The Children's Institute Blog

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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Music Smiles, Thanks To Spirit

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

Before Harry Levicky, a dueling piano player best known for his tenure with Johnny Angel and the Halos, rode the keys of his Korg keyboard into the poppy refrains of “Brown-Eyed Girl,” he provided his audience of young Children’s Institute of Pittsburgh inpatients with instructions.

“You like music, I hope,” Harry said, to a shouted chorus of “YEAH!” in The Day School gymnasium. “I hope that some of this moves you. Sing along! If you want to do some dancing, that’s fine.”

During the quotable bridge of the song, Harry even stopped pounding the keys altogether, leading the audience in the repetition of “Sha-la-la” as he clapped over the Korg’s electronic percussion.

“This requires musicians who are very comfortable making contact,” said Annie Pugar, founder of The Sonny Pugar Memorial, Inc., which funds Music Smiles programs at area hospitals with about 200 artists like Harry. “They don’t have to have a lot of years behind them but it helps. The have to know people. The contacts the people make are just as important as the music.”

“That’s the perk of this,” music therapist Rachel Wanovich said. “They get off the unit and they get to know what it’s like to get excited by a concert.”

Putting on Music Smiles – and other programs like it – at The Children’s Institute of Pittsburgh would be impossible without Spirit Halloween. Its Spirit of Children fund-raiser, which is about to start 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.

“Without the annual monetary donation from Spirit Halloween, monthly programs like the Music Smiles program for patients and families would not be possible. Even though child life is so critical for patients and families to provide developmentally appropriate activities in an out of the normal environment, these services are non revenue generating. As a result, we rely entirely on donors like Spirit Halloween to provide funding for all of our child life programs, activities, special events, playroom materials, craft supplies, technology items, and gifts for patients for birthdays, Christmas, Easter, etc.” said Sarah Miedel, Manager of the Therapeutic Activities Department.

This year, Spirit of Children is aiming to hit the $8 million dollar mark across North America and they need lots of help to get there. Stay tuned to this blog for information about Spirit Halloween’s philanthropy and how you can support The Children’s Institute of Pittsburgh by buying Halloween gear at a local Spirit Halloween!

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Sign Up For Our Career Fair For Registered Nurses

Posted by The Children's Institute - Sep 14, 2017

Sign up today for our Career Fair for Registered Nurses, set to be held at The Children's Institute of Pittsburgh's Squirrel Hill campus on Monday, Oct. 9, 2017 from 9 a.m. to 4 p.m.

Don't miss this exciting opportunity to meet with members of our nursing and HR teams to discuss the next step in your career and visit our amazing facility, which is located at 1405 Shady Avenue in Pittsburgh. Pre-registration is required. To schedule your interview, call our recruiter, Lisa Wakefield, at 412-420-2273.

We are seeking Pediatric Nurses to serve children with complex medical needs in our inpatient rehab unit.

Successful candidates will be graduates of an approved school of nursing, BSN preferred. A current PA RN license in good standing is required. Minimum of one year pediatric or rehabilitation experience preferred. New nursing graduates will be considered. 
We also are seeking Behavioral Health/Psychiatric Nurses
to serve children with urgent behavioral health needs in our inpatient adolescent behavioral health unit.

Successful candidates will be graduates of an approved school of nursing, BSN preferred. A current PA RN license in good standing is required. Minimum of one year psychiatric and/or behavioral health experience in a behavioral health setting and/or medical/surgical experience preferred. New nursing graduates will be considered.

We offer rotating day/night shifts, as well as steady evening, night and weekend programs.

Free parking will be available during the day of the event.

For more information about our open positions, please visit www.amazingkids.org/careersRead More...



Doctor Spotlight: Aileen Oandasan

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

Name: Aileen Oandasan, M.D.
Title: Director of Behavioral Medicine

When did you start working at The Children’s Institute?
March 2016

Where did you grow up?
Texas

As a child, what did you want to be?
An attorney or a physician

Where did you go to school?
Undergraduate: Southwestern University, Georgetown Texas
Medical School: Texas A&M College of Medicine
General Psychiatric residency: Georgetown University
Child and Adolescent Psychiatric fellowship: Johns Hopkins Hospital

What inspired you to go into your field of study?
My father is a retired primary care physician while my mother worked as his nurse. I grew up with a family who cared and loved their patients as if they were truly caring for one of their own. Before the day of managed care, my father would occasionally trade goods for services. It was not uncommon for my father to come home with a cooler full of shrimp, which he exchanged for his services. I strive to be just like my parents every day in my interactions with patients and team members.

What do you like most about your job?
Team building with the BH team and providing clinical care to children and their families. 

What do you like most about living in Pittsburgh?
Admittedly, we love the food.

Do you have any pets?
Too many. Three cats (Grey cat, Mittens and Biscuit), 3 fish tanks filled with fish, one rambunctious dog named Ruggles and a Beta fish named Silkie.

Do you have any hobbies?
Does shopping count as a hobby? Seriously, we enjoy tennis, birdwatching and more recently, fishing.

What is your favorite sports team?
Prefer individual sports: Roger Federer is my favorite tennis player.

Who is your favorite musician?
Coldplay

With what superhero do you identify? Do you have superpowers?
I really don’t have a favorite superhero nor do I have grandiose delusions about my abilities.

If you were stranded on a desert island, what three items would you bring?
1) Bowl 2) Fire starting device 3) Machete (I’ve watched too many episodes of “Naked and Afraid”!)

If you were given a $1 million check to give to one group or charity – other than The Children’s Institute – who would get it?
Tough question. I think “World Vision” as I believe in the mission and the work of this organization.

What has been your strangest job?
Worked one summer (lasted about 2 weeks) with an organization called “Clean Water Action”- going door to door asking for donations. I think I decided to be a physician after that job.

What do you want to do when you retire?
Work at T.J. Maxx, opening up the boxes when they come off the truck!

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Handstamp Project Visits The Children's Institute

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

Karen Miyazawa left her native Japan in April and is traveling the world for 13 months collecting handprints of children with special needs. The goal? To present a mosaic of the colorful collection at the Paralympic Games in Tokyo in 2020.

She recently arrived by Megabus in Pittsburgh. The day after her arrival, she made her first print-collecting trip – to The Children’s Institute of Pittsburgh.

“I’ve been through San Francisco, Oregon, Michigan, New York,” said Karen, 18, a recent high school graduate in a “gap year” who came to the U.S. after initial trips to Brazil and Peru. “Meeting with children is great, in so many ways. I can learn so many things from children.”

Karen will be meeting lots of them. She and others in the project aim to collect 100,000 handprints for the mosaic. They have collected more than 3,000 so far.

“It’s really cool to know she’ll have her hands with other kids who’ve experienced their own struggles,” said Jennnifer Schleich, as her daughter Guinevere, 4, an inpatient here, dipped her palm in yellow ink. “You don’t realize, at 4, they’re going to make something that’s part of a larger community.”

Karen is spending her time in Pittsburgh with Dr. Jane Breck, a professor of pediatrics at the University of Pittsburgh School of Medicine. They planned to visit about six or seven schools and agencies that serve children with special needs.

“Her parents said she could do this as long as she stays safe and secure,” said Dr. Breck, who connected with Karen through a former Pittsburgh neighbor, who is Japanese and now lives in California. “[The Children’s Institute] is our first so this is special. This is a privilege!”

Karen’s next stop after Pittsburgh? Europe, she said. Then, to Africa.

“It’s pretty adventure-y,” Karen laughed, as an assisting staff member told a blue-inked boy “You’re handprint is going to Japan; it’s like you’re going to Japan!”

“Meeting new people is real exciting,” she said.

To learn more about the project, visit www.facebook.com/handstampproject/

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Annual Brain Injury Reunion Picnic Unites Patients with Similar Stories

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

Cake at the Brain Injury Reunion Picnic
Mary Carr said the reason she and her son, Michael, keep coming back to special events at The Children’s Institute of Pittsburgh, even though Michael is no longer a teenage inpatient, is simple.

“We go in hopes to maybe see other people that have been in the same situation as us,” said Mary, whose son had a traumatic brain injury and was treated at The Children’s Institute nine years ago.

About 60 former brain injury patients and their families joined staff and friends at the Fifth Annual Brain Injury Reunion Picnic on August 12th at The Children’s Institute, taking part in summer fun with some familiar faces. There was good food, face painting for the kids and two former patients, Ivory Heard and Diana Lozinger, spoke at the picnic about their course of care and their lives now. Read More...



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