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Visually Impaired Parents Prove There Are No Limits to Care

Ruth, 3, was diagnosed with a rare gastrointestinal disorder. Despite having a blind mother and partially sighted father, Ruth’s parents proved it was possible to learn the complicated skills that were required to manage her health at home.

For many parents, caring for a child with a serious medical condition can have its challenges.

For Hailee and Ray Hughes, the challenge of caring for their 3-year-old daughter, Ruth, who has a rare gastrointestinal disorder, meant learning complicated skills like how to maintain Ruth’s nutritional needs intravenously through a tube connected to her chest.

“It definitely wasn’t easy at first,” said Hughes. “There was a lot to learn and we wanted to safely care for our daughter in the best way we could.”

Learning the proper techniques involved in Ruth’s care was one thing, but doing it with partial to no vision was another.

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Twin Holds on to Life to Celebrate First Birthday With Sister

Amani Jackson and her identical twin sister, Amira, possess a rare bond that began in their mother’s womb.

Up until the moment they were born, grasping on to one another, their bond remained unbroken.

It wasn’t until surgeons noticed one of them wasn’t quite like the other, that they needed to part ways.

“Although they were both premature, Amira came out healthy as can be,” said their mother, Stranje Pittman. “However, as soon as the doctor saw Amani, they knew something was wrong. Before I knew it, she was rushed out of the operating room and immediately taken to Seattle Children’s.”

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Patients Share Their Top Resolutions to Ring in the New Year

With the countdown to the New Year almost here, On the Pulse caught up with a few of the patients who inspired our readers with their stories throughout 2018. Below, they offer their hopes, dreams and goals for the year to come.

A shoulder above his cancer, Miguel sets sights on giving back

Miguel Navarro, 19, is focused on the road ahead after treatment for a rare bone cancer.

In 2018, doctors built a right shoulder for Miguel Navarro, 19, after surgically removing an aggressive type of bone cancer known as osteosarcoma that threatened his life. Miguel spent most of the last semester of his senior year of high school in the hospital going through chemotherapy and intensive rehabilitation to regain the use of his right arm. Now, he’s solely focused on the road ahead – one that includes getting back to a hobby he’s passionate about – driving his stick shift car – and giving back to others.

“My goal for 2019 is to give back to the community that took care of me and supported me during my time of need,” Miguel said. “I’m blessed to be alive. Now, I want to be hope for someone else.” Read full post »

Therapy Dog Lee Roy Brings ‘Howliday’ Joy to Families

Lee Roy, a 12-year-old miniature dachshund, has been volunteering as a therapy dog at Seattle Children’s for over a decade. He loves the holiday season, says his owner and handler, Gordon Knight.

A few little jingles from a furry friend can go a long way during the holiday season at Seattle Children’s.

Lee Roy, a 12-year-old miniature dachshund, can be seen trotting down the halls of the hospital in festive attire made complete with tiny bells that announce his delivery of warm cuddles to patients.

“Lee Roy loves the holidays,” said his owner and handler, Gordon Knight. “It’s almost like he knows it’s an extra special time to spread cheer to patients and their families.”

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Sam Shares His Struggle With OCD Through Candid Melodies

Sam Foster, 19, has struggled with obsessive compulsive disorder for most of his life. At first he felt ashamed of it, until he began expressing himself through music and underwent intensive treatment at Seattle Children’s. Photo credit: Christopher Nelson

When Sam Foster steps onstage, guitar in hand, he lights up the room with his confident presence.

Yet behind his poised demeanor is a painful truth that begins to unravel as he lets his lyrics flow through the microphone.

Sam has battled with obsessive compulsive disorder, or OCD, most of his life.

According to the National Institute of Mental Health, OCD is a common, chronic and long-lasting disorder. It occurs when a person has uncontrollable, reoccurring thoughts, known as obsessions, and behaviors that they feel the urge to repeat over and over, known as compulsions.

In response to the social stigma that often surrounds mental health disorders, Sam initially felt ashamed of having OCD. That was, until he began expressing himself through writing music and eventually got the treatment he desperately needed.

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Zack Finds His Beat Amidst a Life Full of Challenges

For 13-year-old Zack Edge, playing the drums came naturally ever since he laid his eyes on his very first drum set at 3 years old.

Yet other parts of Zack’s life didn’t come so naturally, such as his ability to stand or walk.

“Zack was born with cerebral palsy,” said his mother Sara Edge, “and over the course of his short lifetime he’s gone through a lot and has had to overcome so much.”

Cerebral palsy (CP) is a condition that affects muscle movement. The muscles of some children with CP are stiff and rigid, which is called spasticity that leads to stiffness in the muscle and joints causing movement to be very difficult.

“It wasn’t until we went to Seattle Children’s that Zack’s life completely changed,” said Edge.

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April Discovers Power in Her Voice Through Selective Mutism Program

April Merrill is a 6-year-old who loves to sing and dance. Yet, her struggle with an anxiety disorder called selective mutism hinders her ability to do the activities that showcase her vibrant and joyful personality.

“Her voice disappears, as April describes it,” said Kelly Merrill, April’s mother. “She said that she wants to talk but can’t seem to find her voice.”

As April was growing up, Merrill noticed signs in her daughter that indicated something might be wrong.

“When April started to talk, she could only verbalize 20 or so words,” said Merrill. “She was 2 years old at the time and I noticed she couldn’t expand her vocabulary.”

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When the Going Gets ‘Ruff’, Kids Find Comfort From a Four-Legged League of Heroes

In honor of National Dog Day, On the Pulse is recognizing three unique four-legged visitors who bring joy to kids at Seattle Children’s.

When a child is in need of some cheering up during a hospital stay, Seattle Children’s knows just the right MVP for the task – Most Valuable Pup that is. With their wiggling tails, wet noses and oozing charm, each of the nine volunteer therapy dogs in Seattle Children’s Animal-Assisted Activities Program harnesses their unique strengths and abilities to bring a smile to every patient they meet.

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Boy Born With Life-Threatening Condition Rises Up For a Brighter Future

In 2009, during Laurina Barker’s 20-week ultrasound, she and her husband Ryan received news that no expecting parents want to hear.

“The technician turned to me and said something looked different and that they would have my doctor call me,” said Barker.

A couple of days later, the Barkers would learn their baby had congenital diaphragmatic hernia (CDH), a rare birth defect where a baby’s diaphragm does not form completely. This leaves a hole between the abdomen and chest allowing their organs, most often their intestines and liver, to slip through the hole and up into the chest.

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Anesthesia Bag Art Lifts Spirits of Kids Undergoing Surgery

When 4-year-old Sho Hansen entered the doors of Seattle Children’s Bellevue Clinic and Surgery Center to get his tonsils removed, he clung on tightly to his mother.

“After his name was called and we sat in the exam room, all he wanted to do was sit in my lap and not acknowledge anyone that came in to talk to us,” said his mother, Lisa Hansen. “Sho is shy and tends to get nervous around people he doesn’t know well.”

One of the staff members in line to help prepare Sho for his surgery was a nurse anesthetist named Anisa Manion.

“My role at the clinic is to administer anesthesia to patients to help them fall asleep before going into surgery,” said Manion. “We’re given a short period of time to get kids as comfortable as possible. The process can be very challenging — many kids are anxious and nervous, so the friendlier we make the environment for them, the easier it is for them.”

Manion has a special trick up her sleeve when it comes to calming kids down during the pre-surgery process.

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