Caleb's Story

Caleb was born strong and healthy on June 14, 2002. On Tuesday May 31, 2005 we received a phone call from Caleb’s preschool telling us that he had a high fever (102) and was listless and we should come and get him. When we got him home we phoned his Pediatrician and they advised us it was probably a virus and if he still had a fever in 3 days to call them back for an appointment. Caleb’s fevers were up and down for the next 3 days.

On Friday, June 3, 2005, at 3:30a.m. his fever spiked to 103.9. We put him in the tub and finally got it down. When the Pediatricians office opened we called for an appointment. By the time we got to the appointment Caleb had no fever and was in good spirits. Playing with the nurses and getting stickers. They checked his ears, throat, etc. and said again it was probably just a virus and sent us on our way. On Saturday, June 4, 2005, Caleb played outside and took 2 naps instead of one and was a little fussy but we assumed it was from being sick all week. Dave laid down next to Caleb’s bed Saturday night and fell asleep there. On Sunday, June 5, 2005 at 5:45a.m. Dave woke up to Caleb making a faint noise and found him face down in his bed. He had soiled himself, his eyes were stuck wide open, but he was not responding. He was grey and barely breathing. His bed was covered in saliva. His body was limp. We were clueless as to what was happening and thought we had already lost him when we called 911. Living in rural WV it took paramedics 20 minutes to get to us. 20 minutes of HELL for us! When the paramedics arrived they scooped Caleb from the living room floor and rushed him to the ambulance and started CPR/Oxygen and away we went. Little did we know that our family and our lives, especially Caleb’s, would be changed forever. When we arrived at the hospital they explained Caleb had a seizure. He had no history of seizures. They did a CT scan of his head and were going to admit us so they could observe him but when trying to check in to a regular room he started to have another seizure in my arms. The nurse rushed us back to the ER where he had a grand mal on the table. They decided they were not equipped to care for Caleb and requested a medivac to Fairfax INOVA Hospital for Children. Over the next month Caleb continued to have seizures, as many as 50 grand mal a day. He lost his ability to walk, talk, feed himself, etc. He also had spells of anger. The Dr.’s advised us they thought he had Viral Encephalitis. We had never heard of it. After 4 MRI’s, 3 spinal taps, numerous EEG’s, a ton of blood work, and a transfer for 3 days to Children’s National Medical Center in Washington, D.C. we learned that Caleb had a small area of damage to his right hippocampus. No one could tell us what the future held. They told us it could take up to a year for the brain to heal and we’d just have to wait and see. They discharged him after 24 hours with no seizures, July 2, 2005. We felt so helpless. They told us to keep a helmet on him so he wouldn’t fall and hurt himself. We had to start teaching him everything all over again. When we got him home I will never forget him leading me to the coffee table and he leaned down and kissed it. He was so happy to be home. We immediately started making doctor appointments. He had physical and occupational therapy a couple times a week and we had to drive over an hour each way for that. I returned to work and Dave became Caleb’s full time caretaker and teacher.

AS a result of Caleb’s Viral Encephalitis (virus unknown) he has Epilepsy and still has frequent uncontrolled seizures. He has partial seizures that sometimes spread to generalized seizures. The Dr.’s call them intractable or hard to control. He currently takes 3 different anticonvulsants. During a recent hospital stay we learned that Caleb’s seizures are coming from both sides of his brain, so he is not a candidate for brain surgery. He has tried many medications and combinations. In addition to Epilepsy, Caleb also has sensory processing issues, learning difficulties, migraines, ADHD, and he tires very easily (low stamina). We continue to search for Caleb (hence the name of this website). We hope to raise awareness of Encephalitis and Epilepsy. We hope to find Caleb seizure control and help in the fight to find a cure for Epilepsy! We pray for complete and total healing. I can't describe how it feels to watch your child suffer and not be able to fix it. It is heartbreaking. Dave and I would glady take Caleb's place. Our Faith in God, our family, and friends are what keeps us going. Caleb is a true inspiration to us and all those he meets! He reminds us daily of the blessings we have! Despite his struggles he is a real trooper. He smiles a lot, gives lots of hugs, and never fails to say his prayers!

Caleb has an older brother, Austin. Austin is 11 years old and is amazing! He loves Caleb very much and is very protective of him! He is the most unselfish 11 year old I know. He has become very good at recognizing Caleb's seizures and calling 911 when needed! We are blessed to have him too!

Tracie

Please Take a Moment and Visit Our Friends