Over five months ago, I wrote about Sweet Lorelei, a baby born with spina bifida, and the challenges she has faced since her birth. At just three months old, Lorelei had already undergone multiple surgeries and medical procedures, including spinal surgery at four days old, a battle with E. coli and meningitis, and the installation of drains and shunts to relieve fluid and swelling in her brain. Despite the hardships, Lorelei’s parents, Adam and Rachel Easterly, remained hopeful and determined to help their daughter overcome the obstacles ahead.
Now, at eight months old, Lorelei is thriving. Rachel reached out recently to update me on her daughter’s progress, and it’s nothing short of remarkable. As October marks Spina Bifida Awareness Month, Rachel reflects on their journey and the lessons they continue to learn every day. Lorelei’s condition, while complicated by the addition of acquired hydrocephalus and craniosynostosis of the skull, has not stopped her from making incredible strides.
The last time Rachel and I spoke, Lorelei was adjusting to helmet therapy, an essential part of her treatment. At just three months old, wearing the helmet for 23 hours a day was no easy feat, especially in the summer heat. But Lorelei, ever the trooper, adapted to the routine. According to her surgeon, the progress she made in just three months was equivalent to what they would expect after 12 months, a hopeful sign that Lorelei may not need additional surgery for her craniosynostosis.
In addition to her helmet therapy, Lorelei has been receiving early childhood intervention therapy, with numerous outpatient appointments at Children’s of Alabama. Rachel shared that Lorelei has been performing exceptionally well across the board. In July, Lorelei had a successful urodynamic test, which showed that her bladder and bowel functions were functioning well—something that is critical for children with spina bifida. The family also received encouraging news in September after a follow-up sleep study and EEG. Lorelei was no longer dependent on oxygen at night for central sleep apnea, and the EEG revealed that she might soon be able to taper off her seizure medication.
Perhaps the most exciting milestone of all, however, is Lorelei’s physical progress. At eight months old, she is sitting up on her own, learning to crawl, and weighing in at over 20 pounds—a far cry from the tiny three-month-old who had struggled to gain weight after numerous surgeries and infections. Her doctors are thrilled with her progress, and the Easterlys continue to be grateful for their daughter’s resilience and her sweet, joyful spirit.
Despite these victories, there are still concerns. Lorelei’s shunt, which helps to regulate fluid in her brain, remains a critical part of her treatment. Shunt failure is a risk for infants, and the family prays each day that it continues to hold up. But Rachel and Adam are optimistic and take things one day at a time, knowing that Lorelei is a fighter and that, with the support of her family and medical team, she will continue to thrive.
In a heartwarming update, Rachel shared that after months of healing at home, Lorelei had the chance to join her parents for a special trip. The family celebrated their 8th wedding anniversary, and Lorelei got to see the ocean for the first time—a milestone that holds so much meaning for this resilient little girl and her loving parents.
It’s moments like these, the ones filled with hope and joy, that remind us of the strength and courage of families like Lorelei’s. Adam and Rachel Easterly’s unwavering love and dedication to their daughter’s well-being is inspiring, and I couldn’t be more thrilled to hear about Lorelei’s progress.
Let’s all take a moment to send our love and support to this incredible family. Please leave a comment for Adam and Rachel and let Sweet Lorelei know we’re all rooting for her!
