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

  Don’t blink. A statement we hear often but don’t fully understand; at least for me, not until I had a quiet moment to sit back and reflect on the last nine months. That’s how long it’s been since I’ve taken the time to get all of my thoughts out here. In that time a lot has changed and a lot has stayed the same. Our kids are another year older – Sadie started her last year of Middle School and Cooper his last year of Elementary School. My Aunt Anne went to Heaven to be with my Uncle Pat, and my sweet Grandma wasn’t too far behind; undoubtedly happy to be back with my Grandpa, but let me tell you, losing some of the most important people in your life in such a short time span really sucks (sorry – there isn’t a nicer way to put it). After 17 years I left my job for a new opportunity that gives me more flexibility which has been great. A much appreciated added bonus – the company/people that I work with are some of the most supportive individuals you could be around. It comes w...

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...

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 ...

As Semisonic sings in their song Closing Time, “Every new beginning comes from some other beginning’s end.” Every year, December 31 st brings with it the closing of the past year and the promise of a new beginning for the upcoming year. For me, it’s a day that brings a wide range of emotions; more so this year than ever before. It is no secret that 2023 was an extremely difficult year for our family. From Connor’s illness kicking into overdrive, and too many hospital stays, to my uncle’s unexpected passing this summer, our emotions were tested often. Even with all of the trials and tribulations of the year, I refuse to look at 2023 as a year that was cloaked in darkness. The one thing that seems to help push me through the hard times is finding the good or a bright spot. Sometimes that is a whole lot easier said than done, but looking back on this past year, while a lot of dark times are painfully obvious, there were a whole lot of special happy moments too. This year opened our eye...

 Every year since 2017, as December 11 th nears, I can’t help but think back to the series of events that led to Jason and me adding a bonus baby to our crew. Some of you know this story as well as we do, but for all of our new friends out there, here’s a little background. Jason and I completed (or so we thought) our family in June 2016. After living in Dunmore, PA for 7 years, we packed up the 3 kids and the dog, sold our cute little starter house, and moved in with his parents while we searched for our forever home. Two months into our stay with Grammie and Papa Randog I realized something was off. At first we believed I had an ectopic pregnancy. A trip to the emergency room one Sunday morning, and a week filled with multiple rounds of bloodwork and doctor’s appointments instead confirmed that even though I had my tubes tied, I was pregnant with our fourth child. From the immediate two pink lines, to the vivid memories of those first trips to the hospital and doctor’s offic...

Thanksgiving – a time to reflect and show gratitude for all of our blessings. This has always been my favorite holiday for a variety of reasons, but mostly because it’s a weekend (not just a day) that brings together our family to enjoy each other’s company, indulge in some once a year foods, play some games, and share a whole lot of laughs. This year will be a bittersweet holiday. Between the ups and downs/uncertainty of Connor’s situation, and this being the first major holiday that we celebrate without my Uncle Pat, some of the joy of my favorite weekend of the year will undoubtedly be missing. It won’t stop us from carrying on family traditions and making memories though. Ralph Waldo Emerson once said “Cultivate the habit of being grateful for every good thing that comes to you, and give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude.” As I reflect back on all of the things that have happened thi...

The holiday season is rapidly approaching. A time that was long rooted in family and joy for me is now a time where I try to enjoy the moments while holding my breath. Connor’s health journey is a wild rollercoaster ride. We are never quite sure when it will jump off the track or how long it will take to get back on once the unraveling begins. Up to this point we have been extremely fortunate to have not spent any major holidays in the hospital. Unfortunately, other families are not so lucky. The past two years life has taught me many lessons. I personally feel the most important lesson is to share gratitude and give back. Even in the face of medical troubles and adversity, I can still see that our family is extremely blessed. We are surround by the most kind, caring, thoughtful family, friends, and community. When we are down, they pick us up, and when we reach out, they are always there to help in any way possible. At the moment, one of my biggest fears is Connor’s health decli...

    If you’ve been around here for a while, then you’ll know that most days I go through life holding my breath hoping for the best. When it comes to life with a child who has a chronic illness, you never want to get too comfortable because the fall will be a lot harder when the rug is pulled out from underneath you. Instead I choose to expect the worst and hope for the best. It makes the blow a little easier to deal with. You have heard me say that while we try to the make the best of every single day, there is always a small part of us that is waiting for the other shoe to drop. Well, guess what? The other shoe is starting to slip.      Since the beginning of August Connor has had some ups and downs in relation to his IBD. For the most part it has been situations that we were able to handle at home and had not interrupted our lives too much. Two weeks ago that changed. From that point forward his symptoms got worse by the day which prompted some convers...

     The days are long but the years are short; a quote that some find cliché, but one that I’ve found to be extremely relatable. For me, it feels like yesterday that we found out I was pregnant with our miracle baby after having my tubes tied. In reality, that was six years ago this past April. It also feels like yesterday that Connor was diagnosed with VEO-IBD, but this past May was the two-year mark of receiving that news. Today, that sweet baby boy (who will always be my baby no matter how big he gets) started kindergarten, and I cannot for the life of me figure out how we got here so quickly.      After a very difficult year, our family was blessed with one fun summer. From vacations to fun with friends and family, hosting our first golf tournament fundraiser, and everything in between, we made some pretty great memories with minimal flareups/symptoms/issues. The beginning of August brought a few small hiccups for Connor midway through a trip to Vir...