- Acute Respiratory Distress Syndrome
- Anoxic Brain Injury
- Asperger's syndrome
- Autism Spectrum Disorder
- Cerebral Palsy
- Developmental Disabilities
- Down Syndrome
- Duchenne Muscular Dystrophy
- Foster Care
- Genetic Disorder
- Intellectual Disability
- Learning Disability
- Osteogenesis Imperfecta (OI)
- Pectus Excavatum
- Pediatric Feeding Disorder
- Spina Bifida
- Spinal Cord Injury
- Spinal Muscular Atrophy
- Transverse Myelitis
- Traumatic Brain Injury
Monthly Archives: September 2011
I am blessed with two happy, healthy kids. My boys, Will and Tom, have never had major medical issues. My days, however, are filled with children facing tremendous challenges, so when my youngest son needed surgery for the first time, it was an opportunity for reflection.
Like me, Tom had huge tonsils and was often sick during the winter with the dreaded strep throat. Our friendly ear, nose and throat surgeon at Johns Hopkins, Dr. Stacey Ishman, recommended a tonsillectomy and adenoidectomy. As a physician, I already knew the risks of surgery. I know that many things can go wrong during an operation. I have seen firsthand the unexpected complications of routine medical procedures. In reality, there’s no such thing as a “routine” surgery. Continue reading
As a weekend nurse on the inpatient unit at Kennedy Krieger, I work 12-hour shifts every Saturday and Sunday, caring for children with challenging injuries and disabilities. My own children, at 11 and 15 years old, spend their weekends engaged in a variety of fun activities, free from the grind of the school week. Last year brought a move to a new home in southern Maryland—Calvert County to be exact—which doubled my commute time to 90 minutes each way.
I often meet new people at my children’s school, and, as we get to know each other, we eventually come to the inevitable question of where I work. I’ve had this conversation enough times that I know what comes next. I tell them that I am a nurse—not terribly unusual since most people know someone in the medical field. Then, I tell them that I work at Kennedy Krieger… in Baltimore. The actual response may vary, but the implication is always the same: Why!?!
I first met Megan Miceli when she was 6 months old. She was a beautiful little girl with blond hair and blue eyes and an infectious smile that reached from ear to ear. But when her parents noticed that Megan wasn’t hitting milestones at the rate her siblings had, they grew concerned and brought her to Kennedy Krieger.
With weekly physical therapy sessions and her mother diligently working with Megan at home, she slowly began making strides in her motor skills. In the meantime, an extensive medical workup revealed she had hypotonia and a gene microdeletion, which was the root of her medical problems. The gene deletion is so rare that there have only been six reported cases since 2009. In addition she was also recently diagnosed with episodic hemiplegia, another disorder that affects 1 in 1 million people. Without warning, Megan can experience an attack of paralysis on the left side of her body multiple times per week, each lasting between 5 and 20 minutes.
Working on the inpatient unit of the International Center for Spinal Cord Injury at Kennedy Krieger Institute, I’ve had the opportunity to work with so many incredible patients and families. I am often the first therapist the family has met since their child (or young adult) was first diagnosed with a spinal cord injury. In this role, I get the opportunity to help turn a challenging and traumatic situation into one of hope and recovery. It’s a privilege to work with these families during this emotional time of transition.
This past May, I met the Jermano family, to whom I would like to dedicate this blog. Their quest to create a fulfilling life for their daughter Mia, along with their continuous hope for her recovery, is truly an inspiration to my work.