Adley's Craniosynostosis Journey

My husband, Tyler, and I discovered that our beautiful baby girl, Adley suffers from Metopic Craniosynostosis with Trigonocephaly.
What this means is that the Metopic suture that is located at the front of the head fuses prematurely, causing her sweet little skull to have a triangular shape, rather than a round shape. This could later lead to optic pressure with the possibility of vision problems or blindness, developmental delays, and a misshapen facial and head appearance.

We spent many days and nights reading stories and trying to gather as much information as possible so we could figure out how we should move forward in the best possible way for the sake of our daughter...we were given the news she would have to have a surgery called Cranial Vault Reconstruction "CVR" - this surgery IS as scary as it sounds. I was very unsettled about this, so we decided to get a second opinion and we were praying that God would send us to the right hospital, with the right Dr.
When you pray and pray day and night about the safety and health of your child, God hears you.
We were able to find a surgeon , Dr. David Jimenez, in San Antonio, that specializes in the Endoscopic surgery approach and a less invasive treatment of Craniosynostosis. Our little family Traveled to San Antonio, Texas and our sweet Adley had a surgery that will forever change her life. She has begun helmet therapy and this will continue for at least 12-16 months. (We have already got decoration ideas for this* Tyler's idea = a crown because, well, she IS his little princess).

We just received the news insurance will not be convering her procedure and we also have to come out of pocket for a portion of each helmet. We were not prepared for this, but it was something we had to do for the well being of our daughter.

Thank you from the bottom of our hearts for any contributions and/or prayers.


Donations

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  • Abby Bryan 
    • $20 
    • 40 mos
  • Dana Simon 
    • $50 
    • 41 mos
  • Ellie Spiller 
    • $25 
    • 41 mos
  • Stephanie Menard 
    • $50 
    • 41 mos
  • Christy Fontenot 
    • $100 
    • 42 mos
See all

Organizer

Emiley M. Stubbs 
Organizer
Broussard, LA
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