“I’ll be back soon”

There are many reasons why I am so glad to be part of the inpatient rehabilitation team at Kennedy Krieger. Driving more than an hour each way to and from work is not one of them! However, the determination, courage, bravery, and perseverance of my patients and their families tops the list most days. Morgan Dunnigan and her family are perfect examples of this positive spirit and how, despite tragic personal loss, it’s possible to overcome and return to the happy parts of life that you knew before. 

I first met Morgan on Jan. 10, 2006, the first day that she arrived on the inpatient rehabilitation unit here at Kennedy Krieger Institute. Morgan had experienced a spinal cord injury in December 2005, caused by a tumor in her neck. Morgan was barely able to make any of the muscles in her arms or legs work, and she couldn’t even hold her head up when sitting. She couldn’t roll over, sit up, stand, or walk. She completely relied on her parents and medical caregivers for help with mobility and daily living.

I clearly remember her first day. Morgan was anxious and scared, like any 6 year old would be in a strange hospital, far from her home in Virginia. But despite her fear and her physical limitations, Morgan’s spirit shined, and her ability to persevere made it clear to me that she would accomplish many good things during her time in Baltimore.

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It Takes a Family

As a social worker in one of the nation’s largest autism centers, I frequently meet families from all over who come to us seeking help for their child. They travel from across Maryland, from other states, and sometimes even from other countries. No matter where a family is from, each parent wants the same thing –the best chance for their child‘s future.

But, because their children struggle with communication, social skills, and behavioral issues, they worry what kind of future that might mean. These families know their children need help, and they are willing to literally trek around the world to get it.

And, they’re doing it all under extremely stressful circumstances. Families are sometimes scared and confused by all of the information out there about autism. Understanding the different terminology involved in a diagnosis—Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified, and Asperger’s Disorder—is hard enough.  Add to that the arrangement of school services, various therapies, and medical appointments, and any family could easily feel overwhelmed. I am truly awed by the strength these families find to cope with everything on their plate and also by the ways that they support their children. Continue reading

Posted in Autism, Developmental Disabilities | Tagged , , , | 7 Comments

Against the Odds

In my experience, Erica Carter is the rarest breed of foster parent.

Many of us in the Therapeutic Foster Care program were amazed when we encountered this woman. As a single mother in her 30s with a grown son, she defied foster care statistics when she welcomed a child with special needs into her home and then opened her door to the boy’s two brothers as well. But when she chose to adopt all three of the boys—each with developmental disabilities—she outdid herself.

Becoming a foster parent is a major decision on its own, with plenty of challenges and hurdles to jump. But finding foster placements for a child with special needs is especially tricky. Receptive parents are not only required to undergo additional training, but they also must be willing to do so. And while there are plenty of good people out there, even the most dedicated and generous of foster parents can find it challenging to care for a child with special needs.

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Posted in Autism, Developmental Disabilities, Miscellaneous | Tagged , , , , , | 1 Comment

Get a Grip!

In occupational therapy, much of our success hinges on our patients’ desire to work hard and succeed. After all, we can do everything in our power to help someone live a higher quality life, but at the end of the day, he or she HAS to be willing to do the work. Working with Kennedy Krieger’s Constraint-induced and Bimanual Therapy program, every day I watch kids work exhaustively to gain function in a limb that, until that point, they’ve been unable to use.

It helps when a patient has a goal, something that he’s passionate about, something that makes the struggle worthwhile. Well, Taylor Wilkerson has more passion for golf than any kid I’ve ever met—and probably most adults. But, having been diagnosed with cerebral palsy when he was 6 months old, he also had hemiparesis (muscle weakness on only one side of the body) in his left arm.

From the very beginning, what was so impressive about Taylor was that he was already excelling at the game as part of his school’s golf team in North Carolina. By his parents’ account, he already had a pretty powerful swing, but, because of his condition, his grip in his left hand was weak. So they brought him here to Kennedy Krieger for constraint-induced therapy.

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Posted in Cerebral Palsy, Hemiparesis | Tagged , , , , , , | 3 Comments

Exceeding Expectations

Before I meet a new patient for the first time, medical records are often made available to help me get up to speed on the child’s background and condition. As a result, I usually have a picture of the child in my mind before he or she comes through the door. It’s based on what I know from the medical literature and my own experience, of course, but there’s nothing better than when a patient reminds me of the brain and body’s capacity to overcome.

Bobby Nash Planzer is one of those kids. On paper, his medical history would suggest a bleak prognosis. He was born at 26 weeks weighing just over one pound, and spent nine months in the NICU facing the challenges presented by a brain hemorrhage and chronic lung disease. To say the odds were stacked against him is a huge understatement. For the first four years of his life, he couldn’t eat, speak, or breathe on his own. I can only imagine the picture that doctors probably painted for Bobby’s parents in those early days.

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Posted in Learning Disability, Pediatric Feeding Disorder, Prematurity | Tagged , , , , , | 2 Comments

Getting Her Voice…Again

Many of the children admitted to the inpatient rehabilitation unit at Kennedy Krieger have experienced a trauma or illness that resulted in needing a procedure called a tracheostomy. The procedure involves placing a tube in a patient’s neck to help him breathe, but the downside is that it robs them of the ability to speak. Seeing a child with a “trach” tube in place can be heartbreaking for the casual observer. Seeing your own child with it is devastating.

As a mom, it is hard to imagine my boys without the ability to speak. Not hearing their voices greet me or saying “I love you, Mommy” would be unbearable. I am inspired by parents who learn to live with this loss.

However, many of our patients are able to recover and ultimately get their tracheostomy tubes removed. Continue reading

Posted in Acute Respiratory Distress Syndrome, Miscellaneous | Tagged , , | 5 Comments

Best Job in the World

Hi, I’m Suzanne Prestwich, the medical director of the Inpatient Pediatric Rehabilitation Unit at Kennedy Krieger Institute. I’m looking forward to sharing stories of our patients with you each month. I work as a pediatric hospitalist—a growing term in medicine for those of us who specialize in taking care of patients while they are staying at a hospital.

I’m also a mother to two elementary school aged boys, ages 7 and 9.  When I’m not at work, you might meet me at a soccer game, a Cub Scout activity, or at a school play. I am a regular “Dr. Mom.”
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Inspiring Potential

Welcome to Kennedy Krieger’s first venture into the blogosphere. Here at the Institute, the work we do is rooted in the belief that all children, regardless of a disability, should have the opportunity to reach their full potential. Our Web site and magazine are filled with stories of how our physicians, nurses, therapists, and teachers help to unlock the potential of patients and students through innovative and compassionate care, education and research. But the untold narrative is how these patients and students profoundly inspire the employees of Kennedy Krieger who feel privileged to play a small (and often a big) part of their lives. And so we introduce Inspiring Potential, a blog to share how the kids we meet here at Kennedy Krieger give meaning and inspiration to the work that we do. We look forward to your feedback and comments. Email us at InspiringPotential@kennedykrieger.org.

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