Oct 23

Will's Story

For Down Syndrome Awareness Month, Speak Now for Kids chatted with Lynn, Will’s mother, to learn about Will and his health journey at Mt. Washington Pediatric Center.

When she was 21 weeks pregnant, Lynne went in for a routine ultrasound. Experts noticed her son’s pinky was small. After a follow-up test, it was determined that her baby, Will, had Down syndrome—or Trisomy 21.

“The first 24 hours were rough,” says Lynne. “We relied on Mt. Washington Pediatric Hospital for the first few weeks of his life. They provided a nurturing environment for us during this stressful period.”

Now 5 years old, Will is doing amazing! He’s currently in kindergarten and loves to sing, dance, play soccer and draw. He is full of energy and enjoys being outside with his brothers.

“He’s a typical toddler,” she says when asked what it’s like being a parent of a child with Down syndrome. “He’s running around everywhere, getting into everything that toddlers get into.”

Oct 18

Wyatt's Story

Wyatt is a typical 4-year-old. He loves LEGOs, watching baseball and playing fetch with his dog. But, unlike most kids his age, Wyatt has a rare form of dwarfism—he has had to overcome many obstacles in his young life. For National Dwarfism Awareness Month, Speak Now for Kids chatted with Jenn, Wyatt’s mother, to learn about Wyatt and his health journey at Children’s Healthcare of Atlanta.

It wasn’t until my son, Wyatt, was 10 weeks old that doctors discovered he has significant spinal cord stenosis. His doctors were unsure if surgery was needed to prevent further damage to his spinal cord.

A temporary solution was introduced, and Wyatt was fitted with a cervical neck brace to see if any damage to his spinal cord could be reversed. Because Wyatt was so little, the specialists had a hard time finding a cervical collar small enough to fit his tiny neck. Coincidently, Wyatt’s dad worked for a surgical equipment company that specializes in spinal implants. With the help of donations from his employer, Kevin began making his own cervical braces for Wyatt at home.

To have a place like Children’s Healthcare of Atlanta (CHOA), where the specialists are all in one place, is so important. With the help of weekly physicals, occupational and speech therapists, and close observation by numerous specialists, Wyatt is now a thriving toddler!

Oct 16

World Spine Day

Taking place on October 16 each year, World Spine Day highlights the importance of spinal health and well-being.

When Caleb arrived at Shriners Hospitals for Children — Chicago, he had a spinal curve of 120 degrees. Diagnosed with kyphosis, a condition in which the spine is curved and protrudes outward, Caleb’s family turned to Shriners to help for the son they recently adopted from China. In addition to kyphosis, Caleb was born with multiple congenital anomalies in his lower extremities, including clubfoot and hip dysplasia. Caleb is also deaf and is working to learn sign language.

Purnendu Gupta, M.D., chief of staff and pediatric spine surgeon, met with the hospital’s spine team and determined that operating with two surgeons would produce the best outcome. A 3D printed model of Caleb’s spine helped the team prepare. Working with 3D models allows surgeons to see the malformations from various angles.

The evening before his surgery, Caleb was feeling nervous. After seeing Caleb was uneasy, Gupta sat on the floor alongside Caleb to show him the 3D model, which helped ease the nerves.

The 10-hour surgery significantly reduced Caleb’s spinal curve and gave him several inches in height. He will continue his care with the orthopedic team at Shriners for his lower extremities.

“At Shriners, we have team of nurses, physical therapists, occupational therapists, care coordinators, child life specialists, recreational therapists and more who work with our patients every step of their medical journey,” says Gupta. “This team approach allows for great outcomes and recovery with the children we treat.”

Photo: Cathleen Himes
Shriners Hospitals for Children-Chicago

To view more photos visit Children’s Hospitals Photo Exhibit.

Oct 11

Why I'm Proud to be a Pediatric Nurse

National Pediatric Nurses Week is from October 7-11, 2019. Today, Carol shares her testimonial as a nurse.

From the first day of nursing school, I knew I would become a pediatric nurse. But I didn’t know I would find my calling in pediatric surgery.

One day during my clinical rotation in the O.R., I could feel the department suddenly “buzzing” more than usual. Near the end of my shift, I found out we were getting a new heart for a very sick baby. At the time, pediatric heart transplants were relatively rare so I did not want to miss this operation.

I watched in total awe for hours. Just as the baby’s new heart was sewn into place, the chief surgeon motioned for me to stand next to him. He took my hand and placed it on the baby’s new heart. Within moments, she was taken off the bypass machine that had kept her alive during surgery. I felt her heart beat for the very first time.

Oct 08

A Nurse's Love

Photo: Priscilla Baierlein Shriners Hospitals for Children Medical Center-Lexington; Kentucky

Two-year-old Maggie has just received her fourth Mehta cast to treat idiopathic scoliosis, a curvature of the spine. Mehta casting is a succession of casts that have been shown to be the best treatment for children with scoliosis, typically applying a new cast every six to eight weeks. Full correction can be achieved without invasive surgery.

“Patients tolerate casts extremely well and is a much better option than bracing,” says Henry J. Iwinski,Jr., M.D., chief of staff and pediatric orthopedic surgeon at Shriners in Lexington. “This treatment method has been revolutionary in the care of these children.”

After Maggie came out of anesthesia with a pink Mehta cast wrapped around her stomach, she became anxious. Post-anesthesia care unit nurse, Katy, picked Maggie up to comfort her as she rested after a tough procedure.

Sep 18

The Boxer

Gavin is a fighter. At age 9, he was diagnosed with Ewing sarcoma, a very rare type of cancerous tumor that affects about 200 people each year. Most often found in males, Ewing sarcoma grows in the bones or the soft tissues surrounding the bones. In Gavin’s case, the tumor began in his back, pressing on his lumbar spine and the nerves controlling his left leg, causing excruciating pain and temporary paralysis.

To relieve the pain and prevent further nerve damage, doctors removed the tumor and began chemotherapy. After the chemo, Gavin started radiation therapy as an outpatient. The goal was to be sure the cancer cells in the original tumor were gone. For a while, they were.

“Gavin put cancer in the rearview mirror and went on with his life,” says his mother, Julie. But about two years after treatment, Gavin started waking up with terrible headaches. An MRI confirmed the cancer was back, appearing at the base of his skull, cervical spine and in his ribs. The news was a devastating blow, but he mustered the strength to fight the cancer again. Since then, Gavin says he’s relapsed five or six times—he’s lost count.

“Over the years, we have used standard chemotherapy to treat Gavin, but we have also tried a variety of other innovative options, including experimental therapeutics and immunotherapy,” says J. Allyson Hays, M.D. “What impresses me the most about him and his parents is they continue to choose optimism, generosity and love throughout his treatment. He is an inspiring young man, and we are exploring every avenue possible to give Gavin a fighting chance.”

Photo: Jane Kortright
Children’s Mercy Kansas City, Kansas City, Missouri

To view more photos visit Children’s Hospitals Photo Exhibit.

Sep 16

Tutu Girls

Photo: Allyn DiVito Johns Hopkins All Children’s Hospital; St. Petersburg, Florida

Allyn DiVito; Johns Hopkins All Children’s Hospital; St. Petersburg, Florida

Chloe, Lauren, McKinley and Avalynn met during cancer treatment and quickly became friends forever. Theirs is a friendship that has endured chemotherapy, hundreds of needle sticks, weeks of hospitalization and years of fighting a repulsive disease.

In 2016, with tiny bald heads and frail bodies, they first donned their signature tutus to commemorate National Childhood Cancer Awareness Month. Tutu Tuesday started an annual tradition of returning to the hospital together. On the day of this photo, nurses received hugs from the “tutu girls,” as they have become known. Others reveled in how fast the four had grown.

During several renditions of “Ring Around the Rosie,” Officer Dean was embraced into the dance. “I thought it was so sweet how the girls welcomed this big security guard into their group,” Shawna, Lauren’s mom, says. “We have walked by him and waved hello, but I would have never imagined what a good sport he was to spin around with these four friends.”

To view more photos visit Children’s Hospitals Photo Exhibit.

Sep 09

National Teddy Bear Day

Teddy Bear Clinic

Photo: Juan Pulido Children’s Medical Center DallasPhoto: Juan Pulido
Children’s Medical Center Dallas

Evan is shown an X-ray of his teddy bear by a child life team member at the teddy bear clinic at Children’s Medical Center Dallas. The teddy bear clinic provides an opportunity for pediatric patients to step out of their role as a patient and become a caregiver. Each child is given a teddy bear and, in their caregiver role, names the bear and decides on a diagnosis. The bear then moves through each treatment station: registration, IV placement, X-Ray and surgery.

This therapeutic activity provides a positive healthcare experience. The bear often serves as an outlet for patients to express their feelings or concerns regarding the bear’s care, or their own. Its impact is far-reaching, increasing a child’s confidence and assisting with coping skills.

Aug 19

Medicaid Matters for Kids Mondays - Ben

Speak Now for Kids is celebrating Medicaid’s 54th birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Ben’s mom, Jen. Ben is a Speak Now for Kids Family Advocacy Day alum and current patient at Blank Children’s Hospital.

Ben was diagnosed with a rare disease called Duchenne muscular dystrophy (DMD) at age 3. His muscles are quickly breaking down and will not restore themselves, so every decision we make as a family must include Ben’s medical needs. We think about the small decisions like taking him to the playground—will Ben have enough energy to play, or will he get frustrated because his body won’t cooperate. We want him to have a happy childhood, despite the crippling effects of this terrible disease.

Overnight, our family went from being a normal and healthy family to a special needs family. Since our primary insurance doesn’t cover all of Ben’s needs, we rely on Medicaid to make key services available for him. His drug costs are expensive, and he’ll require multiple medications and medical equipment moving forward. Without good insurance options—like Medicaid or access to our primary insurance with pre-existing conditions—our family would face serious financial effects.

Aug 12

Medicaid Matters for Kids Mondays - Conner

Speak Now for Kids is celebrating Medicaid’s 54th birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Conner’s mom, Katiane. Conner is a Speak Now for Kids Family Advocacy Day alum and current patient at Children’s Specialized Hospital.

Conner was born premature at 25 weeks and experienced many associated conditions, including cerebral palsy, seizures, developmental delays and blindness.

Our lives revolve around accommodating his medical conditions—I devote every minute of each day to caring for Conner and taking him to countless doctor appointments.

We wouldn’t be where we are today without the vital coverage from Medicaid. Our family has private insurance and my husband’s history of military service qualifies us for TRICARE—a health insurance program for military members and their families. But even with these two forms of coverage, Medicaid is essential for Conner to cover his medical appointments and supplies. It helps fill the gap when our private insurance and TRICARE fail to cover certain needs, like many of the home-health services Conner needs.

Medicaid allows Conner to live at home with his family where he belongs. It provided a ramp for Conner to safely get in and out of the house. In the past, we had to carry him to the house in the rain and snow. We now have a home aid to help Conner with basic needs like toileting, bathing and dressing.

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