‘Something to Look Forward to’: How House Programs Brighten Days
Remington Reece – Remi, for short – is a soon-to-be five-year-old who is spunky, sarcastic, and according to her mom, Alison, “the funniest kid I’ve ever met.”
Along with her twin sister, Sawyer, Remi keeps the Reece family’s hands full. They’re always on the move, whether it’s soccer, dance, or simply playing in the mud – one of Remi’s favorite activities.
That’s because, as anyone who’s spent time with children can attest, kids like doing stuff.
For Alison and her husband, Brandon, entertaining the girls can be chaotic at times, but there’s no shortage of things to do around their Greeley, Colorado home.
But how could they come up with regular activities for the kids while one goes through an intensive medical therapy program for two months, in a different city, more than 500 miles away?
Thankfully, they had a place that Remi calls “my home in Omaha.”
When Alison was about 18 weeks pregnant, her doctors learned there were some significant issues on the horizon. She had to be hospitalized for six weeks to give the girls as much time as possible to grow in utero, but in late February 2018, they could wait no longer. Sawyer and Remi were born nearly three months early, weighing just three pounds and two-and-a-half pounds, respectively.
Despite being twins, each child had unique medical needs. Sawyer’s heart was causing her problems, requiring a surgery when she was six months old. Thankfully, she is doing well now, occasionally going to occupational and speech therapies, but otherwise thriving.
Remi’s journey, however, has been a bit more complicated.
Almost immediately after birth, it was clear Remi needed additional assistance breathing. She had fluid in her lungs, so doctors placed her on a high-flow oxygen regimen, and while it did help, it also made feeding a challenge.
Remi couldn’t eat without spitting up, so she wasn’t gaining enough weight, and when she was three months old, they tried bottle feeding. Things didn’t improve right away, but she did stabilize enough to where Alison and Brandon could bring her home.
During the girls’ stay in the NICU, because the family’s home was more than an hour away from the hospital in Aurora, Colorado, Alison and Brandon were able to stay at the local Ronald McDonald House. That became their home-away-from-home for the next four-and-a-half months, with Sawyer joining them after 75 days in the NICU.
Doctors were hopeful that getting Remi home could help her start to feed better, but unfortunately that did not come to fruition. Alison says, “That month was probably the scariest month. She wasn’t eating, she was losing weight.”
Combined with the stress of Sawyer’s heart issues, Alison felt overwhelmed, saying, “It was probably the worst time of my life.”
By the time Remi turned seven months old, it was clear that further intervention was needed. She had a gastrostomy tube, or G-tube, placed to allow her body to receive the nutrition she needed directly into her digestive system. While having additional tubes attached to her daughter wasn’t ideal, Alison recalls feeling a bit of a relief when it happened, as it lessened that part of her burden. It also gave Remi a chance to catch up on the growth chart, at which point doctors could take time to focus on another medical hurdle: her bilateral hip dysplasia.
Essentially, Remi’s hip joints were unstable, so she had to have three separate surgeries, including one resulting in her needing to be in a spica cast for almost six months. And that was in her first two years of life.
Once that was under control, her feeding issues were once again pushed to the forefront. Remi was totally dependent on her G-tube, so Alison and Brandon looked at options for feeding clinics. One option was seven hours to the east, in Omaha, Nebraska: the Munroe-Meyer Institute.
When the family visited Omaha for an evaluation, they asked about housing options, and when they learned they could stay at Ronald McDonald House Charities in Omaha, any concerns about being so far from home were washed away. Alison remembers thinking, “Okay, we’re golden. Being seven hours from home is totally manageable, we’ll be able to fully focus on our daughter’s needs because of the Ronald McDonald House.”
While Alison and Brandon were comfortable with the idea of traveling to Nebraska for the feeding therapy program, Sawyer and Remi were unconvinced. Alison says the girls were asking questions like:
Is there a playground?
Why can’t we bring all our toys?
Where are we going to eat cereal in the morning?
All logical concerns for a pair of four-year-olds.
Their parents were able to calm them down some, but Alison says what sealed the deal for them was when they walked in the front door of the House and immediately saw a giant glass-enclosed toy room, filled with different toy options from floor to ceiling. And the girls got to choose whatever toy they wanted.
“Remi looked at me and she was just like, ‘I can pick any toy in this in this area?!?’ And I’m like, ‘yes, any toy.’ I think it took a good 35 minutes of her inspecting each toy before picking one”.
With their fears assuaged, it was time for Remi to begin her therapy.
For eight weeks, Remi would go to the clinic around 9:00 am, work with the team there to learn the skills she needed to begin eating food by mouth, then come back to the House around 4:30 pm.
It’s an intense program, and while the consistent nature of the routine contributes to the patients’ success, it can also become monotonous and tiresome, for patient and caregiver alike. For Remi and her family, it helped to have something to look forward to every day.
“Being able to come [to the House] and do something special, it brightened up our days,” Alison says, adding, “being inside a hospital setting all day-long is exhausting.”
One of Remi and Sawyer’s favorite activities was hanging out with Ralphie, RMHC’s Chief Cheer Officer. According to Alison, “if we could bring Ralphie home, I’m sure we would have brought that dog home.”
Along with Ralphie, who is a certified therapy dog himself, other therapy dogs visit the House weekly to make sure kids like Remi and Sawyer, along with the adults in the family, have a moment to enjoy the company of a furry companion. Alison says that was “kind of a highlight to get through the day sometimes.”
Another thing the girls loved was making crafts through the Project Sunshine program. With Project Sunshine, students from Creighton University come to the House with various crafting supplies for all members of the family to enjoy.
Several times during the family’s stay, the House had salon nights with staff and students from Capitol School of Hairstyling and Esthetics. This allowed the whole family a chance to get haircuts, hairstyling, or even a simple hair washing to provide a bit of comfort amidst the chaos.
Alison says, “The stylists are just incredible. They’re so pleasant to talk to as a parent, and so engaging with the girls.” Remi and Sawyer were always quick to make sure their mom signed up as soon as the salon night announcement went out, and even now, while at home, they think they get to have the full salon experience all the time. “They’re so spoiled by that now,” Alison jokes.
If there wasn’t an organized activity at the House, the girls would make their own, riding bikes (donated by CLAAS of America) around the backyard, or playing games in the playroom. They had a sense of comfort and safety, made even more pronounced by how kind and warm the staff was, to the girls, as well as Alison and Brandon.
“I feel like most of the staff have this, like, special radar, and they kind of know when parents are struggling,” Alison says. “Mackenzie [RMHC program manager] and Vicky [chief program officer] would check on me a lot, see how things are going.”
She also appreciated the suggestions from staff and volunteers on places to go and see while in Omaha. Anytime she was looking for activities around town, someone would mention the Henry Doorly Zoo (which also had a short-term preschool program Sawyer attended for the several weeks she was here), or the Omaha Children’s Museum, or Fontenelle Forest. All activities made easier by the fact that families have access to complimentary passes to those attractions during their stay.
Alison adds, “When it was around the holidays, I was given so many recommendations for best places to trick-or-treat, where to visit Santa, all of that. I really felt like the staff and volunteers wanted us to live our best lives while going through a difficult time.”
When Alison told some volunteers that her family loved ice cream, one person suggested heading up the street to Coneflower, a local ice cream shop in the Blackstone area. Alison says she took the advice and it became a regular trip for the family. “We went there like every week.”
It was that kind of welcoming environment that has made their time in Omaha easier. Alison says, “The people in Omaha are so nice. It was easy to fit in; everything was amazing.”
By having so many fun distractions while outside of clinic, Remi was able to fully focus on the program inside of it, and after those eight weeks, she graduated from the feeding therapy program with flying colors.
Alison says prior to the program, Remi “ate like a bird,” basically just pecking at a bite of food here and there. Now, she’s able to eat some meals of pureed food by mouth, a huge step forward. She still has the G-tube and will continue to use it for some time, but her team is very encouraged by the progress she’s made, and after another few weeks at Munroe-Meyer this coming spring, Remi should continue to improve.
During those weeks, they’ll once again be able to play with Ralphie, make crafts, ride bikes, and the other things active five-year-olds enjoy, because there’s no shortage of things to do at Remi’s “home in Omaha.”