Evie's 2-year follow up with Cardiology was today. She had open heart surgery at 5 months old to repair an ASD and VSD, and since then, her heart has been strong, and her pulmonary hypertension has resolved. I celebrate her heartiversary every year to remind us of how far she has come. Taking a 3-year old for an afternoon of an EKG, Echo, and Cardiology follow up takes a lot of energy. Especially when said 3-year-old does not want anyone to touch her. "Evie, these are stickers!" Evie did not think that EKG leads and stickers were fun at all. She would not stop wailing until we took them off. The Echocardiogram part was a bust. The technician gave up when Evie start flailing around, even though I had her arms in a lock and my legs around her legs, while my husband tried to hold the iPad and hold her legs as well. Evie's look of blame when she twisted around to ask me for help was an arrow through my mama heart. We finally got to see our fave cardiologi
While sharing our journey with Down Syndrome, we want to help other parents with our experiences, as well as spread awareness about what it means to have Down Syndrome (spoiler: it means great things!).