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A Lesson in Acceptance - Evelyn & Carrie Zak

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Apr, 2019

As a former elementary school teacher and mother of three young children, 34-year-old, St. Joseph resident Carrie Zak has spent much of her time educating others. When the birth of her third child, Evelyn, turned out differently than expected, Carrie began preparing her family with the necessary tools to educate and advocate for differences of any kind.

Carrie’s third pregnancy began very uneventfully.  “It was a smooth, easy process,” said Carrie. “My third baby was the easiest one!”

The smooth sailing continued even through labor and one hour after arriving at Lakeland Medical Center in St. Joseph Evelyn was born. Twelve hours after giving birth, the pediatrician informed the Zak family that Evelyn was showing indications of Down syndrome - a genetic disorder caused by an extra copy of  chromosome 21.   

“The news was a shock at first, it was something we hadn’t prepared for,” said Carrie.

Doing what she does best, Carrie began educating herself about the condition and the medical care that would be needed. Two weeks following her birth, Evelyn began physical therapy at Lakeland Rehabilitation. During the therapy sessions with physical therapist, Hannah Brooks, PT, they focused on improving motors skills and growth delays associated with her diagnosis.

Unrelated to her condition, Evelyn also developed a tight muscle on the right side of her neck, which caused her to lay on her left side of her head more often. The added pressure on her soft skull created irregular shaping of her head, known as plagiocephaly, or a flat spot. If left untreated treated, a flat spot can lead to jaw alignment issues and has been linked to developmental delays, hearing, and vision issues.

Over the next four months, Evelyn’s flat spot continued to grow. Hannah referred Evelyn for a consult with certified orthotist and prosthetist, Pete Kapelke, CPO, from Mary Free Bed Orthotics & Prosthetics.

At her six-month checkup, Evelyn’s condition had become severe enough that cranial helmet therapy was suggested. The helmet would help gently correct the shape of the skull slowly over time to avoid future health issues. Through this partnership with Mary Free Bed Orthotics & Prosthetics, Pete also sees patients locally at Lakeland Rehabilitation and Evelyn was fitted for a helmet in the same building as her therapy care. Her helmet was available within two weeks and would be placed in time for her next major growth spurt which would decrease the amount of time she would need to wear it.

Pete and the care team from Mary Free Bed at Spectrum Health Lakeland evaluated Evelyn’s progress over the next several weeks.

“Pete was very personal, explained things in great detail, and even provided us with information for any additional questions” said Carrie.

Evelyn would need to wear the cranial helmet 23 hours a day for the next four months. Since the helmet would be such a big part of Evelyn’s life, Carrie reached out to a friend who is a local artist to have the helmet hand painted with glitter and bright flowers.

“It really draws a lot of attention but that’s alright - it gives us a chance to talk about it,” said Carrie. “Having your child wear a helmet is really harder on the parents than the kids.”

Just five days into her therapy, Evelyn was comfortably wearing her helmet 23 hours a day.

“Our therapy team was great. They provided a schedule to help us adjust, shared information on how to clean it, and how to care for Evelyn while she was wearing it,” said Carrie. “Evelyn adjusted so quickly.”

“We call her our unicorn baby. She’s just magical and our amazing gift. She’s got this adorable little mohawk that sticks straight up and out of her helmet.”

Since beginning cranial therapy, the Zak family has seen drastic improvements in the reshaping of Evelyn’s head.

“Cranial therapy has been a good experience. A lot of people ask questions and I love educating people on something that’s helping enhance my daughter’s life,” said Carrie.

With Evelyn’s therapy almost complete, the Zak family is looking forward to uninterrupted cuddling time and Evelyn’s next adventures. Evelyn is just like any other happy child. She enjoys tummy time, playing with toys, and spending time with her mom, dad, brother, and sister.

“She is teaching us to live in this moment and not to worry about tomorrow,” said Carrie. “We are taking things one day at a time and trying not to get too far ahead of ourselves.”

 

Experience more of the Zak family's story at spark.adobe.com/page/n6CpdUuGpt7bV/

  

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