Lily Sophia Rossignol was born on May 5, 2007 at 12:05 am. She was a tiny 5 pound 4 ounce beauty. Four hours after she was born, a nurse came into our room and said: "She is very small, she has a lot of hair, and she has quite an "attitude". That attitude has been the driving force for her success in the face of such overwhelming adversity.
At around three months, I started to notice that Lily's eyes would roll back in her head, to the left, 20 times in a row, shortly after she would wake up. The first time I saw it, something in my stomach told me that something was wrong. It took me switching pediatricians, a ton of online research, and diligent video taping of each episode until finally, in September, Lily was referred to a Pediatric Neurologist. The only problem was that they couldn't see here until December 12th.
I called every morning for 6 weeks until November 3, 2007. Lily had a big seizure, the biggest I had seen so I decided it was time to go and fight for answers. I took her to the emergency room and she was immediately rushed into the CT scan. The scan showed a large lesion on the right side of her brain. She was admitted and over the next couple of hours she received an MRI and two EEG's.
We were told that Lily had a stroke at some point during the pregnancy that had damaged 2/3 of the right side of the brain. Lily was diagnosed with Infantile Spasms and Complex-Partial Epilepsy. We were wondering how she was ever going to be okay.
Between November 2007-March 2008, Lily failed Trileptal, Phenobarbital, ACTH, Vigabitrin, B6, Topomax, Clonopin, and Lamectil. The only drug that seems to have done anything positive was Keppra which has yielded a little relief from the partial seizures. She was not advancing developmentally and was beginning to lose the ability to feed. Our hears broke, as each day, we watched every last shred of Lily slipping away.
We arrived at the Cleveland Clinic in Cleveland, Ohio on March 25, 2008, praying for help.
After 3 days in the Epilepsy Monitoring Unit, it was determined that Lily was in a dire condition. She never had time of not being in a seizure. The doctors informed us that Lily was having 350+ seizures every 24 hours.
She was upgraded again from Intractable Epilepsy and Infantile Spasms to Catastrophic Epilepsy and Infantile Spasms. We were assured that drastic measures were necessary or Lily would only make it a few more months, at most.
On April 3, 2008, 10 month old Lily endured a 4 hour surgery called a functional Right Hemispherectomy in which doctors disconnected the remaining brain tissue in the right half of Lily’s brain but left some tissue in place to reduce the risk of hydrocephalus. She did well but when she awoke she was still clearly seizing. On April 14, 2008 Lily had a second surgery to convert her to an anatomic hemispherectomy in which doctors completely removed the remaining tissue of the right hemisphere and found a 1 centimeter piece still attached to the underside that was generating 150+ seizures per day. This surgery lasted 1 ½ hours.
The surgery was nothing short of a miracle. Lily’s language skills became instantly age appropriate. She began to look us in the eyes-there were no seizures. As of April 14, 2008 Lily has been completely seizure free. As of April 14, 2009 she has also been drug free.
Lily is approaching her 3 year birthday. Her progress is slow but new skills emerge each day. She attends a preschool for blind and visually impaired children four days a week. All of her teachers and practitioners look forward to working with her each day and are dazzled by her progress. She has taught an entire community that anything is possible in this life and it is a sweet and good life.
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