The Children's Institute Blog

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.”


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!


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 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?

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?

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!


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


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...

From Paralysis To Golfing: Battling Guillain-Barre Syndrome

Posted by The Children's Institute - Aug 16, 2017

On Sunday, April 30, 2017, Jonathan Wallowicz went to the hospital because he felt tingling in his hands and feet. Three days later, he was paralyzed from the shoulders down. Five days later, he was on a ventilator.

But on Wednesday, July 19, 2017 – after an intensive inpatient battle with Guillain–Barré
Syndrome, a rapid-onset muscle weakness caused by the immune system damaging the nervous system – Jonathan walked out of The Children’s Institute of Pittsburgh on his own two feet.

“There’s an overwhelming gratefulness we feel – we feel blessed,” said Tracy Wallowicz, Jonathan’s mother. “He’s made progress already that we thought would take much, much longer. This environment and the care he has been given is exactly what made the difference.”

Jonathan came to The Children’s Institute after a two-week stay in Allegheny General Hospital’s neuro-intensive care unit. His stay at Allegheny General was preceded by a three-week stay in the neuro-intensive care unit at Miami Valley Hospital in Ohio, near where the 19-year-old native of Seven Fields, Pa. was completing his freshman year at the University of Dayton. When he arrived here, he had a tracheotomy, was still vented and was being tube-fed. He had lost 50 pounds. He hadn’t been able to speak in weeks and communicated only by having his lips read.

“The Monday after I got here, they took the trach out,” Jonathan said. “Two weeks later, I started to stand.”

There was a lot of intense therapy, though, that led to those improvements, stressed Jonathan and his occupational therapist, Leslie Paat.

“The hardest part of therapy was just working on sitting up when it was painful, getting lightheaded,” Jonathan said. “Same with standing. You just want to stop after 30 seconds – it’s hard.”

“It’s all him,” Leslie said. “Jonathan is extremely motivated and goal-oriented. He’s extremely disciplined. He’s very driven. He has a supportive family … and that’s why he is where he is.”

Jonathan said he “can’t even imagine” what his older brother, 20, and younger sister, 17, were thinking about as they watched him fight with Guillain–Barré. “[When I went to the hospital] I thought it was Lyme’s Disease. I’d never heard of Guillain–Barré,” he said. “I thought I was going to get a steroid from the emergency room.”

Now that he’s walking and going home, Jonathan has a few other things on his mind: finishing up his spring classes, returning to school and playing golf.

“That was his goal on the first day: he wanted to golf before the end of summer,” Leslie said. “I think he’s well on his way.”


Osteopathic Manipulative Treatment (OMT)

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

Osteopathic manipulative treatment, or OMT, is hands-on care that can treat many conditions including chronic pain, migraines and acute injuries. During a session, an Osteopathic physician will use his or her hands to diagnose, treat, and prevent illness or injury, move muscles and joints, and stretch different areas of the body. The treatments are targeted to your specific needs.

Tess Mervis is the ideal candidate for OMT. The 17-year-old Pittsburgh resident has Reflex Neurovascular Dystrophy (RND) and suffers with chronic pain in her neck and back.

“I always had really bad migraines when I was a kid but I really started experiencing the pain and the weakness last August. I had a concussion, and I think that worsened everything,” Tess said. “OMT has been helping. I get really, really stiff in my back and there’s usually nothing I can do about. Dr. Burg really helps my headaches and stiffness.”

“I’ve been practicing OMT for 12 years now. OMT is a very safe and effective treatment option for many conditions,” Dr. Burg said. “For my patients, I have used it to successfully treat migraines, back pain, neck pain, rib pain, muscle pain, joint pain, and stiffness. Also, I often use OMT as an adjunct therapy along side of other treatments to provide patients with a multifaceted treatment plan, which they often need. “

Osteopathic medicine, founded in the late 1800s, provides all of the benefits of modern medicine including prescription medications, surgery, and the use of technology to diagnose disease and evaluate injury, according to the American Association of Colleges of Osteopathic Medicine (AACOM).

It also offers hands-on diagnosis and treatment through OMT and emphasizes helping each person achieve a high level of wellness by focusing on health promotion and disease prevention.

An important principle of Osteopathic Medicine is the body’s ability to heal itself, AACOM said. Many of the techniques and practices reduce or eliminate road-blocks to proper structure and function, so the self-healing mechanism can assume its role in restoring a person to health.

Want to learn more about OMT or schedule an appointment with Dr. Burg? Call 412-420-2463 today!


Donor Profile: ​Ray Wojszynski

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

Photograph of Ray Wojszynski Volunteering At The VA HospitalRay Wojszynski’s life as a donor and an aspiring drummer are inextricably linked.

He’s been drumming on and off since his youth – he later sold his first drum kit to a Westinghouse employee who gave him the lead that ultimately lead to a job at the company he held for 32 years. But the real synergy started in 2015, after he underwent chemotherapy for lymphoma and, looking for a past-time, was inquiring about upgrading a four-year-old electronic drum kit.

“Instead of selling it or trading it in for a new set, I donated it to the Western Pennsylvania School for Blind Children,” Ray said. “Then, later, I thought maybe they could use something else. I met Roger Thomas, their music director, at ‘N’ Stuff in Blawnox and said, ‘Pick whatever you want.’” Thomas picked two, 88-key electric pianos, with stands and benches.

Ray’s first donation to The Children’s Institute of Pittsburgh was uncharacteristic, a transport chair he bought for his wife, who was battling ovarian cancer, to use at the polls for the U.S. presidential election. She never used it, and died three days before their 30th wedding anniversary in November 2016.

Every donation to The Children’s Institute since then has centered around music.

He just began giving in January and, while he’s made significant contributions, the impact is priceless. He has donated in-kind gifts – a violin, a special IPad switch for interface with instruments, a guitar chord learning system, a guitar amp, and bongo drums. He’s paying the salary of a teacher who will provide drum lessons to students. And he’s funded two Café Concerts for Day School students and one full year of music therapy, extending to June 2018.

“You see a lot of children with special needs, with multiple disabilities – I want to do something to make a difference in their lives and music can make that difference,” Ray said. “I’m happy to do it.”

He plays drums in a makeshift studio in his Plum house. And maybe soon at a church near you. His church’s organist asked him to sit in behind the kit during a rehearsal session.

“I said, ‘I could do that, I could keep the beat!’” he laughed. “So my drum teacher said, ‘You should absolutely do that, 100 percent.’ I’m thinking about it.”

In the meantime, he’s keeping busy as a donor and volunteer. In addition to supporting The Children’s Institute, the School for Blind Children, St. Anthony’s Schools and others, he volunteers every week at the VA Hospital in Aspinwall, playing dominoes with veterans and tending to the small – but necessary – details of their lives.

“I go over and I have a supply cart filled with donated supplies,” Ray said. “I take that room to room. And I try to give them what they need. And, if the cart doesn’t have it, I’ll buy it and donate it.”

He’s looking for more volunteer opportunities. And, as ever, there are the drums.

“My whole goal with playing drums is independence – doing something different with all four limbs,” he said. “It’s something that’s a lifelong thing.”


Doctor Spotlight: Tim Burg, DO

Posted by The Children's Institute - Aug 09, 2017

Name: Tim Burg
Title: Physiatrist

When did you start working at The Children’s Institute? Summer 2015.

Where did you grow up? Pittsburgh (Penn Hills/Plum).

As a child, what did you want to be? A brain surgeon/famous actor.

Where did you go to school? Penn State for undergrad, LECOM for medical school.     

What inspired you to go into your field of study? Dr. Mary Ann MiKnevich, a local physiatrist who is probably the best in the world.

What do you like most about your job? The ability to spend time with my patients so that I can get to know them and help them get to the bottom of their problems.

What do you like most about living in Pittsburgh? The fact that my family and friends are here.

Do you have any pets? No, unless you count my two kids.

Do you have any hobbies? Running and vegetable gardening.

What is your favorite sports team? The Mighty Penguins.     

Who is your favorite musician? Flea from The Red Hot Chili Peppers.     

With what superhero do you identify? Do you have superpowers? Spiderman, because he is athletic and nerdy! I can heal with my hands!! As an osteopathic physician, I am able to diagnose, treat, and prevent illness with a hands-on type of care called osteopathic manipulative treatment. 

If you were stranded on a desert island, what three items would you bring? Magnesium flint stick to start a fire, a knife, and a water purifier!

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? The National Institute of Drug Abuse, because addiction is plaguing our youth possibly more than any other disease and we as a society need to be more aware and open about it.

What has been your strangest job? Driving an old beat-up box van to pick up and deliver Christmas trees for my uncle and grandfather! The van would break down, and I had to climb underneath it and hit the alternator with a wrench to get it running again!!! Miss you Nanu.

What do you want to do when you retire? Learn how to scuba dive, and do it all over the world!


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