Confessions of a Rockin mom #6: Fears about health and Down syndrome

So most of the fears I’ve talked about so far have been unwarranted. Today I’m going to address a very real and warranted fear that weighs on me quite a bit. When we received a definitive diagnosis of Trisomy 21 for Everett, it was through his geneticist. She showed us a photo of his chromosomes and there it was…that squiggly little 3rd copy of his 21st chromosome. She also handed us a packet that was essentially a very long list of health concerns that people with DS are predisposed to. Some of these concerns include (but are not limited to): Alzheimer’s disease, Leukemia, gastrointestinal blockage and/or abnormalities, cardiovascular disease, AAI, vision problems, hearing problems, hypothyroidism, ENT issues, obstructive sleep apnea.

With every year that passes, there is a checklist of tests & procedures that we have to monitor for Everett. For instance, every year Everett gets a CBC count and bloodwork to test for pediatric cancer & hypothyroidism. So far his CBC count has been in the normal range, but we’re currently working through some potential thyroid issues. And although Everett seems to have dodged some of the bigger issues (e.g. cardiovascular problems), he has been plagued with constant ENT problems. He has battled too many ear infections to count, has had two rounds of ear tubes, a tonsillectomy, and a sleep study to test for obstructive sleep apnea (he has mild OSA). These are just Everett’s hurdles. I know of a lot of children with DS who don’t have these concerns, but battle others such as gastrointestinal or cardio issues (mad props to my Rockin heart mommas ❤️). So this a real fear for us Rockin moms & dads. It’s not all smiles and rainbows every day. There are real and scary health concerns for our kiddos. But luckily we live in an age where many of these concerns are treatable and subsequently, people with DS are living long, fulfilling lives. This photo was taken right before Everett’s first round of ear tubes. Love my lil fireman ⛑. Despite some of the scary stuff, I wouldn’t change one chromosome in his husky little bod.