Meet Raegan! She has been diagnosed with Metopic Craniosynostosis and laryngeal cleft.

Raegan was born with both metopic Craniosynostosis and a type 1 laryngeal cleft. She had a lot of trouble with bottle feeding as a newborn and was hospitalized for failure to thrive where we realized that she was aspirating her formula. This ultimately led to her receiving an NG feeding tube and then a g-tube a few months later. At 9 months old, she had cranial vault reconstruction surgery to fix her skull. Craniosynostosis is when the sutures of the skull fuse too early which results in an abnormally shaped head. Because the suture/s are fused, the brain is not able to grow and develop as it should and can have profound effects on the child's development. Surgery is performed to break the skull apart to allow the brain to grow as needed. 

Her mom says, Raegan is the strongest little girl I've ever known. She has been through so much, but she always has a smile on her face. She's funny and sassy; and she knows it. 

She loves her "Baby" (waffle fabric type baby blanket) and she takes it everywhere. She loves to sing and dance. Her two favorite songs are "Row Row your Boat" and "Baby Shark". She loves to climb, jump, and play but she also loves to snuggle and have quiet time together. 

Raegan used some of her favorite colors to draw her masterpiece! The zig zag lines represents the zig zag scar that forms after cranial vault reconstruction surgery for craniosynostosis. This is done intentionally to help hide the scar in the hairline as they grow older, but it is a beautiful reminder of the ups and downs that Raegan has faced in her life and proves that she is a brave cranio warrior. 

Her mom wanted to share, "We just celebrated 1 year post-op this September!!"