Zoe's Story - A Little Girl Living with Cystic Fibrosis

1
Meet Zoe

Photo © Scott Ose
Photo © Scott Ose

Zoe Ose is an adorable little girl with a captivating smile and big, beautiful eyes that are bursting with the passion, joy and innocence of a child who is just beginning to discover the wonder of the world around her. Zoe is also a little girl living with cystic fibrosis (CF), a disease that complicates an otherwise carefree childhood and threatens to rob her of the very life that she so passionately enjoys.

2
Zoe's Story

Photo © Scott Ose
Zoe and Jada, shortly after diagnosis. Photo © Scott Ose

Zoe’s parents, Scott and Jada Ose, first began to suspect something was wrong with Zoe when she had not regained her birth weight in her first two weeks of life. Zoe finally reached her birth weight when she was about 2 months old, but Scott and Jada knew that something was still very wrong. Every time Zoe ate, her belly would become hard and bloated, and she would scream in pain until what seemed like everything she had eaten would come right back out again in her diaper.

During Zoe’s first 10 months of life, Scott and Jada made numerous visits to the pediatrician’s office to discuss their concerns. When the pediatrician did not have an answer for Zoe’s symptoms, Scott and Jada did their own research and began to suspect that Zoe might have cystic fibrosis. Their pediatrician did not respond to their concerns, so Scott and Jada took Zoe to a children’s hospital for a second opinion. While there, on the day before Zoe turned 1, their suspicions were confirmed. Zoe did indeed have cystic fibrosis.

Zoe began receiving treatment at an accredited CF Care Center. Now, at the age of four, she has grown to an amazing 80th percentile on the growth charts. Life is not easy, and she still struggles with setbacks from time to time, but with a lot of hard work, Zoe is growing and doing well.

After Zoe was diagnosed, the other seven Ose children were tested. Two of the children, who are Jada’s biological children and Scott’s stepchildren, also have cystic fibrosis. They have a less severe mutation than Zoe, and fortunately, have only mild symptoms of the disease.

3
Zoe's Mealtimes

Photo © Scott Ose
Zoe having breakfast. Photo © Scott Ose

When she was first diagnosed, Zoe had a feeding tube in her nose that was used to feed high-calorie formula directly in to her stomach and help her grow quickly. Scott and Jada recall that they rarely slept in the three months that Zoe had the tube feedings — for fear that the tube might come out or get tangled around Zoe as she slept. They stayed close by her all night to make sure that Zoe got every precious drop of the nutrition that she needed.

Now Zoe eats regular table foods but must consume a large quantity of high-calorie, high-fat foods. Scott and Jada say that this can be difficult to accomplish when dealing with a 4-year-old’s appetite. Like most people with cystic fibrosis, Zoe also takes enzymes whenever she eats.

4
A Typical Day for Zoe and Her Family

Photo © Scott Ose
Zoe during one of her treatments. Photo © Scott Ose

Zoe takes bronchodilators and other medications commonly prescribed to those with CF. Zoe and Jada must make time for taking inhaled medications and airway clearance therapy several times each day. Sometimes Zoe uses a high-frequency chest compression vest for airway clearance, and other times Scott or Jada do manual chest physiotherapy. When Jada is not providing treatments to Zoe, she is busy caring for Zoe’s brothers and sisters whom she also homeschools.

Scott spends a lot of time on the road, as he drives about 150 miles to work each day and then 150 miles back home again to be with Zoe, Jada and the rest of the Ose family each evening. Scott must make this commute, because his employer (in Savannah) provides Zoe’s health insurance. The family must live in Jacksonville, though, to be near the CF center, where Zoe must go for medical care.

5
Scott and Jada's Advice

Photo © Scott Ose
Jada and Zoe at the children's hospital. Photo © Scott Ose

Through their own experiences and observing the experiences of others, Scott and Jada have learned a lot about parenting a child with cystic fibrosis. They offer the following words of wisdom for other parents in their situation:

6
Be Diligent in Following the Treatment Plan

Photo © Scott Ose
Zoe in her vest, clearing out her airways. Photo © Scott Ose

Scott says, “The most important thing any parent can do is to be disciplined enough to stay on a particular daily regimen. This is a must! A child with CF must stay as healthy as possible. By this I mean everything that they need: their enzymes, their meds, their breathing treatments and their chest physiotherapy (CPT).”

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Record Everything, Every Day

Photo © Scott Ose
Zoe getting another treatment. Photo © Scott Ose

Get a notebook or other system to keep daily records of important events. Scott and Jada document the time, amount and name of every medication and airway clearance treatment that Zoe takes each day. They also document the foods she eats, the enzymes she was given and detail the size, color, consistency and frequency of her stools. They document any symptoms that are out of the ordinary for Zoe, and they bring all of this information with them when they see the CF team. Scott and Jada say that these records provide valuable insight to help pinpoint the cause of problems when they arise.

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Remember to Take Care of Yourself as Well as Your Child

Photo © Scott Ose
Zoe out with her family. Photo © Scott Ose

You must stay strong enough to cope with the physical, psychological and financial stress of caring for a chronically ill child. You will also need to stay strong enough to meet the needs of your healthy children.

Scott and Jada have a big family, so they have had to get creative, finding ways to balance their time between meeting Zoe's needs and the needs of the rest of the children. They advise parents to get involved with a support group or network with other parents of children with CF.

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Don't Be Afraid to Question your Health Care Providers

Photo © Scott Ose
Zoe in the hospital. Photo © Scott Ose

Scott and Jada emphasize that, while it is good to trust your doctors and nurses, it is also important to remember that they can be wrong or make mistakes. Keep a watchful eye, and if something doesn't seem right to you, mention it. You know your child's routine better than anybody.

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Advocate for Cystic Fibrosis Research

Photo © Scott Ose
Zoe at a cystic fibrosis benefit event. Photo © Scott Ose

Scott and Jada believe that increasing awareness and supporting CF research are the most important things they can do as parents to help their daughter have a future. They have been very active in advocating for the needs of those with CF in the legislature, telling their story to increase public awareness and supporting the Cystic Fibrosis Foundation by participating in fundraising events and campaigns.

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