How it all began
How it all began....
The year 1998 was a big one for me I was about to have my first baby and move to another country to have her. I must have been out of my mind. My husband is in the Navy and he was stationed on the USS Kitty Hawk which was about to do a home port change to Yokosuka Japan. I moved there around 5 to 6 months pregnant with Lily. She was born in a Military Hospital on base, September of 1998 happy and healthy. The first year was the best all we had was each other her daddy was out to sea a lot and we were the best of friends......
After Christmas 1999 Lily got an ear infection we did the standard 7 days of antibiotics. After those 7 days Lily still wasn't herself, so we took her to the ER on New Years Day 2000 thinking maybe her infection wasn't healed. There was no signs of any lingering ear infection so we were sent on our way. The next day Lily fell asleep around 5pm and I wasn't able to wake her and basically gave her a bath asleep. I woke up the next morning with a sick feeling thinking how strange she didn't wake me up like she usually does and it was almost 9am. I went in to wake her and she just didn't want to wake up. She was breathing and everything just not waking up. It was the weekend so I could only get the on call nurse at the clinic he told me to just keep waking her to take sips of juice or water to keep her hydrated and that she must just be wiped out from being sick. Around 5pm that evening a full 24 hours Lily woke up threw up and started seizing only I didn't not know what she was doing was seizing at the time. My friend Irene drove us to the main base, we didn't live on the base were the hospital was located. Her whole left side was twitching by the time we got there. They took her back right away and started talking about Epilepsy and Phenobarbital. And finally I said, "Is she having a seizure?" I just stood there frozen like I was in a dream because they were tearing her clothes off and sticking all of these needles in her and putting oxygen on her face. I didn't know what to do and all I remember is going to tell my friend Irene you need to find Lily's daddy she is having a seizure. I think back to that statement often A Seizure, she's had thousands and still has them almost everyday years later. Nothing was ever going to be the same....
Yokosuka Naval Hospital was a level one hospital so once we realized things were going down hill we all had to be flown out on an emergency medical plane. Little did we know we would never be returning to our home of almost 2 years in Japan. The decision to medi-evac out was made by the 4th day of her hospitalization there. Lily really needed a MRI and there was not one available at hospital we were at. Tripler Army Medical Center in Hawaii was were we went next. Once we got there she got an MRI they didn't find any damage but thought she needed surgery that required them to remove half of her brain. Things were touch and go at Tripler we were there about 10 days. I asked if she was going to die and the Pediatric Neurologist said yes she will if we cannot get her to stop seizing and get her brain to rest. She had to be put in a drug induced coma to stop the constant seizures. The surgery they thought she needed could not be done at that hospital so we were flown out once again to The Children's Hospital of Los Angeles. Lily was in this hospital the longest, over 3 months. When she got there they realized she did not need brain surgery and that her seizures were coming from all over her brain. She slowly came out of status (constant seizing) while there. To make a very long story a little shorter my husband had been TAD (Temporary Assigned Duty) to her bedside for over three months and we had to pick a new duty station for him to go to because he had to go back to work. Then Lily could begin her recovery we were then transported to Portsmouth Naval Medical Center in Virginia. On a commercial plane this time with a nurse. After about a month in that hospital we went to a rehab hospital called The Children's Hospital of the King's Daughters. From there we went home to try to pick up the pieces and begin a different way of life. Oh and I was about 8 months pregnant with her brother Lucas at that time. When Lily first got sick I was about 12 weeks pregnant with him.
Lily's diagnosis is Presumed Viral Encephalitis. She also has a seizure disorder, developmental delay, and Cerebral Palsy all secondary to her initial illness. There was never any medical evidence of Viral Encephalitis they came to this conclusion by how the illness came and left her body. During her hospitalization she had 7 spinal taps, 6 MRI's, 2 CAT scans, and an entire Encephalitis work up done. No damage found then and even in recent tests.
Lily is now ten years old, and is non-verbal, non-ambulatory, and is fed through a G-Tube. She can use her eyes and gazes to communicate somewhat. She can take steps with help but gets around by her wheelchair and something we call bunny hoping around on the floor. Being fed orally is a work in progress she can take a small amount of pureed food by mouth. Her Seizure Disorder has left her having seizures nearly everyday.
Through various therapies Lily has made a great deal of progress. She is able to walk with help and is interacting more appropriately in her environment
