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JenniferWe are a military family. In 12 years, we’ve moved 7 times. We’ve lived in 4 states, and 2 foreign countries. We’ve met Ambassadors and lived through hurricanes. It’s what we do. We are a military family, we are prepared for anything. Well, almost anything. On January 3, 2004 we had been in our new house in Croatia, for just about 3 months. We arrived in Croatia in October and had a whirlwind of activity that had just finished with a holiday party a few nights before. We had barely any time to completely unpack, and still had boxes sitting in our living room. After dinner that night I had looked at Rich and said, “When Liz goes back to school, I’ll really work on getting the house set up.” And I took Jennifer up for a bath. The hospital was something out of the cold war. In the Emergency Room only one person spoke English, and only one word … STROKE. It was just too much to comprehend. We finally were sent up to the Neurology ward, where the Doctor spoke English. And they did all the tests. Seizure. I didn’t know it at the time but my husband was on the phone with someone in Germany, trying to get an American Medical Evac team to us. Jennifer and I were taken to the American Hospital in Landstuhl, the very next morning. The neurologist there told us: “It was a fluke; you must’ve had the bath water too warm.” There are too many people to thank, because while all of this was going on, many of the Embassy families stepped in and fed my husband and took care of Elizabeth. Made sure she got to school, did her homework, brushed her teeth, and was distracted from all that was going on with her sister. After a stop off at Walter Reid Army Medical Center in Washington D.C., it was determined that Jennifer could not go back to Europe. On to Chicago, to stay with my parents. Thank God for family. They got Elizabeth set up at the local Catholic school, signed up for a park sports program, and had her going here and there with cousins, and aunties, and STAYING BUSY. Shortly after getting settled, my sister was over visiting and Jennifer stopped breathing. The Chicago FD EMTs arrived within minutes, had her on oxygen, and she began seizing. More than 20 minutes. A stop at the closest ER to stabilize, and then on to Children’s Memorial. We did that a number of times over the next few months. We got to know the nurses in the Neurology ward very well. And then her seizures changed. Small “twitches.” We didn’t know how to explain it. In to the hospital on a Sunday for a Video EEG, over night. Daddy returned from Croatia, to see his little girl back in the hospital, head wrapped like a mummy with wires sticking out everywhere. A week later we sit in the Epileptologist’s office and hear the words “Severe Myoclonic Epilepsy of Infancy, also known as Dravet’s Syndrome.” The only other things I remember from that meeting were, “at age 2, severe regression” AND “may not live to see her 5th birthday.” We went home and cried and prayed and hugged and cried some more. And then one morning I sat up and said, “NO. No way. Not my child.” We bought her all the right toys, and were diligent with meds, and read all the books they told us to. True to military form, we couldn’t stay in Chicago forever. My husband’s career couldn’t stay on hold. He had orders to Camp LeJeune, and we started making calls. Exceptional Family Members Program was our first call. The EFMP Rep said, “No, there are no Pediatric Neurologists in the area.” And so the phone calls began to change orders. California or Virginia. Virginia was a teaching job for him, and since the war was going on, we decided this was the better choice, for now. And then we researched the Neurologists in the area. And our trusted Epileptologist told us that the one in the Navy was a really great doctor. I didn’t know it until a few years later, but my husband had walked Jennifer’s medical file into his office and said, “We need to see you.” Somehow they squeezed us in, although he wasn’t supposed to be taking on any new patients. In December of 2005, we opted to have a Vagal Nerve Stimulator (VNS) implanted in Jennifer. We had big hopes of stopping seizure activity. And, although we see a decrease in myoclonic seizures, and a shortened postictal time, it wasn’t a miracle cure. But, we wouldn’t change our decision even if we could. In 2006 we had her blood drawn and sent to a lab to confirm what we already knew. Dravet’s, due to a gene mutation in SCN1A. Rich and my blood showed no sign. Jennifer is going to be 5, on July 4th, 2008. And although over the last 4 years, we’ve determined that some of those first prognoses were “the worst case possible.” It always sticks in the back of the Momma’s head, and we will breathe a BIG sigh of relief, the day after her 5th birthday. She has delays. Development and speech but … she’s still learning. She knows colors, and lots of songs and she’s starting to draw recognizable faces (even if they have 5 eyes, and 3 noses!) She’s a happy girl and loves her big sister. When her Daddy walks through the door after being gone for a week or even just the day, it’s screeches of delight and huge hugs and kisses. We’ve had huge ups and huge downs. We’ve gotten through them all with the help of great EMTs, the local hospital here in Virginia, and our Navy medical team at Portsmouth Naval Medical Center. She attends a phenomenal school for special needs preschoolers, here in Newport News, VA. And many supportive neighbors, friends and family have prayed and held us upright on the most difficult of days. Do we pray for a miracle every single day? You bet.
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Epilepsy is more common than Parkinson’s disease, multiple sclerosis, cerebral palsy and cystic fibrosis combined! Dr. Roy Sucholeiki, MD |