Since then, Anthony has yearly follow-up appointments with Dr. Scott Bartlett and a team of cranio-facial specialists at CHOP to monitor his progress. Jen said Dr. Bartlett had told her that Anthony might be able to undergo a procedure to improve the appearance of the area where his ear was missing.
She wasn’t in a big hurry to do the surgery, mainly because it wasn’t something she thought needed to be “fixed.”
The CHOP doctors are one of the few places in the country trained in MEDPOR ear reconstruction, a procedure developed by a Beverly Hills plastic surgeon that uses a plastic implant attached using the patient’s own tissue.
For Anthony, doctors would mold the implant from his fully formed ear, take some tissue from his scalp that would serve as a kind of living glue and stitch the implant into this tissue and onto the side of his head. Then they would take some additional skin from his groin and stitch that over the implant to make it look more like a real ear.
Jen went ahead with the procedure for Anthony on Nov. 21. The surgery took seven hours, and he was in the hospital for two days, leaving in time to be home for Thanksgiving.
Two weeks later, the protective mold came off and she was able to see his new ear for the first time.
“Even though they try to prepare you for everything involved, it doesn’t completely prepare you,” Jen said. “I was expecting to see a perfectly formed ear, but it was swollen and bruised. It didn’t look like an ear at that point.”
There were a couple of setbacks requiring two additional surgeries – one in December and another in February.
“He’ll grow into it,” Jen said.
Still, it’s been a stressful time.
“Living through it and watching him go through it, it takes a toll on me,” Jen said. “There were times I thought the implant was failing. I was doubting myself.”
During a recent physical therapy session, Anthony was more than willing to stop for some pictures. He was still the same bouncy little boy. The process doesn’t seem to have changed him, even if he understands that he is changed.
“At one point, we finally talked about it,” Jen said. “I said, ‘That’s your ear.’ And he said, ‘That’s my ear? For me?’ And I said, ‘For you.'”
She turned back to watch as Anthony continued with his therapy session, taking one more step on the long journey to realizing his fullest potential.
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His mother Mandy was feeling anxious about what she was seeing with her son. Thomas was talking by the time he was 3, but there were problems.
“He could speak short sentences, but he was pushing his words together and I couldn’t understand him,” Mandy said.
He had the vocabulary, but he struggled to get the words out. And then he would get frustrated or would act silly to redirect, his mom said.
After checking with their pediatrician and with their therapist at IU-13, she decided she wanted private therapy.
“So we came to Schreiber,” Mandy said.
They started working with Katie, who noticed something right away: Thomas was talking too fast.
“When he came in, he was hard to understand,” Katie said. “He talked really fast. He was making articulation errors, grammar errors. He was using wrong verbs. The first rule we had was: Slow down.”
Mandy said it was like she flipped a switch.
“By the third session, he was a different kid,” she said. “She gave him the tools in three sessions to make him just relax. She gave him the reassurance and the confidence to slow down.”
His problems aren’t as complex as some of the kids Katie sees. There’s no underlying diagnosis other than speech and language delay. And while each child is unique, it’s fairly common to see kids with language delays, Katie said. T was evaluated before he came to Schreiber, and that therapist recommended services.
“Sometimes, kids need services to correct those things,” she said. “Based on the great progress he has already made, starting therapy was a good choice.”
Thomas has a specific set of therapy goals. He’s learning to read cues so he’s aware when people have trouble understanding him. He’s working on the difference between past tense and present tense.
“He might say ‘we eated pizza’ or ‘we go to the store’ when he meant ‘we went to the store,'” Katie said.
He’s working on a couple of specific sounds that give him trouble, like making sure an “L” sound doesn’t slip into a “W.”
And, of course, he’s trying to take it slow.
Mandy said the difference is huge.
“He’s proud of his behavior,” she said. “He’s a storyteller, and he’s funny. He’s able to use words to make a joke. He’s T now – the T I always knew he would be.”
And she gave Katie and Schreiber all the credit.
“They are magicians,” Mandy said. “And that’s not everywhere. Even in the medical community, that’s not most places. This place is special.”
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Beginning in infancy, LJ’s guardians noticed many delays in his development, and he was referred to Schreiber by a local psychologist. He began his time at Schreiber in OT about a year and a half ago. LJ recently began receiving speech therapy with Jeremy Ewell, who is helping LJ learn social cues and improve his focus. Jeremy noticed LJ’s difficulty in concentrating and staying on task and developed strategies to improve his level of focus.
By frequently switching tasks and using a visual calendar, LJ is able to better process what his end goals are, giving him more incentive to remain focused. This is just one example of the many tactics Jeremy uses to build LJ’s cognitive progression. But it doesn’t seem like work to LJ, Kathy said. He starts every Wednesday saying: “Today is my day to see Mr. Jeremy!”
In spite of his challenges, Kathy Steibnaecher, his grandmother, describes LJ as a happy, music-loving 5-year old.
“He loves Mickey Mouse, Captain America, Winnie the Pooh, swimming and trucks,” Kathy said. “He’s always quick to tell us he loves us, say thank you, and share… He’s an amazing little guy!”
In his time at Schreiber, Kathy has noticed significant improvements with LJ. Even though he still struggles to interact with other children, LJ is now able to play alongside them. Parallel play with others is a large stepping stone for LJ for the end goal of socialization, Jeremy said. Kathy has also noticed the progress LJ has made with his focus.
LJ’s type of autism allows him to understand and follow directions, and he is capable of other kinds of communication, placing him socially ahead of many kids with autism.
“He has a lot going for him,” Jeremy said.
Jeremy’s work with LJ is a good illustration of how our therapists team up with parents and guardians to give families the tools that allows kids to practice at home the skills they learn at Schreiber.
At Schreiber, our average reimbursement rate is 42 percent. That means for every $100 in charges we submit to insurance companies, we receive, on average, $42 in payment. Please support our work so that we can continue to provide services to LJ and the thousands of other children we see each year. Just visit our Giving page here, and make your donation today.
This is where AMBUCS comes in. AMBUCS is a national nonprofit “dedicated to creating mobility and independence for people with disabilities,” according to its website.
Most of the work nationally and locally involves helping families obtain Amtryke therapeutic tricycles. And that’s why Howard Livingston and Bruce Schmoyer visited Schreiber Monday morning.
Howard and Bruce are two longtime Lancaster AMBUCS volunteers, and they stopped in to assemble a new bike for Elizabeth Owens and her son, Dorian. They live in New Holland.
Dorian was born with hydrocephalus. While he was still in utero, fluid developed inside his skull. The resulting pressure caused brain damage that left Dorian with ataxic cerebral palsy, seizure disorder and deafness.
He has been coming to Schreiber since he was 2; he’s 16 now. He receives all three therapies here, including physical therapy with Laurie Panther.
She said if a child can propel the bike on their own or if riding helps him or her with their endurance or strength, they are a candidate to receive one of the bikes.
Laurie surprised Dorian with the bike that Howard and Bruce had just finished putting together. His eyes lit up when he saw it.
“This is a big deal for him,” his mom said as Dorian wheeled his new bike through Schreiber’s hallways. “It’s good for his coordination and his core muscle strength. And the biggest thing is the feeling of independence. This will be his bike for him to ride on his own at home.”
Laurie knew Dorian would be excited.
“We ride the bike we have every week here,” she said. “He asks to ride it. It’s his favorite thing to do. Being able to surprise him with it today was pretty cool.”
AMBUCS pays for them. A family or an organization such as Schreiber will put in the request. AMBUCS reviews the request and, if approved, orders the bike from Amtryke.
“We were (buying) about two or three a year up until about a year ago,” Howard said. “The local group decided we needed to ramp it up. We said we could do better. We bought 12 bikes just through our chapter in the past year.”
AMBUCS funds its local bike buying program primarily through an annual art auction, Howard said.
This was the fourth time Laurie has arranged for a family to receive one of the bikes, she said. It doesn’t get old.
“This was a huge deal for me today,” she said. “Most kids like riding a bike. This gives them the ability to ride just like their friends or their brothers and sisters. We’ve had kids go on bike rides with their family for the first time instead of being pulled in a trailer.”
Mom is probably already planning that first family ride with Dorian.
Sophia has cerebral palsy and struggles to control her body movements. Gaining muscle strength and control is important for her, as this will help her stand and walk. Because it is hard work, physical therapy is Sophia’s least favorite activity. The therapist has started working on relaxing techniques that will also help with movement control. Sophia’s mother helps her exercise and stretch during the therapy sessions.
“I’m right there with her,” Kelly says. “The best way for parents to help their kids is to be involved here. Therapy is only once a week, so you have to work on these things at home if your child is going to progress. Each month I come away learning something new.”
Kelly knows that with constant work Sophia will gain greater mobility and the skills necessary to live a better life. Sophia is able to move her own wheelchair to get around and has positive interaction with her peers at school. As she learns to better control her movement and speech it will improve her ability to communicate and interact with those around her.
Sophia’s condition requires more than one type of therapy. At Schreiber, Sophia is able to work on her gross and fine motor skills, develop her speech articulation, and learn important social skills.
During speech therapy, Kelly watches Sophia through an observer’s window.
“She’s come a long way with her speech.” Kelly says. “I learned different ways to help her make sounds that she has trouble pronouncing from watching the therapist work with her here.”
Kelly plans to enroll Sophia in Schreiber’s summer camp program and looks forward to meeting other families that may have children who will become playmates for her daughter. One way she hopes to develop relationships is through a newly formed parent support group. The group, which plans to meet monthly, was formed by parents who want to network, encourage and connect with other families experiencing similar challenges.
“I’m glad we’re at Schreiber because there aren’t a lot of places that offer this kind of support,” Kelly says. “Everything she needs is right here. And all the therapists show concern for Sophia and for us as a family.”
Tiberius “Ty” McCabe
Age: He turned 6 in December
Diagnoses: Pierre Robin Syndrome, Pterygium Syndrome, hearing impaired, speech and language impaired
Grade and school: Schreiber S.T.A.R.S. Preschool
Parents: Kevin and Margaret McCabe, Lititz
Siblings: Delaney, 12
Favorite activities: Playing with Delaney; playing with trains, tractors and monster truck toys; playing ABC Mouse and tabletop games with the nurses; video games
Favorite food: Pudding
What he watches and listens to: On TV, he likes “Magic School Bus,” Mr. Rogers, and SpongeBob; for movies, he likes the “Air Bud” series; favorite song is “The Wheels on the Bus”
When he grows up he wants to: Be a pilot or drive monster trucks
Three words to describe him: Outgoing, determined and happy
For the Ambassador photo shoot, Ty McCabe came prepared. He rocked the white hat and black bow tie. When it was his turn, he plopped down in the comfy chair and faced the camera, his whole demeanor saying: “I’m ready. Let’s do this.”
That’s Ty: spreading smiles and good vibes whenever he comes to Schreiber. Which, as it turns out, is a lot. He’s here for preschool, and he receives physical, speech and occupational therapy.
He was born with a couple of different conditions: Pierre Robin Syndrome, which left him with a smaller-than-normal lower jaw, issues with his tongue and feeding problems; Pterygium Syndrome, which carries several symptoms but primarily affects his joints and bones; and he has hearing, speech and language impairments.
During therapy and at home, he works on stair climbing, bike riding and dressing himself. He practices fine motor skills like writing, using scissors and feeding himself. He’s trying to improve his speech and his signing skills. Since he started at Schreiber, he has learned to walk without a walker, is able to form some words and is eating Stage II foods, the thicker, chunkier foods that replace purees.
“(He is preparing) for mainstream education at the highest functional level of independence,” his mom Margaret says. “We have seen academic improvement despite many hospitalizations, surgeries and medical appointments.”
Age: He turns 12 in August
Diagnosis: Deaf and childhood speech apraxia
Grade and school: Fifth grade, John Beck Elementary School
Parents: Wendy Williams and Karl Lodwick of South Lebanon Township, Lebanon County
Siblings: Graham has an older brother Reese, 14
Favorite activities: Playing with pets, playing video games, bowling and riding his bike
Favorite food: Pizza
What he watches and listens to: “Drake and Josh,” “Minions,” the song “The Best Day of My Life” by American Authors
When he grows up, he wants to: Be a car designer
Three words to describe him: Happy, silly and loving
Graham has been coming to Schreiber for speech therapy since he was 6. Dorlas Riley, Schreiber’s lead speech therapist, diagnosed Graham with speech apraxia. The condition is defined this way by the American Speech-Language-Hearing Association: Graham knows what he wants to say, but his brain has difficulty coordinating the muscle movements necessary to say those words. He’s also deaf and has a cochlear implant.
So in his twice-a-week therapy at Schreiber, he practices his speech sounds and works on listening to get the best use of his cochlear processor. He’s also working on talking in complete sentences. The work is paying off. When he started with Dorlas, he communicated entirely by signing.
“(Now), he can carrry on a conversation with someone who does not use sign langugage,” says his mom Wendy.
It takes a lot of effort to make that kind of progress. But his therapy with Dorlas doesn’t seem like work.
“He loves it,” Wendy says. “Even after six years, he still looks forward to coming.”
Age: She turns 5 on March 28
Diagnosis: Cerebral palsy
Parents: Kelly and Adam Clay of Manheim Township
Favorite activities: Playing with her toys, going to the beach, watching movies on her iPad, riding her bike around the neighborhood and seeing plays at local theaters.
Favorite foods: Pizza and ice cream
What she watches and listens to: Disney movies, “Doc McStuffins,” “Sofia the First,” princess movies
Three words to describe her: Happy, outgoing and determined
What else to know about Sophia: She has a black lab named Dallas.
Sophia Clay and her mother, Kelly, attended a Schreiber board meeting late in 2015, and Sophia charmed the room with her smile and her spirit. Sophia’s cerebral palsy means she uses a wheel chair for a lot of her day. Her therapy at Schreiber is intended to help her be out of the chair more. “She’s working to become stronger in all areas of her life,” Kelly says. “She practices with a gait trainer so she can stand on her own. She works on sitting up without assistance. She practices her fine motor skill, her articulation and eating on her own.”
It’s the articulation — how clearly she speaks — where Sophia has shown the biggest progress, her mom says.
“Sophia’s language has come a long way,” Kelly says. “When she started, she could only say a few things. Now, she can say 10-word sentences.”
And that’s just the beginning. With her determination, she will be ready to make speeches in her class when she starts school.
How did Star Wars Week at Schreiber come to be?
Go here for a surprise.
“One of the biggest things Luke Skywalker had to do to be a Jedi,” Bernie says, “was to learn to control his reactions to frustration that would make him upset and angry activate the Dark Side. So we will be using that hook with many of the clients who are learning to conquer new daily routines that are hard, like tying shoes.”
That’s just the start of what Star Wars Week at Schreiber will offer.
“Jedi knights have to learn balance and core strengthening activities, so we will have the Jedi Training obstacle course,” Bernie says.
“Jedi knights learn how to use their abilities to positively sway others, we will be practicing social skills.
“Jedi knights learn other languages. We will have some select Yoda and Darth Vader expressions for the children to listen to and imitate.
“Of course there will be Storm Troopers to target, and we will be using our powers of observation and visual scanning as well to be aware of hidden dangers.”
The entire center will be turned into a Jedi Training Center to help celebrate Schreiber Pediatric’s 80th anniversary year this year. The multipurpose room will be the main area decorated in the Intergalactic mode, but already Speech Therapists have their lighting up and Physical Therapists have begun their decorations.
Update: Some folks from the Central Pennsylvania Avengers will be on hand Thursday afternoon, Jan. 28. Jason Johnson is director and founder of the group, which consists of adult hobbyists who dress up in superhero costumes and do appearances to entertain. Their motto is: “We came, we saw, we made smiles.” Expect to see a Kylo Ren, a Rey and a Darth Vader (non-scary variety) roaming the halls of Schreiber that day.
We have a better building. We obtained several substantial donations, including grants from the Stabler and High foundations, that allowed us to replace our aged HVAC system. We also replaced the plumbing, carpeting and repainted throughout the public areas. We managed this without having to spend one dollar from our operating funds.
We have better technology. After raising more than $85,000 in dedicated funds, we were able to completely overhaul our IT infrastructure. We replaced two aging, overloaded servers with two new servers. We updated our billing and scheduling software for the first time in 12 years, and we purchased new accounting software for the Finance Office.
We raised the bar on fundraising: One of the four main goals of the Schreiber Strategic Plan passed by the Board in September 2014 was to raise $1 million net on annual basis within three years. We reached our goal after one year through increases across all areas of Financial Development. We had the largest fundraiser in Schreiber’s history when our annual Phonathon, which only began three years ago, brought in more than $180,000.
We also hired staff in all therapy departments to keep pace with increased demand, and our rebranded daycare is filled to capacity. But here’s the most important thing to remember: Thanks to your continued partnership and support, we will continue to provide the life-changing services that are so needed within our community. We look forward to sharing more successes as we celebrate our 80th anniversary in 2016.
James DeBord is president of Schreiber Pediatric. Jon Hill is chairman of the board of directors.