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

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...

The blink of an eye – that’s all it takes to turn a mundane Monday night into a parents’ worst nightmare. One minute Connor was completely fine being wild and crazy before bed with his siblings, and the next I’m woken up out of a dead sleep at 11:15 p.m. to him shaking with a high fever and mumbling nonsense in his sleep. At first we just assumed it was the fever “talking”, but after a very long and uncomfortable night that turned into the wee hours of the morning, we knew something was very very wrong, and we needed to get our sweet boy some medical attention as soon as possible. Typically whenever Connor needs immediate medical attention we make the two hour drive to CHOP. However that wasn’t an option this time because he was very unstable. The plan put in place with his GI specialist in this type of situation is for us to take Connor to a local emergency room where he can receive immediate care, and CHOP will work with that emergency department to get him transported as soon as pos...

WARNING: Long-winded explanation of a short story. I am a firm believer that God puts people in our path for a reason. Over the course of the past couple of years, He has REALLY been stacking our path with people who have lifted us up and given us hope during our hardest times. One of our favorites (whom we’ve never actually met in person yet) is Adam. Before I get into why Adam is so special to us I’ll give you a little background. Almost 10 years ago my cousin Max started dating his now fiancé, Emma. She immediately fit into our family with her bubbly upbeat personality. A beacon of light, it’s no surprise that she attracts the same types of friends. One friend/college roommate in particular played a huge role in connecting us with Adam. The friend, better known as Quinn, is one of the most cheerful outgoing people around. On more than one occasion, Emma and Quinn were talking about our kids; more specifically Connor and his diagnosis/treatment at the time. Emma shared with Quin...

     Today marks the fortieth day of the year 2024. For the greater part of those forty days our family has been going through the motions – surviving not thriving as I like to say – hoping to catch a small glimpse of the sun. The dark days of winter filled with jam-packed schedules, January felt like it went on forever.      Since the beginning of December I feel like I’ve been holding my breath; afraid of what kind of germs were going around and what any one of our kids (or Jason and I for that matter) might bring home from school/work and pass on to Connor. He had been doing so well up to that point. The holidays came and went and minus a few minor adjustments to his treatment plan (nothing we couldn’t handle at home) he seemed like every other healthy happy little boy his age. I was still holding my breath but was relieved that we seemed to be making it through. As usual though, life decided to burst my bubble and remind me that things can change in an ...