Jordan Dixon celebrates improvements with Conquer Chiari Walk

Last updated: October 07. 2013 5:06PM - 2619 Views
Emily M. Hobbs Staff Writer

Courtesy photoJordan Dixon is enjoying her new lease on life.
Courtesy photoJordan Dixon is enjoying her new lease on life.
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Jordan Dixon’s journey to health started with a mysterious condition that was dismissed by doctors as being something that she was just going to have to live with. Turning 10 next month, Jordan is a vivacious and energetic girl that is beating odds and making moves one day at a time.

Jordan’s delays were noticed shortly after her younger brother was born. Her parents saw that she was not keeping up with her 13-month-old younger sibling and felt that something just was not right. Wendy and Joe Dixon knew that something was different about their oldest child but they could not put their finger on exactly what, but they knew that with time God would show them the answer.

Over the years, a barrage of doctors began trying to pinpoint exactly what was so different about Jordan but only at her parents’ request. The doctors were baffled. She had been through so many procedures and examinations that it seemed that she was going to be poked and prodded for a long time. Wendy, her mom, said that she visited all kinds of doctors, from an endocrinologist and a psychologist to a nutritionist and a urologist. That urologist is the one who opened the door to the explanation that her parents had been diligently seeking for so long.

Some doctors told them that Jordan was the way she was and she was going to have to just deal with it. Some said nothing was wrong. Some said it was because she needed to eat better. Nevertheless her parents knew that those supposed answers were not the cure to finding out what ailed their oldest child.

Meanwhile Jordan was suffering from headaches, developmental delays, trouble climbing stairs, tremors, and even balance and coordination problems. There were many days in school where she would have headaches every hour or few hours.

Starting in the fall of last year,her parents took her to a urologist for an unrelated issue. The urologist examined Jordan and thought there was something going on. Upon describing her symptoms, the doctor thought that Jordan might have something like spina bifida and he thought she needed an MRI to get a clearer picture. After hearing that, Wendy Dixon told the doctor that she wanted a full body MRI completed due to some other slight abnormalities that might be present.

Right after that full body MRI, the doctor called the next day and said it was a Chiari malformation. The family was shocked. They finally had the answer to the problems that had been plaguing Jordan for so long, and a solution to beginning her recovery. The back of her brain, in the area called the cerebellum, was pushing down into her spinal column and blocking the flow of cerebral spinal fluid.

“We felt that she was perfect enough the way she was, but this Chiari decompression surgery was about improving her quality of life,” her parents said. Their biggest concern was the constant headaches that were plaguing her every day at school. The doctors encouraged Jordan to start a journal for her headaches, and what the family discovered really opened their eyes to what she had been dealing with for so long.

There were days where she would have headaches for hours at a time. These headaches, combined with her focus problems, made it very hard for Jordan to stay on top of school work. Because of all the problems she was having, she was slower at math and had a slower rate of speech from her peers. Sometimes she would pause in her sentences, almost like a barely perceptible breath, as if she was gathering her thoughts together to visualize what she was trying to say.

Her surgery — which was on Jan. 25, 2013 — was what moved her life forward and started the long road to recovery, a recovery that would not have been possible without God’s help, her parents said. This surgery also paved the road to other surgeries that Jordan needed for tethered cord syndrome which is often seen in patients with Chiari malformations.

“There were a lot of God-things that happened,” said Wendy Dixon. “We could not have done it without that support.” With all the different people that have come into the lives of the Dixon family, God has definitely been right there at the front, moving things along.

Two different churches brought Jordan prayer shawls. The family was so blessed with all the outpouring of support that they received. Friends and co-workers of the family brought them snacks and goodies to take to the hospital with them. Jordan spent three nights in the hospital with the first night being in the Intensive Care Unit, and that first night, Wendy remembers the nurse coming in and talking to Jordan, asking about how she was feeling. Her mother looked at the nurse in shock.

“I was so surprised in the immediate change in her speaking patterns the nurse asked me if something was wrong,” Wendy said. She explained to the nurse that nothing was wrong, but it was just the first time she had heard her daughter speak so quickly with a normal speech pattern.

After the surgery, Dr. Gerald Grant, the pediatric neurosurgeon, told the family that when they did they surgery on the back of Jordan’s neck the cerebral spinal fluid started gushing. It was so blocked up in the back of her neck and head that it was not circulating at all. The back of her neck and head was not large enough to accommodate her brain. The surgery corrected that problem, and has helped Jordan so much that she has regained a new lease on life. She was home schooled for three weeks after this surgery and one of the teachers at her school, Butler Avenue, volunteered to help with the extra work that Jordan was going to have to do to keep up.

“I don’t take prayers for granted,” said Joe, Jordan’s father. “I have learned that prayers are so worth so much more than earthly things.” The family expressed a massive appreciation for the community that has rallied behind the family and Jordan which was rather unexpected considering the large number of people that they did not even know were taking the time to pray for them. Their church family, Facebook friends, and co-workers all stepped up to help and show their support of the family, which is very gracious for all the blessings that have been bestowed upon them by the Lord. Butler Avenue School, Team Jordan, Zoar Church, plus lots of others helped make this time of trial an excellent growth moment for the entire family.

This year the family participated in the Conquer Chiari Walk Across America on Sept. 21. Jordan helped with raising over $700 for research on the Chiari malformation. The CCWAA raised over half a million dollars this year. If you would like to donate to this cause or find out about next year’s walk on Sept. 20, 2014, please visit www.conquerchiari.org.

“We really wanted to raise money for this cause in hope of finding a cure through research,” said Wendy. “I would hate for other parents to have to go through all of this.” Not only is Jordan growing up to be an excellent young lady, the family has learned the value of trusting God in His plans. She is greatly improving and is feeling much better than before.

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