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Voice of Faith

March 30, 2011

Jordan's Story

CORBIN — Click to view the Voice of Faith, March 2011 issue in its entirety.

By Shane Martin

What do you do when you think God doesn’t hear you? You listen harder! In 2000, our second

daughter, Jordan, was born. Along with her older sister, Courtney, it made our family a bit bigger, yet immediately closer. We didn’t know we were soon going to be hugely tested as a family and as Christians. As Jordan grew, we noticed she didn’t roll around, or “babble” like her older sister had at the same age, but we just filed away our concerns.  Not all babies develop at the same rate. It was probably nothing to worry about...

Late one night my wife arose from bed, turned on the light and said, “Shane, something’s wrong!” She insisted that Jordan “looked different.” After getting up to look, I told her not to jump to conclusions as Jordan seemed perfectly normal to me. However, over the next few days, Ann continued to watch Jordan more closely, and she noticed a slight twitch in her eyes. Nothing major, but it was there. To be on the safe side, we took Jordan to our family doctor. Of course, her eyes didn’t “twitch” for them, so no one seemed overly concerned.

Around eight months of age, Jordan’s “twitch” became worse, so we decided to video an episode. Even with the “twitching” on camera, the doctor was still unconcerned. Feeling something was truly wrong, we took Jordan to UK Medical Center in Lexington for further evaluation. Thus began the medical chaos that would send our world out of control, yet draw us closer as a family and closer to God.

We were sent to the Dept. of Neurology in the UK Children’s Hospital. The on-call doctor just happened to be a professor of neurology. We would finally be able to find out what was wrong with our daughter. Jordan was hospitalized while tests were performed to find out the cause of the “twitching.” After several days of hospital food, a small room with nowhere to sleep, driving back and forward to work, and the typical stress of just waiting, we finally got a diagnosis — Infantile Spasms.

All things considered, this didn’t sound too bad. She might even grow out of it. The doctors put her on anti-convulsive medication and we were on our way home. We thanked God for allowing us to know something, but unfortunately, there was more to come.

As Jordan grew, her fine motor skills didn’t. Therapy didn’t provide much improvement. Over time, we had gotten used to the twitching, but then it grew worse. We went back to the neurologist who performed an EEG to measure her brain waves, and got more bad news. Jordan was having over one hundred seizures per day! How is that even possible? Back to more testing and more hospital stays, and finally another diagnosis - Lennox Gastaut Syndrome. The doctors explained it as a form of Epilepsy that is very hard to control. We soon learned the doctors had described Jordan’s problem like a mild punch to the stomach when it was actually a Mike Tyson punch to the face. Lennox Gastaut Syndrome is an uncontrollable form of epilepsy that carries a reduced life expectancy as well.

 Jordan was already either taking, or had taken, every known seizure medication. Some of her dosages were at toxic levels. With a renewed urgency to help our daughter, we began to research all her options. Ann became a stay-at-home mom and nurse, so she could better care for Jordan. Our family would either be torn apart with the stress of all this, or it would be drawn closer together. Through God, we were able to accomplish the latter.

With Jordan still having continual seizures, we felt desperate.  The horror of watching your child suffer is beyond description.  As soon as the current seizure would stop, another seizure would begin, then another, and on, and on, and on. All we could do was pray.

With the medication not working, the doctors suggested brain surgery. The procedure would sever the right and left sides of Jordan’s brain in hopes of stopping the seizures that were slowly destroying her. You have got to be kidding me, right? Sensing our hesitancy to cut our daughter’s brain apart, the doctors mentioned a device called a vagal nerve stimulator.  It would go into her chest, like a pacemaker, and stimulate the vagal nerve, helping control some of the seizures.  Obviously, we wanted to try that option first.

It was so hard to let them take her away from us to perform the surgery. We felt so out of control. We found out later that she had begun status seizures during surgery and had to be resuscitated. Try to imagine finding out your child “died” while you were sitting out in the hallway waiting for her to be better. We chose to focus on the fact that she came through the procedure, and prayed the device would do its job.

Unfortunately, the stimulator never really did much to help the seizures. After about a year, I was frustrated and tired of the unknown, so I did more research while Ann continued to care for Jordan. I ran across an article from Johns Hopkins Hospital about a diet for seizure patients. After discussing it with a skeptical doctor, I wrote it off. Jordan would have to fast for two to three days. Did I mention the only thing that Jordan seemed to enjoy was food? Making her fast seemed too cruel.

Life continued unchanged for a while, but one night God seemed to speak to me as clear as day. I was reading in the ninth chapter of Mark. This chapter tells the story of a man who brought his son to the disciples with a dumb spirit, and said his son would foam at the mouth and fall in the fire. Another book actually says “epilepsy” and that caught my attention. The disciples couldn’t help the young man, but they took him to Jesus who healed him. After asking Jesus why they couldn’t heal the young man, Jesus said, “This kind can come forth by nothing, but by prayer and fasting.” Wow! Fasting! I believed God was telling me to try the diet! I prayed and asked God right then to help my fear and unbelief.  I felt led by God, so we started Jordan on the process right away.

We continued to research the Ketogenic diet. It actually began in the early 1900’s in conjunction with faith healing. When someone had epilepsy, the healer used the scripture from Mark, prayed, and had the epileptic fast for five days. Sure enough, the seizures would usually stop, but would start again when eating resumed. The medical community looked into the phenomena. They concluded when the body is starved, it runs out of glucose and creates ketones and then burns fat for energy. This is called ketosis. Even though science can’t fully explain it, this chemical change appears to stop seizures. This is where the diet comes into play. Eating a diet high in fat with no sugars, starches, and little carbs tricks the body into continually creating ketones, which controls seizures over a longer period of time. Within the first week, Jordan’s seizures decreased from one-hundred per day to about five or six, and sometimes none!

Jordan is now ten. She doesn’t talk and is severely mentally retarded, but she’s alive! Ann meticulously measures out her food down to the gram to keep her in ketoses. Vitamins are also very important to maintain her body’s overall health.  Jordan is in a catch-22 situation.  Without the diet, she has extreme seizure activity. With the diet, she faces health problems due to the high fat intake. Not an easy choice for a parent, but I believe God led us down this path. We have to go in faith that this is the best solution for Jordan — at least for now.

Although our family life is filled with daily challenges, it is also filled with daily blessings. Courtney loves her sister dearly and is a huge help to both her mother and me in the care of Jordan. We have also been blessed with a third daughter, Chloe Beth, who is perfectly healthy and totally precious. We are truly thankful for God’s hand in our lives.

My family had to settle down to be able to listen to God’s guidance in the trial we faced. We had to pray hard and get into His Word in order to help Jordan. I wonder how many times we accuse God of not hearing when it is us who are not really listening.  

Shane Martin is the youth pastor at Beacon Baptist Church in Barbourville. He can be reached at brothershane@beaconbc.org

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