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Eden's Garden

Eden Rose Modugno was born on December 4th, 2015 with a very rare genetic condition called Apert syndrome which is characterized by the bony fusion of certain skull bones[...] read about page

Latest journal entry

September Update

Eden had an eventful summer filled with doctor appointments and checkups. Fortunately, she was cleared by cardiology, her kidneys are clear, and the EEG revealed no seizure activity!!! 

Upcoming appointments include an MRI of the brain under sedation in order to view the brain stem for possible causes of the central sleep apnea, as well as to view the brain for a checkup prior to her first cranial vault surgery on October 10th in Westchester at Maria Ferari children's hospital.   It will be an FOA surgery- Frontal Orbital Advancement to release the fused cranial sutures and bring the supraorbital bones forward for increased protection of her eyes.  Recovery time is approximately 1 week in the hospital if no complications, with the first 2 days post op in the PICU.  

5 weeks later, on November 14th, she is scheduled to have her first syndactyly release surgery to release some of the fused fingers and toes.  This surgery will take place at Boston Children's Hospital with a hand specialist who has significant experience with Apert Syndrome.  

In addition, she will be having a follow up modified barium swallow study to ensure she is not at increased risk of aspiration. She will also be having a follow up sleep study.

Currently, she is on Maria Ferari Children's Hospital due to mild pneumonia.  Prayers for quick healing and future success with surgeries are welcomed.  She has a busy fall upon her and we appreciate everyone's continued love and support.

Please remember, people may be fighting battles you know nothing about, and everyone deserves love, respect, acceptance and kindness because we are all in this together.