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A Bump in the Road and a New View

    Fall 2021 came and Connor was symptomatic again, but this time is was the other extreme. I began leaving his doctor’s appointments feeling as if something was off. Connor was due for another scope, but this particular hospital kept pushing it off saying that “elective procedures were on hold”. My gut told me it was time to get a second opinion. We were extremely fortunate to get an appointment with a doctor at Children’s Hospital of Philadelphia who not only specializes in VEO-IBD, but is also the lead of a research study centered on VEO-IBD. After one appointment with this doctor and her Fellow, Jason and I left feeling a sense of calm that Connor was in the best hands possible, and we had a solid plan to help him lead a normal life.

    After a few appointments and an endoscopy and colonoscopy later, Connor was doing well on his daily oral medications and back to being his wild and crazy little self. It felt good to see him playing with his siblings and being the sweet silly boy that we all know and love, but I could not seem to shake the feeling that I was waiting for the other shoe to drop. I vowed to not read anything else about this disease and just enjoy being back to our ‘normal’. That ‘normal’ lasted until July of 2022. Then the other shoe dropped, and we haven’t been able to find solid ground since.

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