A big-boy bed has been a positive change for our son with Alagille

Bedtime has been tricky in my house over the past few months. My son Finley, who was born with Alagille syndrome, just doesn’t seem to want to sleep. Evenings are often a challenge for my wife and me, with Finley coming out of his room, finding unique places to sleep, and even squirreling away items like headphone cases and necklaces from our bedroom.

While we’re still working through our bedtime challenges with him, one change has been immensely positive for all of us: a big-boy bed.

Finley had been using a toddler bed for a long time. Even at 4 years old, he’s smaller than his peers and only just recently started wearing size 3T clothing. Though he fit in the toddler bed size-wise, it became clear that he’d aged out of it. He was getting out of bed a lot. Even if we cleared the bed of toys and books, he’d fill it right back up with stuff after we left the room. He barely had any room!

We’d been trying to use a big bed as an incentive for potty training, but it became clear that the process was taking longer than we anticipated. He was showing all the signs of needing a bigger bed, so I secretly placed the order.

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When the box arrived, Finley noticed right away and started asking questions. I told him I was working on something special for him.

The next thing he saw was me bringing down the old toddler bed frame and putting it in the garage. I thought this move would make him excited, but it elicited the opposite response. He immediately started crying, as he thought we were taking away his bed for good. We quickly explained that his new, big bed had arrived and I was setting it up. The tears quickly dried up and the excitement set in. Seeing his reaction was special.

Finley spends his first night in his new bed. (Photo by Jay Sandstrom)

Finley was over the moon about his new bed. He now has matching Lego Star Wars sheets with his older brother, Jackson. A little footstool allows him to climb into bed with ease, and he has plenty of room for his stuffies and books.

Bedtime still has its challenges. One of the biggest is the itching he experiences because of cholestatic pruritus, which becomes more intense in the warmer weather. When he comes out of his room, it’s often to tell us he’s itchy. Medication helps, but it doesn’t solve the issue entirely.

At least I know that, in this new bed, Finley is more comfortable than he was before. He has a cooling pillow, and we keep a fan next to his bed to keep him as comfortable as possible.

Even after a few months, Finley is still excited about his big bed. He loves when our cat lies down with him, and he enjoys reading books using the lamp next to him. While I wish he’d stay in his room all night, I’m happy knowing how pleased and proud he is of his big-boy bed.

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