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

Have you ever felt like the universe was testing your limits? That’s where I’m at and have been since the start of 2025. After the loss of a few loved ones and two hospital stays with Connor I thought maybe we’d been through enough for a little while. I of course never said that out loud though. We are all familiar with my constant fear of “the other shoe dropping”. So I’ve just been holding my breath and hoping for the best. Deep down a very large part of me knew that Connor’s symptoms post RSV weren’t getting better like we’d hoped, but ever the serial optimist, I held out hope. The air was slowly being let out of my optimistic bubble beginning Thursday of last week. Connor woke up crying, which he rarely does, saying he was in a lot of pain. That coupled with increased bleeding earned us a virtual appointment with his GI team. Because Connor was still hydrating at home and not showing signs of dehydration, the plan was to schedule an endoscopy/colonoscopy for this week and see what ...

Do you ever feel like you’re trying to climb out of the deep end of a pool and someone just keeps throwing bricks at you? That’s how I’ve been feeling lately – what else could go wrong? It’s a question I typically don’t like to voice because I’m a little superstitious; so to me, verbalizing that statement is like opening Pandora’s Box. It appears the universe doesn’t need to hear me say it though, because 2024 ended on a downward slope and 2025 hasn’t shown any sight of an upswing. On December 30 th , I lost one of the greatest loves of my life – my sweet Grandpa got his angel wings less than two months shy of his 89 th birthday. I knew it was only a matter of time before I’d have to say goodbye to him, but a part of me always hoped he’d defy the odds and live forever. It’ll take some time to get use to him not being here; his words of wisdom, unwavering support, bear hugs, infectious laugh, and the literal twinkle in his eye are things I will miss as long as I live. As if that loss...

I know that everyone says time flies, but these past three years feel like they have gone by at lightning speed. I still can’t get over that the holidays are here again. It’s my favorite time of year, but it’s also when my anxiety skyrockets. Gone is the ease of the mostly germ free summer, and in comes rushing every infection known to man. Everyday I wake up thinking, “Is this going to be the day Connor gets sick again?”. If you’ve been here for a while then you know all about sweet baby Con Con’s VEO-IBD diagnosis and the rollercoaster ride we’ve been on. Most of the time I talk about how he’s doing or the wild range of emotions I’m going through at any given point, but what I don’t talk about often despite the fact that it is constantly on my mind, is how every single member of our little family is affected by this unpredictable disease. Two weeks ago Connor had a few appointments at CHOP. The night before we had to drive to Philly, I was in the car with Sadie bringing her home from...

 Hi.. it’s been a while. Life has been moving at the speed of light, and I had been trying to soak up every minute of fun and relaxation that I could with Jason and the kids. Our blissful carefree bubble popped last week as the kids went back to school.             We had a lot of fun this summer – from our annual family beach trip, to the 2 nd Annual Connor Cup, adding two new fur babies to our family, and everything in between. It’s bittersweet to see summer come to an end. I love the extra family time and peacefulness of summer, but am ready for everyone to get back into a routine. It’s also no secret that I LOVE fall!             This year we have 1 st , 3 rd , 5 th , and 7 th graders. Not really sure how we got to the stage of life where two of our kids are in middle school, but here we are. With a new school year comes a whole new level of anxiety that I’ve been...

     I ' ve been quiet over here for a while, but life has been anything but.  After our hospital stay in March I had hopes of easing into the end of the school year and into summer with little to no issues. It seemed like that could be the case for a week or two, but on April 15 th all of that changed. That was the day Connor started bleeding again.      If the past three years have taught me anything, it’s to not immediately panic when I see red. Our process is to notify CHOP, give it a few days, and if things don’t improve we get some labs. The labs after this particular episode showed that Connor had a GI infection which is always best case scenario. We just had to let it run its course – typically two weeks – and watch for dehydration and/or lethargy. I was able to breathe a little easier knowing we weren’t sliding down the dark slope… or so I thought.      Two weeks went by and Connor’s symptoms worsened which pushed my anxiety i...