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Raymond’s Story (In Mom’s Words)

My name is Alex Gaudlap. Also known as Raymond’s mom. Our journey with Nemours Children’s Health started in the fall of 2017 when we relocated back to New Jersey from Camp Lejeune, North Carolina due to Raymond not hitting developmental milestones appropriately. The doctors down South assured me Raymond was fine, but my motherly instinct told me he wasn’t. From the moment we stepped foot into Nemours Children’s, I felt like our concerns were listened to. Raymond’s first appointment at Nemours was with a neurologist in the Deptford location. Since we were new patients and basically starting from the beginning with tests, she ordered a routine EEG. We never would have thought that his first test would give us answers, but it did. Raymond was diagnosed with a rare form of epilepsy; that gave us some indication to why he had a global developmental delay. After receiving the epilepsy diagnosis, […]

Journey’s Microtia Story – Mother’s Words

Emily Baez remembers being in the delivery room when she noticed that something was different about her newborn daughter’s ear. “You count toes, you count fingers, but you don’t think for a second to check any other body part… especially an ear,” she says.   Microtia is a rare birth defect in which the external ear is not completely developed. It affects about one in every 5,000-7,000 babies born annually. “When she was born, I didn’t know anything about it, I had never heard of microtia, so I started with social media first,” she says. This is when Emily became involved in The Ear Community online, searching hashtags and connecting with other affected families. “It actually helped make my grieving process a lot better.” After struggling to identify a health care provider that accepted their insurance, Emily found Nemours Children’s and instantly knew she was in the right place to […]

Nutrition in Sickle Cell Disease

Keeping your child healthy and strong. Children with sickle cell disease (SCD) have lower levels of certain vitamins, minerals, proteins and other nutrients. That’s because their bodies turn over red blood cells so fast that nutrients are broken down faster than normal. When the body doesn’t get the nutrients it needs, it leads to malnourishment, anemia (low iron), frequent infections, poor growth and development, and other complications. At the Nemours Children’s Center for Cancer and Blood Disorders, our team incorporates nutrition into the overall treatment plan for kids with SCD. We know that good nutrition helps to support growth, restore energy, improve immunity and strengthen muscles and bones. Good nutrition can also reduce pain crisis and the side effects of certain treatments. This can help decrease the number of hospital visits and improve overall health as your child grows. Essential Vitamins and Minerals for SCD A child with SCD takes […]

Esperanza de un Guerrero – La Historia de Sebastian

En mayo de 2022, Sebastián llego triste de la escuela. Estaba yo preocupada por él. Pensé que tal vez alguien era un bully, pero me aseguró que estaba inusualmente cansado. Al día siguiente era lo mismo, y tenía fiebre, así que lo llevé al médico que le diagnosticó una infección de estómago y le recetó antibióticos. Mejoró, pero no pasó mucho tiempo antes de que regresaran los mismos síntomas. Fuimos a otro médico que dijo que era lo mismo y nos recetó aún más antibióticos. Me pregunté cómo podría ser una infección del estómago si no tenía síntomas gastrointestinales, pero seguí lo que dijo el médico. Pero luego se agregó la respiración rápida a sus síntomas y supe que algo más estaba pasando, así que esta vez lo llevé al hospital. La respiración era tan rápida que me asustó. Pensaron que era bronquiolitis y prescribieron un tratamiento con nebulizador. Cuando […]

Hope of a Warrior – Sebastian’s Story

To read this in Spanish, click here! One day in May of 2022, Sebastian came home sad after school, causing me to worry about his unusual behavior as he is a very happy child. I asked Sebastian if something was wrong and if he was being bullied at school. He assured me he was just unusually exhausted. The following day, Sebastian was in the same down mood, but had a fever this time. I took Sebastian quickly to our local doctor, where he was diagnosed with a stomach bug and prescribed antibiotics. He eventually felt better, but not much time passed before the same symptoms returned. We went to another doctor who gave him the same diagnosis and prescribed more antibiotics. I wondered how it could be a stomach bug if he had no GI symptoms, but I followed the doctor’s advice. Rapid breathing was later added to Sebastian’s symptoms, […]

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 […]

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 […]

Myah the Fighter

Myah has been a fighter since the day she was born. If two parents each have their own form of skeletal dysplasia, it is possible for their child to inherit both types. This was the case for lovely Myah who carries a diagnosis of both achondroplasia and Kniest dysplasia. Given her complex medical needs, at 5 months of age her parents transferred her inpatient care across the country to Delaware to receive guidance from the Nemours skeletal dysplasia team.  She required coordinated multidisciplinary care from multiple specialists over her months-long hospital stay, which was possible given the specialized expertise of Nemours providers. Nemours offers care to individuals with skeletal dysplasia until the age of 35, so during Myah’s admission, her parents Brian and Alana also received multidisciplinary evaluations with the Nemours skeletal dysplasia team.  We cannot wait to see what the future holds for Myah and her family, and will be here to support them along the […]

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. […]

Page 21 of 28

Page 21 of 28

Page 21 of 28