Happy Birthday!

Happy Birthday Talynn!

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The Importance of Organization for a Child with a Rare Disease

Having a child with a rare disease is a loving, caring, busy, never ending, supporting, advocating life. For my child, we have a primary care doctor, twelve specialists, four therapists, three nurses, two case managers, and the list continues. For most, managing this can be very difficult which is why organization is extremely important. Here are some of the ways I have learned to manage Talynn's care.

Catching Up

  WE GOT NURSING!  I am trying to catch up from a busy couple of weeks. I have started back teaching and LOVE it! Thankfully,  DMA overruled their decision for Talynn's skilled nursing. Talynn is well taken care of which has allowed me to return to work teaching 4th grade math and science. WE GOT HELP! … Continue reading Catching Up

Services being cut for medically fragile children!

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.