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

       I’ve always been a laid back, glass half full type of person who would just go with the flow. Prior to having kids, I wasn’t really a crier. I was taught to take what I was given in life and make the best of it, to appreciate the little things in life, and to enjoy every day because life’s too short. Jason and I try to instill those same values in our kids.      After Connor was first diagnosed, I was focusing so hard on trying to remember those little parts about myself and living up to them that I never saw the anxiety coming. As time went on, my ability to cope with the situation got worse, but I didn’t even realize it. My once focused and organized self felt like I had 30 tabs open in my head, and if I closed one five more popped open. I couldn’t keep any of our schedules straight or remember what I needed to get done in a day. I had a really short fuse and would get frustrated easily. I was withdrawn and not initiating conversations. Then t...

The old adage “it takes a village” has never rang more true for Jason and me as it has the past two years. Neither of us are one to ask for help. We don’t ever want to put someone else out, but recently we’ve really had to lean on our family and friends to survive. It’s not lost on us how fortunate we are to have the size village that we do.      First, there is our parents. We would literally fall apart if it weren’t for Grandma, Grandpa, Grammie, and Papa Randog. Even on days where things are going well, they are always there to pick up the slack, babysit, give rides, fold laundry, do anything possible to lighten the load – not to mention my mom and mother-in-law keeping the ship afloat when we end up in the hospital, no questions asked.      Then there are our siblings/extended family – always checking in to see if we need anything. My grandma is the ringleader of the prayer group. Jason’s cousin Heather lives in King of Prussia and is always offering up...

    As if the winter months in NEPA weren’t dark and dreary enough, we continued to receive bad news about Connor’s reaction to the new medication. After onboarding doses via infusion of the new medicine, the plan was to schedule them once a month. That lasted exactly one month before we got the call that Connor’s body wasn’t absorbing enough of the new medication, and that we needed to bring him back to CHOP for infusions every other week. The days in between these infusions were a literal rollercoaster. Days 1 and 2 post infusion, he seemed happy and somewhat healthy, but that quickly went downhill – increased frequency with blood, no appetite, no energy – I was a constant ball of nerves.      On March 14 th Jason and I took Connor back to CHOP for his next infusion. At this point, the poor kid was stooling 10-15x a day with loose, bloody stool. His coloring was terrible. He was refusing to eat and drink.   On top of everything else, he was gettin...

    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 ...