A Little Background

    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 he wasn't.

    One day while changing his diaper I noticed blood in his stool. Later that day, the number of stools increased significantly past what was typical for him. This pattern continued for another day or two so I reached out to his doctor. The office shared that there was a virus going around to keep an eye on him and call back in a few days if things did not seem to be improving. Things continued to get worse for our sweet boy which earned him a trip to the doctor's office. I will spare you the gory details and just say that after lots of bloodwork, stool samples, tests, and a 3-day hospital stay which included an endoscopy and colonoscopy, Connor was diagnosed with Very Early Onset Inflammatory Bowel Disease Ulcerative Colitis (VEO-IBD UC)

    You could imagine the thoughts that swirled through my head. My poor baby! How could this happen? Was it something we did, or didn't do? What do we do now? How can we help him? The doctor tried to reassure us that they had a solid plan and that once Connor had a few doses of the correct medicine we would see an improvement. Armed with the plan and prescriptions we headed home to figure out how life would work with this new diagnosis.

    I had never heard of this autoimmune disease, VEO-IBD UC, and even though everyone tells you not to (for good reason), I went straight to Google. I quickly learned that there was a lot of gray area when it came to the "best course of treatment" and there were a lot of unknowns, but most importantly I learned that although VEO-IBD was life altering, it likely would not be life-ending, and for that I will forever be grateful.

    Those first few weeks were hard. Because the disease is rare, there are not a lot of oral medications that are a good fit for a three year old, and despite what any doctor tries to tell you, it is not easy trying to get them to swallow a pill hidden in apple sauce or pudding! Thanks to the best pharmacist at our local pharmacy, JJ,  (who still to this day treats Connor like he is his own child), we were able to obtain a compounded liquid version of the pills Connor needed to take 3x a day. 

    After a month or two of trying to figure this thing out, we were on our way to moving forward with as much normalcy as possible for Connor and the rest of our kids... or so we thought. That fall we quickly learned that life with a VEO-IBD kid meant life was going to throw us curveballs when we least expected them.