I had a textbook pregnancy. Every doctor’s visit was simple and the pregnancy went by with a breeze. On January 15, 2008 our precious Luke was born. Life was perfect. Life was simple. My husband and I took everything for granted it seemed.
Six weeks later our lives were turned upside down. We were out of state for my brother’s wedding with my parents in Florida. When Luke had his first seizure we didn’t know what it was. He was behaving oddly and it alarmed us. I worked for a pediatrician and immediately called her. Sadly, what I described sounded like a classic seizure to her..
The next 18 hours were filled with panic, disbelief, and uncertainty. Luke continued to have more than 10 seizures in 12 hours. We ended up twice at a nearby hospital ER only to be told by the doctors that Luke suffered from “colic” and it was implied that I didn’t know what I was talking about since I was a young, first time mom. He was put through horrifying spinal taps, blood draws and a myriad of other random tests that came back negative.
Finally, Luke’s seizures began to worsen and become longer. The pediatrician I worked for advised us to do something that was so hard for us to do. She told us that we needed to catch one of his seizures on video with my camera and show a doctor since not one person believed what I was describing. We finally caught a seizure on video and it was awful. We immediately made the decision to drive an hour one way to a larger city where we knew no one in the hopes that someone would help our baby.
There in the ER Luke began to seize right in front of the ER staff. Yet, no one helped us even though it was apparent we didn’t know what to do. Finally, after it became clear we were drawing attention, we were rushed straight back into a tiny childrens ER area, bypassing all the formalities and paperwork.
They sedated him with Phenobarbital and performed EEGs, MRIs and more blood work. We ended up staying 3 days in the hospital at Sacred Heart Hospital and after 3 days of seizure control we were able to take our tiny 6 week old bundle back home. We were scared to say the least.. For months we lived in constant fear.
Since then, Luke has faced many health problems and has yet to go a single month without a doctor’s visit in his 21 months of life. He is currently on Phenobarbital, Keppra, and Tripeltal, as well as many other daily medicines and has been seizure free since the end of September 2009. He’s suffered many set backs and delays and attends many different therapies.
But, there is not another child in the world that has a sweeter disposition than my Luke. It’s apparent to anyone that meets him that he is surrounded by love because Luke reflects what he sees. He gives kisses and love freely and loves to flash his captivating smile. Luke adores playing in water and sliding down slides at the park. However, Luke’s favorite thing to do is play in the car behind the wheel and make sounds that the car makes. If it has wheels, Luke will love it.
Luke is such a blessing to us. We’ve been through countless trials and tribulations and have spent many hours crying and worrying ourselves sick but together as a family and we are stronger because of that. We know God only gives you what you can handle and we feel so blessed by God to know that He believes we are strong. We have a wonderful support system in our family, friends, and church that love us and pray for us and we know that we could not have gotten through those times without them and our trust in God.
For thirteen months we had complete seizure control and Dr. Sharp at Arkansas Children’s Hospital convinced us it was time to wean Luke off Phenobarbital. The seizures came back with a vengeance and we were floored. We began adding more AEDs until we found the right levels and combinations.
This was when we realized epilepsy was going to play a bigger part in Luke’s life than we wanted it to and I, along with my family, began to search for something or someone out there in our situation. We needed to find people like us, who really did understand, because no one ever really does understand unless they’ve been there too. In the short time we’ve known about P..E.A.C.E. we have just fallen in love with what the foundation stands for and are so thankful that Arkansas has this resource.