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The Other Shoe is Starting to Slip

    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 conversations with his doctor at CHOP. Labs were ordered and the wait began. In order to decide on a course of treatment, Connor’s doctor needs to determine whether or not the symptoms are a result of an infection or worse, another medication failure. Never in my life did I think I would ever pray that my child would have an infection, but when it comes to our choices in this situation, that is exactly the outcome that we hope for.

    We were supposed to travel to CHOP today for a session with Connor’s GI Psychologist. Through conversations last night and early this morning with Connor’s doctor, we were notified of some of his lab results, and while not ideal, our prayers were answered. It turns out that Connor has two GI infections. Additionally his iron saturation is low. Although we are still waiting on some other labs to come back, we were able to start an additional course of treatment to hopefully elevate the infections and help lessen his symptoms. Some other tests were needed to ensure that his doctor has a complete picture of everything that is going on in his little body, so today’s appointment was switched to a virtual format in order to have time to get to the lab and run the remaining tests.

    The next few days will revolve around a lot of rest and cuddles for our sweet boy, along with a handful of fights to get him to take another new medication. In the very near future we will take the 2-hour trip to CHOP so he can get another iron infusion. Hopefully sooner rather than later he can resume life as a carefree happy kindergarten kid. In the meantime, I’ll be holding on to that shoe for dear life hoping it doesn’t have the chance to fall completely.




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