Blessed With Chaos

A mother sharing daily experiences, stories, information, and lessons learned through caring for a child diagnosed with a rare genetic condition, Rett Syndrome.

  • ENT Appointment 1/28/25

    Stetsyn had an ENT (ear, nose and throat specialist) appointment last week on January 28th at Riliey. This appointment was scheduled to help rule out any possible causes of Stetsyn’s frequent gagging, spitting up and vomiting. The appointment went well, we really liked our specialist and she was great with Stetsyn! We were prepared with…

  • Swallow Study

    Stetsyn had a swallow study (videofluroscopic swallow study- VFSS) on December 31st, 2024 at Riley and it went great! The reason for this study is because of Stetsyn’s frequent vomiting and gagging causing vomiting. This is a big concern for her since she is already small, and is continuing to struggle to gain weight since…

  • Welcome!

    Hello, and welcome to Blessed With Chaos blog! I chose the name “Blessed With Chaos” because of how much the literal meaning resonates with me. With my daughter Stetsyn being diagnosed with Rett Syndrome, a rare genetic neurological disorder, we have experienced a LOT of chaos in our life lately. Though life has been stressful,…