It was at our 19-week ultrasound - the one where you find out the gender, we got the news about Madelyn. They had told us she had spina bifida and hydrocephalus.

When Madelyn (Maddie) was born on February 8th, there were more diagnoses that morning that weren’t detected during any of our ultrasounds. She had an intestinal genetic disorder (imperforate anus defect). The same day she was born she underwent her first of many surgeries - the closure repair of her back. A few days later, another surgery to place her temporary shut in her head as well as a colostomy and about 2 weeks later her permanent VP shunt was placed. We weren’t allowed to hold her for a couple weeks let alone even touch her. 32 days later in the NICU she was able to go home. In 2018 we were told Madelyn has no hearing in her right ear.

Nothing slows Madelyn down though. She is a total rockstar! She has done speech and occupational therapy. She continues to do physical therapy at Akron Children’s. While Madelyn has made great strides in therapy, she still requires a colostomy bag and catheterizations multiple times a day. The ongoing care she needs often requires assistance from her pediatrician, specialty providers and urgent care visits.

4 years later, 10 surgeries, countless hospital stays and visits - Madelyn is such an amazing, independent, big hearted little girl! She also started preschool last fall (2020), she will do 1 more year of preschool this year (2021)! Each day she asks if it’s time to go see her teacher (who she LOVES!) and classmates. Big brother Logan and her love playing soccer together, playing outside and getting on each other’s nerves! We are beyond blessed to have such a supportive team on our side and so many people who love our sweet Madelyn!