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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

Update August 1st, 2018

Hello #FIERCEWARRIORPRINCESSEDENROSE Tribe! It has been quite a journey thus far and although I have not posted updates in here recently, I have posted on Facebook and hope that you were able to catch up with Eden's Journey.

In the event that you were not able to do so, & just to summarize where we have been, where we currently stand and where we are headed on our journey in the near future, I thought it was time for a new update.😀

Eden has been on respite from surgeries for quite awhile and it has been so wonderful for her development! She is slowly but surely progressing with her speech, doing well with her fine motor and cognitive skills, developing socioemotionally and is so close to walking! She is sassy, spicy and fresh as any typical 2.5 yr old. She is eating well and gaining weight, thriving beautifully thanks to a great team of nurses and therapists, as well as specialists.

That being said, we have surgery #8 officially on the schedule for early September, either the 6th or 13th.🙁 It will basically be a repeat of the surgery she had when she was 10 months old - her very first surgery outside of her trach and G-tube. It is called a CVR with an FOA, which is fancy for a Cranial Vault Reconstruction with a Fronto-Orbital Advancement. In plain terms, this means reshaping her forehead and superior eye sockets (again) in order to protect her eyes and give her brain more space to grow. This also is a step in setting her up to have enough space and room in her head for when we move forward with her big surgery, the mid-face advancement which is the one with the big halo device that I posted about on Facebook not that long ago. We knew that this potentially was coming and just confirmed it today with her craniofacial team (which is her two neurosurgeons and her plastic surgeon).

On August 14th we head back to Boston to see her hand and foot specialist to determine when we will be having surgery on those again, specifically on one finger and one toe, to correct them for improved function and balance. She then has a follow up sleep study at the end of the month to see how she's doing with her sleep apnea.  Hoping for improvement and no oxygen needed at nighttime!

She will be continuing her early intervention therapy through the end of the year at which time we will have to say goodbye to her wonderful team and transition into the school system. But for now we push forward and keep trucking with our goal to just fatten her up prior to surgery and try and get her as mobile and as verbal as possible.

We continue to appreciate all the prayers, love and support from all of you - her tribe - as we go forth on this journey with you all by her and our side. We continue on a quest to provide the best care we can for her, as well as spreading awareness and educating not only on her specific syndrome but on being kind and teaching acceptance  for diversity and differences in people and in the world.

As always we are thankful grateful and blessed.

#FierceWarriorPrincessEdenRose 

#ApertSyndrome

#YOUarehertribe

#Bekindandacceptdifferences

#Educateyourselvesandothers

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