The day we were diagnosed with Bohring-Opitz Syndrome. This day will always have a special place in our hearts. The day we got an answer. The day we joined a family.
Talynn has been denied skilled nursing because Talynn's ADL needs and GI tube feedings can be delegated to a PNA (CNA). This means that Division of Medical Assistance (DMA) believes Talynn can be cared for by someone who cannot give medications nor administer or adjust oxygen. Respiratory is the leading cause of death for children living with Bohring-Opitz Syndrome.