Wednesday, March 24, 2021

Every 21 Days

 A Glimpse into SIOD:

Every 21 days an IV start and labs for Emily's IVIG treatment! 😐She adjusts to this routine, and some IV starts go better than others, but it still is a challenge every time because who enjoys getting poked and prodded all the time year after year?! 💉

Emily has a rare genetic life limiting dwarfism disease called Schimke Immuno- osseous Dysplasia (SIOD) and these treatments are one of many things that help keep her with us. Those suffering from immunodeficiency diseases (low T cell function)-as with #SIOD - having poor IgG levels can benefit from IVIg - a blood product derived from blood donors. Her infusions last 3 hours generally followed by another several hours of IV fluids and are monitored by a home health nurse as any type of blood transfusion can cause the body to react.😷 We appreciate our friends (of which some have been with us nearly 10 years) who help to make each time as smooth as possible. 

We believe in Emily and ALL #SIOD Little Giant Warriors teaching the world medical lessons while inspiring others through their rare disease.