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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 more

Latest journal entry

We made it! June 2017

Finally! We made it to the respite. Eden underwent her sixth surgery on April 24th at Boston Children's Hospital to have the remaining fingers and toes separated and performed like a rock star as always! She rocked her casts for three weeks and has been progressing wonderfully ever since. She's developing cognitively, socially, emotionally and with her mobility skills as well. Her personality is really emerging and it's been so fun to see her thrive and grow on so many levels. She's now in the 68th weight percentile!!!  We continue to thank everyone and feel blessed for all the love and support they've shown to her.

Our summer will be filled with lots of fun and enjoyment as she is tolerating the outdoors and environment much better this summer so far. It's been fun to experience some things as a family that we hadn't really been able to do before.  Simple things such as the four of us going out to a restaurant for dinner together and Eden going to the park with Tommy and swinging on the swings. We are blessed with wonderful nurses and excellent therapists who care for her like she us their own child. We've got some doctors appointments to follow up with through the summer as per usual and are pushing forward with her speaking valve training, feeding therapy, getting her orthotics and a stander to promote weight bearing and get her standing and eventually walking.

We will be heading to the beach this summer, it will be our first family vacation together and are really looking forward to Eden joining our family's tradition of so many years.

We will keep you updated with plenty of pictures throughout the summer!  Hopefully we will get to see you and spend some time with you all this summer and as always we thank you for your love, kindness and support throughout her journey and we welcome any opportunity for education and spreading awareness. Much love, peace and happiness to everyone.

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