An easy transition to new vitamins is a breakthrough for my son

Our son Finley is a strong-willed and determined little guy. As he approaches his fifth birthday, he’s not shy about sharing his opinions. If he doesn’t want to do something or doesn’t like something, he’ll definitely let you know. As his father, this can sometimes be frustrating. However, I recognize that these traits will serve him well, especially as he navigates life with Alagille syndrome, a rare genetic disorder.

While Finley can be stubborn and challenging with his opinions and choices, we’re beginning to see him grow and learn how to navigate the world around him.

I’ve previously mentioned that Finley struggles with change, particularly when it comes to familiar daily activities, such as taking his medication. About a year ago, he had a couple of vitamins reintroduced into his care routine. The first few weeks of taking vitamin E and D were difficult, to say the least. Finley would scream and fight against taking the liquid vitamins, which was stressful for both him and us. My wife and I couldn’t find any effective solutions, so we had to endure the challenging behavior until these medications became normalized for him. Eventually, that time did come, and since then, he’s had fewer issues taking his medicine in the morning and evening.

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High-five time

Recently, when his vitamins and medication arrived in the mail from our children’s hospital, we received a surprise. The vitamin D, which had initially caused the most friction when it was reintroduced to his care routine, was from a different manufacturer. Seeing this immediately filled me with anxiety. When Finley decides to resist taking his medicine, it can turn into quite a battle, and I didn’t want to experience that all over again. He’d been taking his medications with ease, and the thought of that changing wasn’t something I wanted to entertain.

I gathered his vitamins and medication and braced myself to bring them upstairs, where Finley was getting ready for bed. When I showed him the new vitamin D, he initially started to protest. In my head, I thought, “Here we go.” But then Finley surprised me. He looked at the vitamin, licked the end of the dispenser, and without a word, he gave me a thumbs-up. He pushed the plunger and took the dose in one go.

I was shocked but tried to hide my surprise. We high-fived, and I congratulated him for trying something new. I could tell he was proud of himself.

This moment was a lovely glimpse into how Finley is growing up. He is learning about Alagille syndrome and its treatment. This past year has presented us with more than a few challenging behavioral moments with Finley, which is to be expected at his age. However, at times, I felt like those moments would never end. Every time we had to change his medications or add something new, it seemed like it would always lead to a battle. So experiencing a smooth, easy transition was like seeing a light at the end of a long, dark tunnel.

I am excited to see how Finley continues to grow and adapt to the challenges that Alagille syndrome will present in his life. One thing I know for certain is that if he can channel those strong emotions into facing challenges, he’ll be just fine.

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