Kendrix

Hey mom, did you see what I just did?

Although three-year-old Kendrix can’t communicate with words, his big brown eyes convey the message along with his ear-to-ear grin. No words necessary. Dystonic Spastic Quadriplegia Cerebral Palsy has left Kendrix unable to control the use of most of his body, but what it hasn’t taken away is his determination, charm and lovable spirit.
Kendrix was born in Pratt, Kansas at 10:15 am on June 16, 2008. A seemingly healthy six pound two ounce baby boy, he entered the world at 35 weeks to proud parents Traci and Travis. But a few short hours later their world was turned upside down.

“He started having difficulty breathing so the nurse took him to check him out,” said Traci. “At first they thought because he was premature his lungs needed a little help so they put him on a CPAP.”

They kept Kendrix in the nursery for observation and around 6:00 pm doctors returned to Traci’s room with grim news – Kendrix had coded and they were sending him to Wesley Medical Center in Wichita.

“My heart dropped. I was in shock,” said Traci. “Travis and I didn’t know what to think. We already had a little girl who was perfectly healthy and now we were having to leave her with grandparents and had no idea what was going on with Kendrix.”

Without hesitation, Traci and Travis left Pratt to be with their baby boy, not yet 12 hours old.

Preliminary tests showed that Kendrix had pneumonia. With no change in two days, doctors ordered a spinal tap to try to find more answers. They found nothing of concern. Test results from the hospital in Pratt arrived the next day and they discovered Kendrix’s pneumonia was resistant to the penicillin he was on so they immediately ordered new medicine. Lethargic, Kendrix still hadn’t improved. Finally at the suggestion of a neurologist, doctors tested his ammonia levels. They were 170 times the normal range for a newborn. That test started a series of events that helped save and change the course of Kendrix’s life.

Most ammonia in the body forms when protein is broken down by bacteria in the intestines. The liver normally converts ammonia into urea, which is then eliminated in urine.

Born on a Monday, Kendrix was flown via Life Watch to Children’s Mercy Hospital in Kansas City on Friday where he was under the care of a geneticist who specialized in metabolic disorders causing high ammonia levels.

While at Children’s Mercy, Kendrix was placed on an Extracorporeal Membrane Oxygenation (ECMO) machine which provided both cardiac and respiratory support to patients whose heart and lungs cannot serve their function. He was also placed on hemodialysis to remove waste products, as well as free water from the blood.

“This was the only chance that he had to survive the high ammonia levels in his body,” said Traci.

According to Traci, if his ammonia levels didn’t come down within the first 24 hours of treatment, his survival chances would drop dramatically.

While on ECMO, Kendrix had to take a blood thinner to eliminate the threat of a blood clot in the machine. Traci and Travis were informed of the possibility of a hemorrhage due to the blood thinner, but when given the alternative, they had to take the chance.

“It was not a hard decision to put him on the machine,” said Traci. “They asked if we wanted them to take life saving measures. The answer was yes.”

After two days of being on ECMO, Kendrix developed a bilateral brain hemorrhage.

“Anytime anybody hears brain hemorrhage it is traumatic, let alone in your child that isn’t even a week old,” said Traci.

After discussing their options with the doctors, Traci and Travis decided to take Kendrix off of ECMO and dialysis to avoid any further hemorrhaging, hoping medicine alone would keep his ammonia levels in check. It worked.

Because of the trauma to Kendrix’s brain doctors told Traci and Travis that Kendrix would most likely develop cerebral palsy.

“It was scary,” said Traci, “but a minute price to pay to have our baby boy here with us.”

Although his ammonia levels were under control, Kendrix was still not out of the woods. His lungs were very weak and he was kept on a ventilator for three weeks. As doctors debated whether to take him off of the breathing machine, Kendrix seemed to make the decision for them, pulling out the tube himself.
“We joke that he heard them talking about weaning him off the vent(ilator) so he just took the initiative to do it himself,” said Traci.

No longer connected to any machines, Traci and Travis finally got to hold Kendrix. It had been three very long weeks.

“It was such an amazing morning when we walked into the NICU and we were told we could hold him,” said Traci. “I can’t explain what that felt like.”

Still on oxygen, Kendrix left Children’s Mercy Hospital just two days shy of his one-month birthday. His ammonia levels were well within the normal range, but he was placed on a no protein formula and medicine for safe measure.

Traci and Travis were still waiting to find out what caused all of Kendrix’s complications. After two additional checkups with the geneticists, the DNA tests came back negative. Kendrix did not have a metabolic disorder and was taken off all dietary restrictions. He was, however, diagnosed with transient hyperammonemia of the newborn.

“They said that his liver wasn’t functioning correctly since he was premature and that caused the buildup of ammonia,” said Traci.

Thankful for the good news, Traci and Travis still knew that Kendrix could easily develop cerebral palsy as a result of the brain hemorrhage he suffered while on ECMO. That diagnosis came when he was one year old. Not only does Kendrix have cerebral palsy, he has Dystonic Spastic Quadriplegia, one of the most rare forms that affects his entire body.

Kendrix suffers from severe stiffness in his muscles and the dystonia prohibits brain signals from getting to muscles and triggers a repetitive spastic movement keeping him from doing what he wants to do.

In August 2009 Kendrix had his adenoids removed and tubes placed in his ears – a very common surgery for many toddlers. Following that procedure Kendrix’s weight began to decline. He had a gastric feeding tube (G-tube) inserted into his stomach in January 2010 to help maintain his weight and ensure he received all the necessary nutritional elements of a healthy diet.

At the same time he also developed a respiratory problem and doctors were concerned that his tongue was falling back into his throat and blocking his airway. They suggested an invasive procedure that would require breaking his jaw and placing pins to lengthen his jawbone.

Hoping to find an alternative solution, Traci discovered Gillette Specialty Children’s Hospital in St. Paul, Minnesota.

“We were told that Kendrix’s breathing issues were very minimal compared to some of the children that they see,” said Traci. “He has hypoventilation, where his oxygen saturation level drops while he is sleeping and his CO2 level rises.”

Doctors were able to find a medicine regimen that has helped Kendrix with his spasticity and dystonia enabling him to control his body a little more and helping him breathe more easily, keeping him from any further surgeries in the near future. Along with two medicines that he takes daily, Kendrix also receives Botox injections every five months.

Kendrix requires a significant amount of therapy due to his cerebral palsy. He began attending an infant toddler program in his hometown of Pratt in August 2008, which provided lots of stretching and massaging. Unfortunately the infant toddler program was only able to provide services to Kendrix once a month, so Traci began to research other options.

“I found Heartspring while doing an online search for therapy for children with special needs,” said Traci. “His doctors at Children’s Mercy (which he saw once a month) wanted more therapy and so did we. We could see Kendrix’s willingness to work. He just needed the guidance. I read about all of the wonderful things (Heartspring) has done so I called and set up his evaluations.”

Kendrix started physical and occupational therapies at Heartspring Pediatric Services in September 2009, just after his first birthday. It wasn’t long before Traci noticed that Kendrix was making great progress.

“He’s so happy to go (to Heartspring) and play,” said Traci.

With both physical therapist Cheryl Jabara and occupational therapist Mimi French, Kendrix is working on walking, sitting, crawling, balance activities, trunk stability and mobility exercises, fine motor skills, bilateral coordination, and self-help skills. Despite having many obstacles to overcome, Kendrix has displayed his fight since birth.

“When he was in the NICU we called him our little soldier,” said Traci. “He is still our little soldier and fights every day for what he can do. He has proven to us and our family that you never let anybody tell you that you can’t do something.”

Through determination Kendrix has made great strides in therapy. “He has developed independent mobility through commando crawling and he can do reciprocal crawling with assistance,” said Cheryl. “He loves to be able to stand up with support and play with toys. Last year we worked really hard to get him upright and walking. It was amazing to see him light up the first time we went for a walk outside the gym.”

With his new Rifton Gait Trainer (specialized walker), Kendrix can walk independently, something many doctors warned he might never do.

“We were told that Kendrix probably wouldn’t be able to do much of anything but lay around,” said Traci. “Well, that is far from what he does.”

Unlike the majority of the children who receive therapies at Heartspring, Kendrix does not live in Wichita. In fact, Traci drives three hours round trip from Pratt to Wichita twice a month so Kendrix can see his therapists, Mimi and Cheryl.

“It didn’t matter how far we had to drive. As long as we’re able to pay for gas, that was my only concern,” said Traci.

“We were coming once a week for a few months, but it was a big financial burden and we had to drop down to twice a month. Kendrix’s face lights up so much when we pull up to Heartspring. I can’t take that away from him.”
Kendrix also receives physical and occupational therapies at home, but according to Traci, she couldn’t take him away from Mimi and Cheryl. Both therapists have built special relationships with Kendrix.

“I wouldn’t trade them for anything,” said Traci. “Mimi has a way to get him to do just about anything without throwing a fit. She is the only person that can walk up to Kendrix when he is upset and she starts talking to him, or singing, and he immediately calms down. I’m the only other person I know that can do that and I have to hold him to make it better and sometimes that doesn’t even work.”

Cheryl will tell you that it is his great smile and personality that make it easy to work with Kendrix.

“Although he is non-verbal he can tell you a lot with his facial expressions,” she said. “And the older he gets the more he’s trying to tell us.”

Communication has been a struggle for Kendrix since he does not have the ability to speak. Traci and Travis were able to purchase an iPad for Kendrix this summer thanks to donations they received. Although he’s only had his iPad for a short time, Traci sees potential and is excited for the future.

“It’s amazing how quickly he’s caught on to some of the learning games,” she said. “It is amazing what this can do for him.”

He has a speech therapist that works with him at home and will also accompany him to his first year of school this fall. Hopefully with the ability to communicate Kendrix will be able to showcase his intelligence even more.

“I was blown away during his preschool screening,” said Traci. “It was amazing. He obviously knows a lot more than I thought he did. And with the iPad he can do so much so quickly.”

Despite some limitations Kendrix is constantly on the go. Along with his sister Rayden he is out and about fishing, swimming and taking in baseball or basketball games.

“People are shocked at how much we do with him,” said Traci. “It’s very important that he have every opportunity available to him. We don’t want to isolate him.”

Kendrix’s progress is also made possible, in large part, to Traci’s commitment to his growth.

“She works tirelessly with him to help maximize his potential,” said Mimi. “She follows through on home recommendations. She performs stretches daily to all extremities, works on grasp release activities, mobility, reaching and stretching exercises, sitting balance activities, along with the usual fun mom craft activities like coloring and painting, and takes him to the park where they play every type of ball game possible.”

According to Cheryl, one of the most amazing parts about working with Kendrix is watching the support he receives from his mom.

“She is the type of parent that is an active participant in her child’s therapy and wants to know what things she can do to help further his development. She works hard with him at home and you can tell from week to week.”
Traci and Travis are very aware of the struggles that Kendrix will face in the years to come. And although they say it might sound vague, they don’t want to put any expectations on him.

“It would be easy for us to say that we want him to be able to walk and talk and be independent, but in all honesty it won’t be that easy,” said Traci. “He is learning how to walk with a gait trainer and if that is what he can do then we are extremely happy with that. He is learning to communicate through an iPad. He can now sit with little assistance. We are extremely happy with all of this considering everything Kendrix has been through.”

“Whatever Kendrix does we are happy with because we have our little boy with us. There is a quote that says, ‘There are so many people out there who will tell you that you can’t. What you’ve got to do is turn around and say, “watch me.’”

As a result of their journey with Kendrix, Traci and Travis started a 5k run/walk in Pratt to raise money for other families of children with cerebral palsy.  

“We wanted to raise awareness about cerebral palsy and use the money to help families in town with medical bills and equipment,” said Traci. “We wanted to help because we know how hard it is to get to appointments and how expensive it is. Last year we were able to help four families.”

The second annual Walk So Others Can and is scheduled for October 1.

Traci has taught Kendrix a simple sign that represents “I love you”. He touches his hand to his chest and then points at the recipient of his message. That innocent gesture means the world to his parents.

“He gives me strength on days when I feel like I just don’t want to do anything or feel helpless,” said Traci. “When I feel like I haven’t done enough for him he will be there and say ‘love you.’ He can make your heart melt.”