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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[...]

Latest journal entry

February 2017 Update

Hello friends and family,

Eden is doing well despite a recent scare resulting in an emergency room trip due to her not being able to breathe and us having to use an Ambu bag on her trach to supply her with oxygen. That being said, she is currently in surgery with her ENT having her trach scoped to look for possible scar tissue or granulation tissue. While she is under anesthesia, she is having the Nissen procedure done by her GI specialist, Dr. Pandya (who also happens to be one of the doctors who recently separated the conjoined twins on a case in Westchester). The Nissen procedure will hopefully reduce her GERD (reflux), allow us to make gains in the future in regards to her feeding by mouth instead of the G-tube, reduce aspiration pneumonia risk and make progress with speech and communication. 

Just a few minutes ago, we handed her off to the surgeons once again (for the 5th time in 14 months of her short but sweet life) and are waiting patiently in the PICU at Maria Fareri Children's Hospital for her to be finished and to come back to us as her happy, healthy self with a little Improvement :-)  

Upcoming procedure includes her second syndactyly release on April 24th at Boston Children's Hospital with the hand surgeons to finish separating her fingers and toes. It is hoped that she will have a nice long respite from hospitals and surgeries after that, until her midface surgery.  That's a whole other beast...to be tackled at another time. 

We continue to thank you all for the love and support, prayers and well wishes and for following her journey and spreading awareness and kindness.  Be good to one another XO

The Modugnos