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Epilepsy Awareness Month- Chloe M’s Story (Mother’s Words)

On May 30th, 2021, Chloe was having a typical night playing with her toys. She was smiling and giggling like always, and suddenly she stopped her energetic pacing between toys and randomly fell to the floor. She became limp and stopped breathing. Her lips and feet turned purple right before she became conscious again. No one knew why this happened because she’d never experienced anything like it before. An ambulance arrived, and Chloe was taken to Nemours, where she was diagnosed with epilepsy following a second episode that occurred in the hospital. Despite a quick diagnosis, there was still a long road ahead to gain seizure control. Chloe’s days went from cheerful playing and adventures to constant seizures, which made her feel sick and exhausted. She was unmotivated to do anything. Her toys were barely touched, and she couldn’t sleep through the night without multiple seizures. Eating food became a […]

Palliative Care Month – Molly’s Story (Mother’s Words)

On her first day of kindergarten on September 20, 2010, Molly Katherine Dunne was a seemingly healthy girl until she collapsed as she arrived at school. She was taken to Nemours by ambulance. After some testing, she went home with plans to follow up on an out-patient basis. However, the next night her condition worsened so we returned to Nemours where she was admitted. After many tests, Molly was diagnosed with Pulmonary Hypertension. Things happened quickly and we knew little of what this diagnosis meant. Molly underwent a cardiac catheterization to help determine a treatment plan and next steps. While in the catheterization lab, she had some complications followed by a cardiac arrest. She was revived but was not stable so she was placed on ECMO also known as heart-lung bypass. Over the next few days, attempts to wean from ECMO were unsuccessful. Molly was transferred to another children’s hospital […]

Little One’s Got the Sniffles? Watch for Breathing Trouble

You’ve probably heard about respiratory syncytial virus or RSV a lot lately. That’s because cases of this illness have increased since last year. RSV mainly causes cold symptoms, and most people who get it get better on their own. But when babies or toddlers get RSV, it can turn into something more serious called bronchiolitis. Bronchiolitis causes the lung’s tiny airways (bronchioles) to swell and fill with mucus. This makes it hard to breathe. Bronchiolitis usually gets better on its own, but sometimes kids need treatment in the hospital. With the winter season upon us, it’s good to know what to look for — and when to get help — the next time your child comes down with a nasty cold. Why are RSV cases on the rise?  Doctors aren’t exactly sure why, but it may be because fewer people are wearing masks now. RSV is a common childhood illness, […]

Microtia Awareness Day — Axel’s Story

You’d never know it today, but 10-year-old Axel was born with an absent right ear, which was noticed at birth. His condition is defined as microtia, and refers to a missing or an abnormal ear, and can involve one or both ears. Newborn hearing tests revealed that, besides missing his outer ear, Axel did not have a normal hearing ability on the right side. Fortunately, Axel didn’t have any other medical conditions that required early treatment. As he grew up, it became increasingly hard to deal with the appearance of having a missing ear. “Sometimes kids at school would bully him for not having a full ear,” says his mother, Juana. “It made him feel like he wasn’t a normal kid.” In addition to being seen by Nemours Children’s Audiology and Otolaryngology teams, Axel was referred to Plastic Surgery to discuss options for treating his ear difference. A staged ear […]

Nationals or Bust — Edris’s Story (In His Own Words)

Gymnastics is my LIFE! I didn’t realize how much gymnastics meant to me until it was taken away. I’ve been competing since I was 7 years old and played many sports until my mother noticed me doing backflips around the house and signed me up for gymnastics. From my first class, I knew gymnastics was the sport for me. I competed at every level, gaining new skills every year. I stayed healthy for 10 years, until November 3, 2020, when I thought my gymnastics career was over. On the floor, I did a layout of a skill I had mastered years ago, but when I landed, I dislocated my knee.  Once the swelling subsided, I was told that I needed medial patellofemoral ligament and tibial tubercle osteotomy surgery. I was scheduled for surgery six weeks later, but contracted COVID and pushed the surgery back. Once I had surgery, I started […]

Getting back to Champion Level Caliber — Ryan’s Story

Ryan has been a gymnast for 10 years, growing into a top competitor on her team. When she suffered a dislocated shoulder and instability injury, she met Dr. Alvin Su, sports orthopedic surgeon at Nemours Children’s Health, Deptford. She had instability in both of her shoulders, and the right shoulder bothered her more in the beginning. Dr. Su first fixed Ryan’s right shoulder with surgery in 2019. Ryan completed physical therapy and was able to return to gymnastics. To help Ryan reach her full potential, Dr. Su subsequently fixed her left shoulder in 2021. Over time, Dr. Su helped her reach champion-level caliber once again to bring home the gold. Ryan completed her physical therapy sessions and before being released, her therapist let her go back into the gym. She’s doing great now; both shoulders are healed, and she is a world, state, and regional champ! Ryan loves school, cooking, […]

Six Steps to a Safe Halloween Night

October is here and kids are brewing up their Halloween costumes and getting excited for their spooky night out. Whether your ghosts, superheroes, or fairies are trick-or-treating by your side or going door to door with friends, keep safety in mind so things go smoothly. Always follow your area’s COVID-19 guidelines. Kids should stay home if they’re sick with COVID-19 or any other illness. Here’s six ways to help make the night a great one for kids of all ages. Step 1: Keep Safety in Mind When Choosing Costumes Trips and falls are a main safety concern on Halloween. Kids should wear costumes that are easy to move around in and that don’t obstruct their vision or impede walking or breathing. Tips to follow: Masks should fit correctly over the eyes so your child can see clearly. It’s best to avoid full facial masks, but if your child wears one, make […]

10 Years Later — Max’s Story

Max Paul turned 18 in July this year. But several months after he was born at Arnold Palmer Hospital for Children in 2004, he vomited blood and went to the emergency room there. Max was admitted, but they didn’t have a bed for him, so he and his mom spent the night in the ER at Arnold Palmer, sleeping on a stretcher. Mom Lori remembers a geneticist from Nemours was added to Max’s care team, and Max was diagnosed with cystic fibrosis. He joined the CF clinic at Nemours.  Around that time, mom remembered Nemours was applying to build the hospital in Orlando, and so when the question would arise, “Does Central Florida need another children’s hospital?,” the answer in her mind was a resounding, “Yes!”   “We were at the right place, at the right time to become part of Nemours,” said Lori.  When it came time for the groundbreaking ceremony […]

Worth the Wait — Edwin’s Story

Edwin was born with Pierre Robin sequence, a rare and serious condition where a baby’s jaw is so small that the tongue blocks the airway.  Because of the complexity of his case, Edwin was monitored closely in the NICU until our craniofacial airway team, including a plastic surgeon and otolaryngologist, were able to open his airway by bringing his jaw forward. “My initial goal, after making sure Edwin was safe, was to reassure his parents that everything was going to be okay. We had many discussions about the options and decided that mandibular distraction—bringing the jaw forward slowly over time—was the right option for Edwin and his family,” explains Dr. Brian Kellogg, division chief of plastic surgery, Nemours Children’s Hospital, Florida. “Using a customized computer model, I was able to carefully plan Edwin’s surgery and the movements of his jaw bone.”  Because Edwin had been in the NICU since the day he was […]

The Primmer Family Story

Karalyn first came to Nemours after she was suffering from some abdominal pain, which led to a visit at an ER in their hometown of Titusville. Something didn’t satisfy her parents about that visit, and they were concerned that something else was wrong.   They immediately sought help at Nemours Children’s Hospital, Florida. There, an ultrasound found a tumor associated with a genetic disease called Von Hippel-Lindau (VHL) that was in her adrenal gland. In 2020, the 8-year-old she had an 8-hour surgery and stayed for a few days afterward for observation.   It turned out Karalyn was the first one in her family to be diagnosed with VHL. Later, younger brother Westin had a similar issue when he was 6, and also required surgery with the same surgeon at Nemours. Then, dad got a diagnosis, but had to have an adult surgeon at a hospital for adults, lamented mom. […]

Tips for Getting the Most Out of School Breakfast & Lunch

As back to school mode goes into full swing, purchasing school meals is a great way to help you save time and money. It’s also a great way for kids to get the nutrients they need. According to the National School Breakfast and Lunch Program website, about 60 percent of schoolchildren in the U.S. receive school-provided meals each day through these programs. (1) With the majority of kids buying school meals, let’s talk more about what goes into them followed by specific tips and tricks you can use to promote healthy eating at school. About School Meals School meals have to meet specific nutritional guidelines. Both breakfast and lunch are required to have fruits and/or vegetables and one cup of fat-free or 1% milk. Half of grains provided must be whole grains, and there are limits on certain nutrients, such as sodium (salt). Lunches must include a protein source (called […]

Jay on his wakeboard

In the Wake of Injury, A National Champion Triumphs — Jay’s Story

Jay loves wakeboarding—in fact, he’s a wakeboarding national champion! But when he fractured his right femur in June 2020 during a wakeboarding accident, he was brought emergently to Nemours Children’s Hospital, Florida to see Dr. Zachary Stinson, who specializes in pediatric orthopedic trauma and sports medicine surgery. Jay had his femur surgically repaired with a metal rod, and he began the gradual journey to walking, running, and wakeboarding again.  Following his surgery, Jay was determined every single day in therapy, and he was cleared to start running just months following surgery, and eventually to full wakeboarding activities by six months!  Jay had the metal rod removed 18 months following his initial surgery, and he was completely cleared by Dr. Stinson a few weeks later.   Jay’s mom Ashley credits Nemours doctors, physical therapists, and nurses for being comforting not only to their patients, but also patient families. “The nurses and doctors explained treatments to Jay and me,” she said. “They would also […]

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