Caleb Olson is like most 3-year-olds.
At home in December, he busily played with his sister, ran around and asked for candy more than once.
He also showed off one of his favorite shirts, a long-sleeve shirt with pockets secured by snaps.
It’s only once the pocket is unsnapped that a feeding tube port can be seen. Caleb needs the port as a result of a disorder caused by the deletion of a small part of a chromosome but it could make feeding time challenging.
So Caleb’s mom and grandmother started to specially design and sew his clothes — including, eventually, his favorite pocketed shirts — with slits and zippers to avoid having to strip the toddler just to hook his feeding tube up.
Now, those first few clothes made from old T-shirts three years ago have evolved into C.C. Moo a small business that until recently was run from the homes of Caleb’s mom, Anna Olson, and his grandmother, Eileen Weum, in Stoughton.
What started as a way to make life a little bit easier for Caleb and his family has grown into a 1.5-year-old business that has filled thousands of orders, grabbed the attention of Wisconsin business groups and made life easier for children with feeding tubes and their families.
“C.C. Moo got real big real fast for us,” Weum said. “This was just something we were just going to do for Caleb.”
Olson and Weum started C.C. Moo after realizing the homemade clothes they had started to design and make for Caleb had a wider appeal.
The business even recently beat some of Wisconsin’s more well-known companies in a recent “Coolest Thing Made In Wisconsin” competition and has received attention from those involved in the feeding tube community for their medically-adapted clothing.
That’s all in between Weum running a day care out of her home and Olson raising her two children as a stay-at-home mom.
Challenging feeding times
Doctors diagnosed Caleb Olson with DiGeorge syndrome, otherwise known more accurately as part of a group of other disorders known as 22q or 22q11.2 deletion syndrome, soon after he was born.
Doctors told the family that he would live for maybe one year, Weum said.
Caleb had a weakened immune system, trouble swallowing, heart surgeries, digestive issues, a cleft palate and went through hospital visits for illnesses such as pneumonia.
It also meant being fed through a tube, which would turn out to be a tiring struggle for an infant and family.
“You’re not just putting that bottle to mouth, soothing them and putting them back to bed,” she said. “You’re having to fully undress, hook back up, take it back off, and you’re repeating that cycle every hour ... it was a challenge for us.”
Olson said that Caleb has been working on improving his oral eating skills and hope that he someday won’t have to use a feeding tube.
Despite the additional challenges, Olson said they haven’t treated Olson, who acts as any 3-year-old would, any different.
“Caleb has ... made us look completely different at things,” she said. “We’ve learned one day at a time, that’s the new life motto, and we’ve just agreed that everything happens for a reason.”
Need for clothing
More than 350 conditions — and likely more — require tube feeding, said Traci Nagy, founder and executive director of the Feeding Tube Awareness Foundation.
Nearly 438,000 patients used a feeding tube in 2013, according to a 2017 estimate published in the journal Nutrition in Clinical Practice. Of those, about 43 percent were children.
Parents with children that tube-feed often can feel overwhelmed when a child is diagnosed with a condition that requires it, Nagy said. Knowing there is a community of other families with similar experiences in addition to resources, like social media, can help with the shock.
“It can be a difficult thing,” she said. “Like any new experience, it takes time to get used to. It becomes a new normal.”
Finding specialized products that can make life easier — like C.C. Moo’s clothing – for children with feeding tubes and their families can show them that having to tube feed isn’t something that has to be viewed as a negative.
“It’s such a joy when you find something ... because it signals that you’re not alone in this,” she said.
It was the struggle of frequent feedings with a tube that eventually led to Weum and Olson — who didn’t know how to sew before — to start C.C. Moo. Weum has been sewing as a hobby for much of her life, she said.
Weum said the first designs made of old T-shirts with “gaping holes” cut out of them for the feeding tube came out of frustration and “sheer exhaustion” over the challenge of tube feeding a baby, especially when he was sleeping. She said the idea of modifying clothes struck her once when she watched Caleb to give his parents a break.
“I’m like, ‘no way’ because we’re waking the child up (for) this and now he’s not going back to sleep and now we’re all up,” she said. “So then at least when he was lying (down) I could just hook him and unhook him and I didn’t have to move him to undress him to get any of those clothes off.”
The designs and quality of the clothes have evolved from old adult-sized shirts with holes to include many different variations and styles of onesies, T-shirts and even sun dresses.
They also launched a new design — clothes with an opening hidden in the side seams — last week, Weum said.
Once nurses and hospital employees at the American Family Children’s Hospital saw how practical Caleb’s clothes were, they said other families in similar situations would clamor for adaptive clothing to simplify feeding, Weum said.
“The nursing staff there had also seen that and were like ‘that’s genius, where did you get that? Where do we get these?’ ... and we’re like, ‘well, we made these,’” Olson said.
After that, Olson said she quickly learned how to sew after “having people see them and say, ‘you know, this could turn into something for you.’”
From a spare room to downtown
Since Weum and Olson first started filling orders for customers they’ve produced about 3,000 articles of clothing. Many of their orders come from repeat buyers. They’ve also donated many items to children’s hospitals.
The business started and until recently was run from Weum’s home using Olson’s childhood bedroom as their workspace.
Solid, patterned and colorful sleeveless onesies and T-shirts with zipper access to a feeding port start at $17.99 on C.C. Moo’s website, with long-sleeved shirts or onesies with pockets hiding the zipper access starting at $22.99. Many products can be customized for individual needs.
What all of C.C. Moos products have in common are fun designs that don’t draw much attention to the zipper or button feeding tube access slit.
“They’re super discreet,” Olson said. “What child wants to go out in public and have me be like, ‘here, let me rip this off.’”
Since the pair doesn’t sew full-time, they often work whenever they can find some spare time, sometimes pulling all-nighters to make sure they hit their 10-business day order guarantee because each order is custom-made.
The business has been granted three patents for its products.
The duo said they someday hope to turn C.C. Moo into something they can do full-time to support their families. Last month, they moved closer to that goal by moving the business into its own storefront in downtown Stoughton at 135 Main St., Suite 200A.
“We really would just like to get ginormous and do this,” Weum said. “We feel like it’s our responsibility.”
And even if C.C. Moo doesn’t turn into something bigger, Olson said she wouldn’t be disappointed because at least she knows they are making life a little more convenient for those affected by tube feeding.
“If we don’t make this into a bigger thing than what we’re hoping for, at least we’re giving back to these families because they’ve inspired and given so much to us,” she said.