My daughter Lily was born in 1998 while my husband was stationed with the Navy in Yokosuka Japan.She was healthy and her first year was full of so many milestones. Everything was fine until she reached 15 months and our world came crashing down.
A few days after Christmas in 1999, Lily got an ear infection. We did the standard treatment, antibiotics for a week, but 7 days later she still wasn’t herself. We took her to the ER, but were sent home because there was no trace of a lingering infection. The next day Lily fell asleep and slept for 24 hours. The medical staff at our base told me not to worry, that she was probably just exhausted from being sick.
The next night, Lily woke up and started seizing. We went straight to the ER and when we arrived they rushed her in, talking about Epilepsy and Phenobarbital. She was uncontrollably twitching on her side, and for days her seizures continued.
After four days at Yokosuka Naval Hospital, a lower level hospital without as many resources as a larger hospital, we realized things were more serious than they could support there. The decision was made to fly us out on an emergency medical plane to Tripler Army Medical Center in Hawaii. Once there my little girl had to be put into a drug induced coma to stop the constant seizures and let her brain rest.
After spending over a week there, the doctors in Hawaii told us that Lily would need brain surgery, an operation that they didn’t have the resources for. Yet again we were on the move, this time landing at The Children’s Hospital of Los Angeles. Once there we found out that Lily’s seizures were coming from all over her brain and a surgery wouldn’t be helpful. We stayed in LA with Lily for three months, my husband and I constantly at her bedside as her seizures slowly became controlled.
Lily's diagnosis is Presumed Viral Encephalitis. She also has a seizure disorder, developmental delay, and Cerebral Palsy all secondary to her initial illness. Being a military family, moving to new places on a regular basis is a typical part of our lives. After spending months away from the Navy to be there for Lily, my husband finally had to return to duty. Together we traveled to Virginia, where my husband was now stationed and Lily could continue to recover at Portsmouth Naval Medical Center. Lily spent a month there before being transferred to The Children's Hospital of the King's Daughters for rehabilitation. After Lily’s initial hospitalizations, she went into Early Intervention and outpatient therapies in Virginia Beach, VA.
After spending five months in Virginia, we moved back home to New Jersey. That’s when we found Children’s Specialized Hospital in Toms River and started Lily in therapy right away. She was put into the day hospital program and then moved to outpatient therapy.
After a few more moves and putting Lily into numerous programs across several states and in Canada, I finally decided we needed to settle down for our children’s sake. My husband and I moved to Egg Harbor Township New Jersey, this time for good. We enrolled Lily in a special school close by, and were finally feeling comfortable.
It was so exciting when we found out that Children’s Specialized Hospital was opening an outpatient location in Egg Harbor Township right after our move! Through all of our travels, we never found therapists like those at Children’s Specialized. Their therapists really enjoy what they are doing and are good at it.
Lily is now seventeen years old, and is non-verbal, non-ambulatory. Her seizure disorder has left her having seizures nearly every day. She has recently been trying to use a Tobii for communication, which is a work in progress. Throughout all of our travels, the many different medical stops along the way, we are so happy to have found Children’s Specialized. As a parent, you want the best for your child, and the therapists at Children’s are truly working to help Lily reach her full potential.