Tag Archives: Pediatric rehabilitation

No Limits

Mohammed and Ahmed Al-Ali are brothers from Ras Al-Khaimah in the United Arab Emirates (UAE). Both of their lives have been greatly affected by a diagnosis of spinal muscular atrophy (SMA), a condition that brought them half-way around the world in search of help.

SMA is a rare disease in which nerves in the spine become progressively weaker. In its most severe form, SMA can cause death in infancy. However, many children with milder forms can live long and fulfilling lives, despite challenges with scoliosis, breathing and the likelihood that the need for a wheelchair will limit their mobility.

Although Mohammed and Ahmed struggle at times with their limited mobility, I know that their futures are very bright and far from limited.

I first met Mohammed, the eldest of the pair, in 2009 when he came to Kennedy Krieger’s inpatient unit after a successful spinal fusion surgery at Johns Hopkins Children’s Center. The first thing I noticed about Mohammed was his smile; the second was his flawless English. But perhaps the most noticeable thing was Mohammed’s amazing family. Continue reading

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Walk a mile in their shoes…

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

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Twelve Hours

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!?!

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Posted in Developmental Disabilities, Miscellaneous | Tagged , , , , | 3 Comments

Miracle for Megan

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.

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Try, try again

I have never met a kid who tries so hard.

Even with the limited abilities he has, I have never seen Matthew Slattery sad or upset. If he ever feels sorry for himself, he never shows it. And he never seems to show up to therapy without a smile.

Of course, all of that is well and good—it makes him a pleasure to work with and helps everyone involved in his care to remain positive and hopeful. But it takes more than positivity to produce outcomes: It takes determination and perseverance—traits that Matthew has in abundance. Continue reading

Posted in Miscellaneous, Traumatic Brain Injury | Tagged , , , , , | 1 Comment

Job Opening: Fairy Godmother

If I had a magic wand, I would use it to prevent the illnesses and accidents that lead children and young adults to the inpatient rehabilitation unit at Kennedy Krieger. I would stop cars from crashing. I would stop cancer cells and tumors from growing. I would stop diseases that cause paralysis.

Unfortunately, my medical degree didn’t come with the additional title of Fairy Godmother. If it did, I could have used my magic wand on October 19, 2008. On that day, I would have stopped Matthew Silverman, a vibrant young teenager who loved music and fishing in his home state of South Carolina, from becoming ill. Continue reading

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All by himself

Miracles happen every day at PACT. Kendal is living proof.

Weighing just 1 lb., 1 oz., when he was born at 29 weeks, Kendal and his parents fought and prayed a lot during his first five months, which he spent in the hospital. Low levels of amniotic fluid caused intrauterine growth forced his mother’s doctor to deliver the baby boy early, both for his health and his mother’s.

It wasn’t until five months later that he was released from the hospital. When he came home, his mother took two months off of work so she could manage his multiple medications, heart monitor, doctor’s appointments, and sometimes challenging feedings. Because of his early birth and small size, he had multiple health and developmental problems. All of this in addition, plus adjusting to life with a new baby! Continue reading

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Defining Determination

I wouldn’t be surprised to look up the definition of “determination” in a dictionary, only to find a photo of a smiling John “Alex” Curtis.

On the day he was admitted to our inpatient rehabilitation unit, his mother told me, “You know, Alex is a very special child.” Of course, all of us parents think the same about our kids. But throughout his time with us, Alex proved his mother right.

Alex came to Kennedy Krieger Institute for intensive inpatient rehabilitation after he had an operation elsewhere to fix a chest wall abnormality called Pectus Excavatum. If severe and untreated, the condition can affect the ability to breathe. Unfortunately, a complication occurred during the procedure and Alex woke from surgery unable to walk.

I remember within those first few days, Alex told me in a matter-of-fact way that he was going to walk again. I hope for a full recovery for all of my patients, but experience has told me that nothing is guaranteed. Alex, however, didn’t need my hope or guarantee: He knew he would walk again. There was simply never any doubt in his mind. Continue reading

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Can I Play With That Nerf Gun?

It was almost three years ago when I met Noah Hanssen for the first time; his mother wheeled him into our therapy gym and I introduced myself as his new physical therapist. I wanted him to feel comfortable and safe – after all, new people and places can be intimidating for an 8-year-old, especially one in need of intensive therapy. And I’ve learned over the years when working with kids, sometimes we need a bit of a “warm-up” period before they show me their true personality.

But not Noah. Instantly I could tell that he is bright, adventurous, and active. His smile won me over in seconds, as he asked his most important question during our evaluation: “Can I play with that Nerf gun over there?”

Noah and I became a team over the next few months. Always fearless and unquestioning, he was motivated to try anything I asked of him, just so long as it was fun. He challenged me to get creative and cleverly disguise his therapy as rambunctious activities that any boy his age would love. Continue reading

Posted in Spinal Cord Injury | Tagged , , , , | 2 Comments

“Houston, we have a problem…”

One of my favorite movies is “Apollo 13”, a tale of astronauts who experience a near-fatal accident en route to the moon. With the help of mission control in Houston, they ultimately survive a harrowing attempt to return to earth alive. For them, failure was not an option.

For most of 2009, Daniel was a typical 13-year-old boy who enjoyed hanging out with his twin brother and loved playing with LEGOs. But that Fall, he caught H1N1 Influenza and never fully recovered. There was no explanation for why the influenza virus had hit Daniel so hard. He grew very weak, and, unable to eat, he needed a gastrostomy tube to provide the nutrition and calories his body demanded. Severe pain kept him out of school, out of his life, for over a year. His parents desperately wanted help for their bedridden son, who spent most of his time curled up in a fetal position. They saw doctor after doctor in New York, but nothing seemed to help.

Daniel’s last hope was Kennedy Krieger Institute. And so, in a final attempt to relieve the chronic pain that was ruining his life, he and his family came to Baltimore.

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