It's Complicated: A Mom's Diary of Life with a VEO-IBD Kid

    Hi, I'm Connor's mom, aka Danielle. My husband Jason and I are parents to 4 kids -- Sadie (11) Cole (9), Cooper (6), and Connor (5) -- and two fur babies, our dogs Jack and Ruby.     Jason and I joke that Connor has been giving us heart failure since conception. For those of you who don't know, I had my tubes tied after I gave birth to Cooper, and 9 months later found out that I was pregnant with our little miracle baby, Connor. One shocking life development wasn't enough for our caboose. After three years of smooth-ish sailing, Connor gave us another unexpected surprise, except this one wasn't as pleasant.      In May of 2021 things were low key for our family. A year into the COVID-19 Pandemic, we spent most days after work and on weekends at home enjoying the craziness of life with four kids. Our youngest, Connor, was a typical three year old trying to keep up with his older brothers and sister. He was healthy and happy (as far as we knew) until...

    Fall 2021 came and Connor was symptomatic again, but this time is was the other extreme. I began leaving his doctor’s appointments feeling as if something was off. Connor was due for another scope, but this particular hospital kept pushing it off saying that “elective procedures were on hold”. My gut told me it was time to get a second opinion. We were extremely fortunate to get an appointment with a doctor at Children’s Hospital of Philadelphia who not only specializes in VEO-IBD, but is also the lead of a research study centered on VEO-IBD. After one appointment with this doctor and her Fellow, Jason and I left feeling a sense of calm that Connor was in the best hands possible, and we had a solid plan to help him lead a normal life.     After a few appointments and an endoscopy and colonoscopy later, Connor was doing well on his daily oral medications and back to being his wild and crazy little self. It felt good to see him playing with his siblings a...

          July of 2022 brought with it a lot of summer fun. From family gatherings, to pool days, and visits from out of town friends, our weekends were jam packed, but it was all good things happening. One particular weekend in mid-July all four kids were having a sleepover at Grammie and Papa Randog’s house (Jason’s parents) because some of my friends from college were coming into town for an overnight visit. After a few hours, and in the middle of a game of corn-hole, my mother-in-law sent us a picture of a stool that Connor had taken at their house, and it was very concerning. She reassured us that he was acting normal and having fun so, I tried to put it out of my head and enjoy spending time with our friends, but I couldn’t shake the feeling that Connor was taking a turn for the worse.           That following week my fears came true. Connor was not getting any better – if anything, he was ...