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Special Needs

emma-rocks-and-rolls

 

Marine Corps Base, Quantico, Va.  -- The two year old was moving so fast I could barely keep her in focus long enough for my shutter to fire. While it is normal for a toddler to graduate from walking to running by time they reach 2, Emma Mondragon wasn't doing either. She was rolling.

emma1

She zipped around the hallways of the Quantico Marine Corps Base Chapel Religious and Family Service Annex in her sport model wheelchair like Danica Patrick on an Indy Series track. And she never lost control for a moment as she backed up, turned left, then right, and maneuvered her way past obstacles in the meeting rooms at the holiday party in December.

The rather precocious child with myelomeningocele Spina bifida is smart as a whip and most everyone who meets her agrees that 'Emma rocks.'

 

EMFP Program

Though she faces many hurdles in overcoming the disabilities associated with the birth defect, her mom Lindsey says Emma is relatively healthy. And she gets some of the best medical care available thanks to the Department of Defense Exceptional Family Member Program (EFMP). Lindsey married her high school sweetheart Benjamin. And she followed her Marine husband from Gillette, Wyo. to various duty stations. After about 3 years of marriage, the two conceived their first and only child. But the joyful anticipation of birth was soon replaced with concern.

 

A Complication

Four months into her pregnancy, Lindsey learned there was a complication. But unlike during the past century when Spina bifida sometimes went unrecognized until birth, the early diagnosis allowed for more focused prenatal care to help ensure that their daughter had the best chance of development. The couple was living in Yuma, Az. at the time but Ben was slated to transfer to Quantico for school. Knowing the situation was serious, his command assisted immediately in filing the paperwork necessary to enroll Lindsey in the EFMP. The program enabled the Sergeant to receive a compassionate early transfer to the Marine Corps Base at Quantico. The program also ensured that upon arrival at his new command the couple had priority access to base housing.

"We got housing the day we arrived here," said Ben.

 

Pre-natal Care

Even as they were settling into their new home on base, Lindsey was able to receive prenatal care at medical facilities in the area.On Dec. 10, 2007 the couple welcomed Emma to the world at the National Naval Medical Center in Bethesda, Md. Ben said the region has some of the best medical facilities available within a 50-mile radius. "Emma has been treated at Bethesda, Walter Reed, Children's National Medical Center in D.C., and Kennedy Krieger (International Center for Spinal Cord Injury) in Baltimore," he said. The Marine said the EFMP has allowed the family to be stationed where the specialty care his daughter needs is more centrally located.

"The family will get to stay in an area that can continue to provide for their needs," he said. "Quantico has a position for me in my MOS (military occupational specialty), but I could get stationed at another base on the east coast or even be assigned an unaccompanied tour in Korea."

Ben indicated that the program is set up to meet the family needs while still maintaining the needs of the Marine Corps.

 

A Stable Family

"It helps to know that Emma and Lindsey can stay where their needs can be met," he said. "The stability for the family is great."

Although there are major medical facilities on the west coast, Lindsey believes the family will spend most of the remainder of her husband's Marine Corps career in the local area. The couple tries to see their parents at least once a year, but know they are in the best situation possible despite the physical distance from their families.

"It is good to know that we can live somewhere that has treatment available for Emma," she said. "These types of medical facilities are not even available in Gillette, Wyo."

 

emma2Food Allergies

It recently became necessary to begin to feed Emma through an intranasal tube as she developed a digestive problem and was not able to maintain her normal weight.

"She has food allergies," said Lindsey. "A feeding tube will be put directly into her stomach, but we will also be able to start to slowly re-introduce solid foods for her to eat in the next few months."

Since Emma's diagnosis Lindsey no longer attends school, but she is continuing her higher education through on-line programs. She hopes to be able to complete her training in medical transcription, which will allow her to work from home so she can also be available to focus on Emma's care.Emma is in an early intervention program and will soon begin occupational therapy. Despite her physical limitations Emma is keenly aware of her surroundings and investigates almost everything in sight. Though she was hesitant to approach Santa Claus, which is normal for her age, she kept peeking through the threshold. Eventually, she let her mom hold her while standing next to him so Emma could get a closer look at the imposing red clothed figure of a man with the white beard. She is beginning to speak clearly and while cuddling with an oversized plush lion on the floor pointed out his eyes, nose, ears, and mouth. Most noticeable and impressive is the critical thinking abilities the 2-year-old exhibits. As she wheeled herself around the rooms at a rapid pace, she easily maneuvered around tables, chairs, and oversized plush animals, discerning in advance how to move her chair to avoid colliding with anything in her path.

 

Adaptable Emma

She cannot move her body below her hips, but Emma can scoot across the floor of a room in the blink of an eye. Her mom said, "She has developed exceptional upper body strength."

She has braces on her legs and Lindsey hopes to get her started with a walker in the next few months.There is little doubt that Emma will easily adapt. She spied a walker that another toddler was using and immediately scooted over to get a look at the mobility device. As the other girl began to walk away, Emma tried to pull herself into an upright position on the edge of a rocking chair. She needed a boost up into the seat from her mom. And as the holiday party began to draw to a close, Emma still rocked.

 

 

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