The last three weeks have sort of been a haze of therapy and doctor appointments. Having a full calendar along with all the dreary weather hasn't made April feel very "springy." I am looking forward to nice sunny warm weather so Ethan and I can get back outside everyday even if it is just for a 30 minute walk/stroller ride. We are also continuing to wait to find out what is going to happen with our insurance coverage of the formula. We are hoping to have more answer within the next 60 days. The supplier has up to 30 days to bill the insurance and then insurance has up to 60 days to reimburse them, so we won't know until that happens if the insurance is actually covering the formula and if so, at what rate. Let's just say it is a BIG headache! Monday, April 8th Ethan's vision therapist came to our house. Tuesday, April 9th Ethan's hearing therapist came to our house. Wednesday, April 10th Ethan saw the pediatric surgeon at Carle. We were ...
Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our family's journey.