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Two Steps Forward, One Step Back

    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 instant.

    For the past week and a half Connor has been exhibiting some cold-like symptoms along with complaining of body aches. Our favorite pediatrician got him in for a sick visit and after swabbing him for everything under the sun, determined it was just a regular old virus that he would hopefully work through on his own. But if Connor has taught us anything in his short six years of life, it’s that nothing with him is ever ordinary. No, our little bonus baby/wildcard likes to keep things interesting whether we are prepared or not.

    I’m sitting here writing this blog post from our home away from home. Yesterday, Connor was admitted to CHOP again. Our sweet boy couldn’t seem to fight off whatever this virus is by himself. In need of some fluids for dehydration and to monitor some other levels, his doctor felt this was our safest option. While we are always comfortable (or as comfortable as can be in a hospital) on the GI floor of CHOP where we get to see some of our favorite doctors, physicians’ assistants, nurses, and child life team members, we’d much rather be home with Sadie, Cole, Cooper, Jack, & Ruby.

    This is the first time that Connor has been admitted to the hospital for non-GI issues which really got me thinking. VEO-IBD doesn’t just wreak havoc on ones GI system; it makes even the simplest germs impossible to fight without medical intervention. I am always so busy watching for signs of Connor’s UC issues that I never saw this one coming. The good news is, despite his body working overtime to kick whatever he has, it hasn’t seemed to ignite a GI flare. His doctors are hopeful that this will only be a short stay this time. After 24 hours of fluids he’s perking back up already.

    So as Jason and I enjoy some unconventional “special time” with our youngest child, I’m going to continue to count my blessings. When it comes to Connor’s health, even on the hardest days, there is still always hope for better days ahead. There is not a day that goes by that I don’t remind myself that while life altering, this disease is not life ending. Connor is fortunate to receive outstanding care from world renowned physicians in one of the best children’s hospitals in the country, and for that we will forever be grateful



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