When Lex was just a baby, his pediatrician noticed something was off about the shape of his head, leading to a diagnosis of craniosynostosis, a condition where the skull’s sutures fuse prematurely. Craniosynostosis is when one or more seams between bones in a child’s skull close too soon. When this happens, the skull can’t grow properly and develops a different shape.
Despite facing multiple surgeries and challenges, Lex and his family have found unwavering support and care at Nemours Children’s Hospital, Florida. Through it all, Lex has shown incredible resilience.
“His pediatrician noticed that his head shape was not normal and immediately referred us to Nemours,” shares Lex’s mother, Courtney. At Nemours Children’s the medical team conducted a series of tests and scans. In addition to the craniosynostosis, Lex was also found to have elevated cerebrospinal fluid (CSF) pressure, pituitary gland shrinkage, and a host of symptoms, including severe headaches and nausea. The diagnosis was overwhelming, but the family found expertise and support in the Nemours team. Throughout the years, Lex underwent a variety of surgeries and treatments for his diagnosis.
As Lex grew older, his symptoms worsened. “He began experiencing more frequent and intense headaches, accompanied by nausea, vomiting, and an unbalanced gait,” shares Courtney. The expert team at Nemours recommended a second surgery. Dr. Olavarria and Dr. Kellogg, key members of Lex’s care team, were always there to provide reassurance and expert guidance. “Nemours has been a life saver,” Courtney shares. “All the doctors and nursing staff were always so kind and compassionate. They treat us like family and make us feel comfortable.”
Lex’s most recent surgery for cranial reconstruction was a testament to the hospital’s exceptional care. His recovery process has been nothing short of miraculous. “In just 3 weeks post-op, Lex was released to play baseball,” says Courtney. “It’s been amazing to see how quickly he’s bounced back.” Dr. Kellogg and Dr. Olavarria’s attentiveness and care have been instrumental in Lex’s recovery. “They have been very attentive to everything we’ve needed. We really appreciate them,” Courtney adds.
Now 8 years old, Lex’s family remains committed to his care at Nemours. “Lex will always be a part of the Neuro/Plastics family at Nemours,” Courtney says. Regular follow-up appointments and continued care are essential for Lex’s ongoing health, and the family has no doubt that Nemours is the place where he will receive the best possible treatment. The hospital’s dedication to patient care extends beyond the walls of the operating room, creating a supportive environment for Lex and his family. “We will never leave Nemours,” says Courtney.
Through trials and triumphs, Lex’s mom has gathered wisdom to share, offering comfort and guidance to others walking a similar path. “We know this may be scary, but rest assured you are in good hands,” she says. “The Nemours staff, doctors, nurses, even chaplain and cafeteria folks make you feel comfortable.”
“Always trust in your doctors because they are the best,” she insists. Courtney encourages families to lean on the expertise of their medical team. “Be patient as the process is long and pray!” she says, “It is worth it!”
“Nemours is the best,” Courtney concludes. Her advice is a reminder that you are not alone and that with the right support, you can overcome even the most daunting of challenges.
