Our Journey

Before Braylee was born we had no idea  there was anything wrong.  After she was born her pediatricians ran tests including a CT scan and blood tests, and with research they determined that it was Apert Syndrome.  They referred us to Primary Children's Hospital in Salt Lake City, UT where we learned that she is going to need multiple surgeries.

When she was only 3 weeks old we had her first visit to Primary Children's.  We met with the cranial facial team which consists of an E.N.T (ear, nose, throat),Speech Therapist, Plastic Surgeon,  Orthodontics, and Genetics.  They informed us that she is going to need cranial surgery when she is around 6 months old.  They need to open up her sutures so that her  brain can grow correctly.  They will also put tubes in her ears at this time since children with cleft palates are more likely to have ear infections.  Her cleft palate will be fixed around 9-12 months old.  

She gets afro hair everytime she gets out of the bath.  We will see if she keeps the curls!

Rocking the pony at 5 weeks old!!!