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.

  • 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,…