seizure free!), she was home by Christmas.
4 years later, Katy remains seizure free. We weaned off 3 of the 4 medications, reduced the dose by 50% on the last remaining anticonvulsant and are now in the process of weaning the rest. The VNS (turned off two years ago) was recently removed. Our trip to Cleveland in November 2006 was bitter-sweet: we received Katy's release from treatment, as she doesn't need ongoing pediatric epilepsy services any more. It's been at times a grueling road to travel but with the support and care received at the Clinic, and with God's control, it has been well worth it: we have our daughter today!
She exceeds all expectations and is truly a miracle that God gave us our daughter back. She is in 3rd grade, a very active little girl, and doing great! She attends school and is being mainstreamed in regular classes. She continues to receive physical, speech and occupational therapies, but we strive to keep life as normal as possible for Katy. It is truly amazing to see her every day with her big smile and being able to complete routine daily activities with no problems.
We traveled down a long, lonely road, often leaving us depressed and asking why. Life was tough, yet every night when we tucked Katy into bed, she knew that she was loved by her mom and dad. Now, she tells us, that she loves us too! We used to go to bed every night completely exhausted. Today, when I lay my head on the pillow and wake up the next day to see that smile, well...it is just worth it! It was hard to let go, but we wouldn't have done it any other way.
Thank you for reading our story. We hope you can find answers to help you in your journey, and the comfort you need to make it through another day.
Katy's mom and dad