The Children's Institute Blog

The Waits Family's Project STAR Story

Posted by The Children's Institute - Oct 06, 2017

Pittsburghers Todd and Liz Waits first went to a Project STAR information session about foster care in 2012. Less than a year later, Nathan arrived.

He was their first placement and different from their biological son, Connor, just one month younger, in some ways – black to the family’s white, short to the family’s tall, and with a number of medical complexities, including a heart transplant, previous stroke, and ongoing seizure disorder.

None of that mattered.

“I try not to be cheesy but the second Nathan walked into the room, there was instant acceptance,” Todd said. “[Connor and Nathan] treat each other as brothers, too. He is just a part of the family. There’s no sense of ‘other.’”

“Nathan’s never like ‘Where did I come from?’” he added. “He’s never said anything about it being weird for him. It’s normal.”

Seven months after they started foster care with Nathan, the Waitses adopted him.

“It was right for us to take him in,” Liz said. “The following seven months there was a lot going on. Between learning how to be foster parents, while being foster parents, trying to bond with a kid who has experienced more trauma in his little, three-year-old life then I ever have – it was a rollercoaster, to say the least.”

What differs about adoptions like Nathan’s compared to those from a generation or two ago is that adoptive families often keep a biological parent or parents in the loop about the child’s life. Such is the case with Nathan and his birth mother, Lolene.

“It became very apparent to us that even though Nathan was a foster kid for nearly his entire life, the only consistent person he had was his birth mom,” Liz said. “As our love grew for him, it also grew for her. How could it not? When we hug her she feels like him, and when we see her she makes facial expressions like him. Also, they love each other!”

It’s been about four years now since Nathan arrived. The Waitses feel they might consider fostering again – but, for now, they want to focus on their immediate family.

“We want to make sure [Nathan] knows there’s absolute permanence here,” Todd said.

“A lot of people will say – in a thoughtful way – that Nathan is lucky to have us,” Liz added. “But we feel the very opposite. He didn't get to choose his life and circumstances he was born into. None of us do. Nathan has experienced a lot. I wouldn't call him lucky; I would call him very strong. We are lucky to get to be his parents, and get the privilege of seeing him grow up with his brother and see what kind of people they grow up to be.”

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Celebrate Healthcare Food Service Workers Week!

Posted by The Children's Institute - Oct 05, 2017

Leslie Kurban, the cashier in The Children’s Institute’s Squirrel Hill cafeteria, is the face of an organization that served 154,888 meals this past fiscal year.

But, for Leslie, whose food group we are profiling today in celebration of Healthcare Food Service Workers Week, it’s the people, not the meals, who help to pass the days.

“I see people every day. I know more about what they eat and what they drink than what their names are,” she laughed. “You can tell the time of day by what time people come in.”

Leslie is one of the more senior employees on a team of 21 that handles everything from running the cafeteria and catering events to serving patient meals up on the inpatient wings. In the dining room alone this year – from the fiscal year running October 2016 to September 2017 – they estimate they have served about 74,000 patrons.

“It just takes a lot of dedication and attention to seasonality, as well as attention to the market “ said Johanna “Jody” Michalik, director of food and nutrition services, and the head of the Morrison team for the past five years. “Today’s world is a lot more complicated. But it’s just keeping up with all the trends, the rules and regulations. There’s always something happening.”

In 2012, Michalik boomeranged from California to Pittsburgh – she used to live in central Pennsylvania – after working in school, corporate and hospital settings. Her last position in the San Francisco Bay Area, the Indiana University of Pennsylvania (IUP) graduate, served as operations director of five kitchens serving families, students and seniors in need, Open Heart Kitchen, a non-profit.

In the Behavioral Health Unit, on the fourth floor, Morrison presents Mediterranean style meals that must be healthy and interesting. So, all meats are baked, meals are cooked in extra virgin olive oil, and snacks include guacamole and pita chips with hummus.

On the 3W wing, though, they can get away with some sweets. For Sunday Fun snack, “We try to do desserts; the patients enjoy the treat” Michalik said.

In the dining room, there’s an even wider variety – everything from soups and desserts made from scratch, and grilled items like hamburgers, hot dogs, and chicken wraps, to a fresh-every-day salad bar and a self-serve entrée and breakfast bar, bagel-and-sandwich station. And then there are the specials.

“There are a few entrees I can never take off the menu because I’d have my head chopped off,” Michalik laughed. “The Pittsburgh salad; the taco salad; the ribs; the fried chicken, mac and cheese, and stewed tomatoes.”

Don’t worry, fans. They’re not going anywhere anytime soon.

Other things don’t change. Tomorrow, you will see Leslie’s smiling face behind the cash register.

“I am doing more now than when I started. I may be stocking, getting more stuff; I may be washing,” Kurban said. “I do the vending machines, too, for the evenings and weekends.”

“And I like it,” she added. “I can’t sit at a desk in front of a computer – I would die.”

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Nate Ragston: King of the Desserts

Posted by The Children's Institute - Oct 03, 2017

We have two words for anybody who wonders why the desserts in the dining room fly out the door so fast: Nate. Ragston.

Nate, who we’re profiling today as part of Healthcare Food Service Workers Week, has been here just one year but, in that time, the Texas native has made his presence known.

“Most the stuff you see out there, the desserts? They’re made from scratch,” Nate said proudly. “I make my own pie crusts, pie fillings, all from scratch. I make my own cake glazes and icings.”

“Nate is very proud of what he does here – and he should be,” said Johanna “Jody” Michalik, director of food and nutrition services.

Nate moved from Houston to Pittsburgh about three years ago and this is his first job in food services and catering. But he seems to have a knack for it.

“I’m always cooking – I come from six boys and no girls. You need to learn how to cook,” he laughed.

Does he have a favorite dish or dessert?

“Whatever I make, I’m into it fully,” he said. “It doesn’t matter what I make, I just enjoy cooking. And I just enjoy seeing people enjoy the food.”

While Nate hasn’t traded in his southern roots for the Pittsburgh Steelers – in addition to a deep passion for the New Orleans Saints, Nate introduced New Orleans-style beignets to The Children’s Institute – he does admit there’s one thing about Southwestern Pennsylvania he could take or leave.

“You can keep the snow – in Texas, we don’t see that much of it,” Nate laughed. “I’m alright ‘til winter rolls around.”

One thing does keep him smiling during the second half of the calendar year, though.

“On Sundays, I’m glued to football, switching on TV between that and ESPN,” he laughed, before adding, “And maybe a little from the cooking channels, to spruce it up.”

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National PT Month: Ellen and the UEU

Posted by The Children's Institute - Oct 03, 2017

Physical therapist Ellen Kaminiski, whose work we are profiling today for National Physical Therapy Month, strapped eight bungee cords around two-year-old Caleb Naugle. They were inside the Universal Exercise Unit, or UEU, a giant metal frame about eight feet squared and 200 pounds, when the therapy began at The Children’s Institute of Pittsburgh’s Wexford satellite.

“I’ll get it,” said Caleb – who has cerebral palsy – as he stretched the cords to reach for a piece of foam fruit in the grating of the cube.

“I need to work on his quad strength so we’re doing lunges,” Ellen said. “It’s just a very creative way of getting him to strengthen.”

Caleb is learning to walk, with all of the complexities that brings. UEU is teaching him how to do it right.

“A typical kid, when they’re learning to walk, 1,000 times they’ll fall, up and down, up and down,” Ellen said. “A lot of our kids never fall; we catch them. They don’t know the feeling. Caleb used to get very tearful when he’d fall. A lot of kids don’t contract the muscles quickly enough to walk, run, jump – gross motor skills, really.”

The UEU, which The Children’s Institute stocks at its Squirrel Hill campus and most of its satellites, is fully customizable, meaning therapists can use a seemingly unlimited combination of cords, weights, bands and pulleys to isolate muscles in their patients’ bodies to exercise. From training young toddlers to sit or walk to rehabilitating older kids who need to work on upper-body strength, the UEU is highly versatile.

“Up on your tip-toes, fly him over – Vroom-PEW! Back on your knees. Nice Job,” Ellen said as Caleb worked on jumping in a weightless space – assisted by rubber chickens, of course.

The Children’s Institute of Pittsburgh is the only facility in Western Pennsylvania known to stock and be trained officially in the UEU, Ellen said. The nearest? Cleveland. Two decades ago, though, children looking to exercise in a UEU had to trek to Europe.

“In Poland and a good part of Europe, the UEU’s a very prominent piece of equipment – it’s like a treadmill to us,” Ellen said. “Even the poorest of facilities have one of these.”

Ellen trained in the UEU about 10 years ago with a prominent advocate of the equipment, Polish therapist Izabela Koscielny, who came to America to practice.

“She came to a clinic and was, like, ‘Where’s your exercise unit?!’” Ellen said. “So they started bringing them over from Poland.”

For the past three weeks, five days a week, Ashley Ohler has trekked nearly two hours each way from Shanksville to Wexford for intensive therapy for her son, Gabriel, 3, who has spinal bifida. The UEU is getting him to work muscles in his legs.

“He’s definitely gotten a lot stronger from it. I think all of the therapists here have done an amazing job getting him engaged,” said Ashley, as Gabriel swung his weighted legs on a table in the UEU. “His doctors told us before he was born he’d never walk. They told us before we had him that he’d have very poor outcomes. He does more than they expected.”

And what does Gabriel’s brother – Bryson, 4, who urged him to kick plastic bowling pins off the table during therapy – think of the UEU?

“It’s far out,” Bryson said.

“And you’ve gotta drive a long ways to get here,” Ellen said.

And without a pause, Ashley replied.

“It’s worth it.”

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Guitar Slinger Kicks Off Cafe Concert Series

Posted by The Children's Institute - Sep 28, 2017

He’s been called “the greatest labor singer in the United States today.” But, on Tuesday, West Virginia musician Tom Breiding wasn’t playing in front of thousands of coalminers-union members. His audience was five classrooms full of Children’s Institute Day School students. And he shined.

Breiding played original material, as well as covers of artists like Glen Campbell, adding a country-ish twang to his down-home folk style. He even sang a piece about acclaimed singer-songwriter Hank Williams.

“You guys are always such a wonderful audience,” said Breiding, making his fourth Children’s Institute appearance, between songs. “This next one is a beautiful song. I’m glad I could share it with you today.”

“He’s good, really good,” said donor Ray Wojszynski, whose support is helping to make this year’s Café Concert series possible, as Breiding strummed an acoustic guitar nearby. “It’s gratifying to be here. It makes me feel good – it really does. That’s why I want to do this, to enrich the kids’ days a little bit.”

It seemed to enrich them more than a little bit. Young attendees clapped loudly between songs and occasionally hooted and hollered in response to Breiding’s lyrics.

After the show, Breiding said playing for a group of children with special needs “is not a lot different” than playing for any other crowd.

“It’s easier because I can really be myself,” Breiding said.

“I am excited about this year’s expanded Café Concert series,” added music teacher Eric Emmons. “We will be giving twice as many students opportunities to enjoy live music and work on life skills associated with music in a public space.”

Did you miss the chance to see Breiding in person at The Children’s Institute? Visit him online at www.tombreiding.com or pick up the soon-to-be-released new CD by Bill Toms and Hard Rain, an eighth-piece band in which Breiding plays guitar. It’s out Oct. 27.



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Donor Profile: The Mackie Family

Posted by The Children's Institute - Sep 26, 2017

When Shana and John Mackie talk about supporting groups like The Children’s Institute, words about the spirit of philanthropy and the nature of their giving spill out of them, unscripted and pure.

“John and I are so stinking blessed, it’s ridiculous – God is in our lives,” Shana said recently. “God is so deeply woven into our systems and our universe. We kind of want to spill that over to other people. ‘You could do that!’ ‘Who’s in the room I can help today?’ ‘Who can I encourage today?’ We want people to say, ‘I can do this, too!’”

“We believe we’re not just here to accumulate stuff and serve ourselves,” John said. “There’s a greater meaning to life – you have a duty to help other people, be generous and share.”

To that end, the charity-minded Wexford, Pa.-area couple launched Party With A Purpose, an annual philanthropic event that raises funds for local causes and non-profits. The first event, in 2012, helped Haiti and, in the years since, the group has raised more than $115,000 for six area nonprofits. In 2016 alone, the Mackies' event donated $23,410 to The Children’s Institute of Pittsburgh.

But they don’t donate just to donate. For the Mackies, it’s a calling. John said the spirit of their philanthropic work even finds its way into his day job, where he serves as an investment advisor for wealth management firm Hefren-Tillotson.

“[Clients ask] ‘Do I have enough for retirement?’ That’s really important. But, I tell them, ‘What we’re looking at here on paper, that’s just money, it’s just that,’” John said. “‘You have to think of what’s really important in your life. Now’s the time to start thinking, ‘Do you really want to spend it all on yourself?’”

Shana and John said their philanthropy also sends clear messages to their three children – Noah, 11; Madison, nine; and Logan, six – about the important things in life.

“I think we model. Not only do we model, we pause and explain,” said Shana, who worked with John and her children to throw the fundraising K.I.N.D. event – which stood for “Kids Inspired to do Noble Deeds.”

“For me, the best part of the whole event was when we set up the donation box and each of my kids went to their piggy banks and put in the first $15 or so,” John said. “I think both Shana and I came from homes that set good examples. It was common for someone to have a birth or a death in their family and we wouldn’t hesitate to think, ‘Hey, why don’t we drop off a meal for the Smiths?’ I think it’s important to encourage people to do that.”

The message clearly is getting through.

“I remember starting to give back to others a few years ago when we would go to the Pirate games and pack brown-paper-bag lunches. We would pass the lunches out to the homeless people around the stadium,” Madison said. “That really has stuck with me as far as trying to help others. In school, I like to be a good friend to others. I like to read books to my bus buddy who is younger than me and is a little shy.”

“I want to treat others the way I want to be treated,” Noah said. “You don’t always know why the person got into the situation – like why they are homeless, why they are acting a certain way – but you should always be willing to help no matter what.”

“Helping others is the right thing to do,” Madison added, resolutely.

Shana said it doesn’t take a purposeful Party to make a difference, either. She enjoys simply sending Hallmark greeting cards to people to mark occasions or let them know she’s thinking of them.

“It could be a lemonade stand or paying it forward at Starbucks – three or four bucks – it’s worth making somebody’s day, making somebody happy,” Shana said. “There’s so much intention we’re looking to spill out to our kids – and to those around us.”







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Celebrating National Security Officer Appreciation Week With Dave Bolcar

Posted by The Children's Institute - Sep 22, 2017

Dave Bolcar, a security officer for The Children’s Institute since January 2015, walks his daily rounds inside and outside the Pittsburgh campus five days a week, from 1 to 9 p.m.

He works alongside PlantOps and his fellow security officers, monitoring 16 cameras and 27 zones from his desktop computer screen. He keeps an eye on those entering the main building.

And, when he works a weekend shift, he takes the lead on communications in the event of a fire or building alarm.

“I tell them, ‘I protect the integrity of the patients, the building, the volunteers and staff – trying to keep the bad people out,’” Dave said.

But something else gets him out of bed in the morning and driving 30 miles from his Westmoreland County home to The Children’s Institute’s Squirrel Hill campus.

“It’s the kids – seeing them come in and seeing the progress they make,” Dave said. “You see them coming in a wheelchair and, the next week, they’re on crutches. It’s all about that progress.”

Dave, who we are profiling today as part of National Security Officer Appreciation Week, is often the first person you see when entering our Shady Avenue entrance, and he said he enjoys interacting with the kids – a bug he caught from his five-year-old son.

“I’m a very simple person,” Dave said. “I’d much rather spend a night at home with my family than go out.”

When he works – he’s been a security officer for seven years, previously at a St. Barnabus care home – he likes to keep busy, helping people sift through to the lost and found, jump-starting stalled patient cars, or tending to pedestrians who might fall on the sidewalk. When emergencies occur, he helps usher in emergency medical services. And, when he’s working nights and a behavioral health admission comes in, “you try to make the transition as easy as possible for them.”

“For the most part, it’s quiet,” he said, “but when a condition or safety support is called, we respond appropriately, using policy as a set of guidelines”

Take a moment today to thank Dave for his service and, while you’re at it, thank our other security officers, too. They are: Anna Forrester, Nick Bagnato, Jr., Franck Dakaud, and Phileasha “Phe” Jemison.

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Learning To Walk All Over Again

Posted by The Children's Institute - Sep 21, 2017

“Noah, it looks good. The harness is in the perfect spot.”

Noah R. Torok stands up from his electric wheelchair on a conveyor belt with the aid of a blue and black harness wrapped tightly around his waist and shoulders, as three clinicians start the process of teaching his body how to walk again. He hasn’t taken a step on his own in more than 15 months.

“That was three or four steps in there where I got really good response,” said physical therapist Laura Fedoronko, manually moving Noah’s right leg into a steady pace. “Part of the locomotor training is to get him to activate. Hopefully, the goal is he’ll initiate.”

“I just felt something in my muscle,” Noah replied.

It’s been a long road for the McKeesport teen, who is being featured today as part of September’s National Spinal Cord Injury Awareness Month. In May 2016, he suddenly lost feeling in the left side of his body. By the time he was rushed to Children’s Hospital of Pittsburgh of UPMC, he couldn’t breathe on his own anymore.

A four-hour MRI revealed a chiari malformation, where the brain develops or is pushed down below the skull into the spinal column. His brain stem was putting pressure on his spinal cord, which led to paralysis and the build-up of fluid in pockets of his spinal cord. Doctors in Pittsburgh said they never had seen such a severe case.

“They said he would never move again,” Noah’s mother, Kim, said. “When we got to The Children’s Institute, that all changed. Slowly, he started getting more movement.”

Noah is in the second week of a seven-week locomotor training program at The Children’s Institute, where, three times each week, a group of clinicians physically move his limbs to teach him how to walk again.

“What we’re trying to do is stimulate the nervous system,” said physical therapist Katie Shroyer, who oversees the LT program. “We’re trying to promote a typical walking pattern for our kids.”

Katie will be the first one to tell you, though, that the ultimate goal of LT isn’t always just walking. If caretakers can get a patient to center their head or the trunk of their body better with less physical assistance, that’s an improvement. What if it takes two people to help get a patient out of bed?

“If we get it down to one person, that’s a huge change,” she said.

Noah’s short-term goal is simple: his mother said he wants to ride in the front seat of a car instead of in the back of a handicapped-accessible van in his wheelchair.

“Long term? He wants to see if he can walk again,” Kim said. “Nobody can say. Can he do this in a year or two? They can’t predict it. I do want the best for him. I want him to improve the most he can. And we’ll take it day by day.”



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Support Children's Institute at Select Spirit Halloween Stores

Posted by The Children's Institute - Sep 19, 2017

You, too, can support our Amazing Kids -- all you have to do is gear up for Halloween.

You can send 10 percent of your purchase and, if you'd like, a donation to The Children's Institute of Pittsburgh by shopping this fall at select Spirit Halloween stores in Pennsylvania.

Stores that are donating proceeds to The Children's Institute include:

ALTOONA -- 259 Park Hills Plaza, Altoona, PA 16602
DUBOIS -- 210 Commons Dr., Dubois, PA 15801
GREENSBURG -- 5256 Route 30, Suite 181, Greensburg, PA 15601
HOMESTEAD -- 226 West Bridge St., Suite 31, The Waterfront, Homestead, PA 15120
INDIANA -- 2334 Oakland Ave., Suite 65, Indiana, PA 15701
JOHNSTOWN -- 500 Galleria Dr., Suite 114, Johnstown, PA 15904
MONROEVILLE -- 4692 Old William Penn Highway, Monroeville, PA 15146
WASHINGTON -- 301 Oak Spring Road, Washington, PA 15301
WEST MIFFLIN -- 3075 Clairton Road, West Mifflin, PA 15123

Putting on Music Smiles – and other programs like it – at The Children’s Institute of Pittsburgh would be impossible without Spirit Halloween and its support for our Therapeutic Activities Department. The Spirit of Children fundraiser, which recently started for the 2017 Halloween season, has raised $37 million for child-life activities at North American hospitals during the last few years.

At The Children’s Institute alone, Spirit Halloween has donated $212,887 fueled by supporters’ purchases to date. In FY2017, that amount totaled $49,476.

"The Children’s Institute is extremely grateful to Spirit Halloween for their generous annual support, which provides resources for our Therapeutic Activities Department and therefore the best therapeutic activities for our amazing kids," Development Director Emily Peters said.

To save 10 percent off your entire order and donate 10 percent of your purchase to us, simply go to select Spirit Halloween stores with the coupon above.

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Battling Phelan-McDermid: Ada's Story and The World of Mae

Posted by The Children's Institute - Sep 15, 2017

Ada Mae Grashow, who celebrated her ninth birthday yesterday, hit her milestones a little late as a young toddler, learning to walk at 2 and talk at 4. But the real story doesn’t begin until halfway through her fourth year of life, when her health and development started to rapidly regress.

“She lost the ability to sit up. She lost her words, her ability to babble. Her hands atrophied and she started chewing holes in her fingers,” said her mother, Katie. “She went from smiling all of the time to not making eye contact, and just crying and moaning. It was devastating. And we had no idea what was going on.”

After nearly a year of doctors’ and specialists’ visits, they found their answer – genetic tests revealed Phelan-McDermid syndrome, an extremely rare genetic disorder caused by deletion or rearrangement of chromosome 22. Doctors said they didn’t know if Katie’s daughter would ever return to the smiling, laid-back little girl she once was.

“I don’t know if I’ll ever experience that Ada again but I feel she’s in there somewhere and there’s a very thick fog,” Katie said. “I just don’t want her to feel shameful about being able or not being able to do this or that. [We foster] a culture of acceptance and dignity.”

There are obstacles. Insurance will not fund all of Ada’s therapies and, since she is not potty-trained, schools at first did not accept her for admission. So, Katie did what came naturally – she started building a foundation that would help fund Ada’s needs and spread the word about Phelan-McDermid.

That foundation, dubbed The World of Mae, soon will fund the building of a new school space in Ada’s Fox Chapel-area home where she can be taught and provided therapy, Katie said. Eventually, they want to create a space other families with special needs can use as a community resource. Ada continues to receive speech and physical therapies regularly at The Children’s Institute of Pittsburgh in Squirrel Hill.

The foundation also pays for Ada’s frequent visits to New York, where specialists in Phelan-McDermid – there have been only 1,300 to 1,500 cases reported worldwide – provide her specialized care. A World of Mare 5K and 1-Mile Fun Run will be held at North Park Oct. 7 to help fundraise for the organization; registering by this Sunday will get you a free World of Mae t-shirt.

“[Ada] just teaches us a whole new way of living,” Katie said. “I’ll be damned if her life is turned into a pity thing or a sad thing – that’s not what she’s all about.”

Despite being largely nonverbal – her sister, Wilhelmina, says Ada speaks a fairy language – Ada remains resilient, matching the pitch of the sounds she makes to others’ voices, said Lee Anne Miller, a board certified music therapist in Pittsburgh’s North Hills who sees Ada twice a week.

“I’m working to find ways to connect with her,” said Lee Anne, who wrote and performed songs with Ada before her regression roughly four years ago. “My definition of progress is based on Ada herself. I thought [some progress] might take years but I’m just looking to prolong that give-and-take, and find ways of communicating that works for Ada.”

Maura Maloney, a Children’s Institute speech-language pathologist, has been seeing Ada since January 2015 and currently is working to engage her meaningfully in tasks and play, teach her to respond to prompts and tasks, and focus on reciprocal interaction. She’s even sampled a little low-tech alternative and augmentative communication (AAC) with to GoTalk device, since May.

“I do find she has the ability to be present and to tolerate the pace of the things we do,” Maura said. “She has a great persistence. She’s a really strong kid – there’s a lot stacked against her.”

Because Ada’s condition and pace of recovery is so unique, Maura said it’s important that she and others “throw out the rubric you had” and focus on her individual development.

“She has pretty good days and she has some lethargic days,” Maura said. “But she’s an amazing kid. And her family’s always involved – and that’s helpful.”





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