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Families that Inspire

09/28/2015 02:54PM, Published by Hood Magazine, Categories: Family, Health, In Print, Today




By Jessica Brovold, ‘Hood Editor


In 2013, our then four-year-old daughter Kallie was diagnosed with brain cancer. It was the 

 most devastating diagnosis a parent could ever receive. Kallie was just a month shy of five years old; she was excelling in school and was a bubbly bouncy girl who enjoyed every moment of life. 


  

Two surgeries later, a long hospital stay and a trip to Boston for treatment, Kallie continues to recover. She’s now seven-years-old and loves first grade. She’s nearly two years cancer free and continues with MRI scans every three months along with hours of therapy sessions each week.

 

Her second surgery saved her life, but it would also bring many challenges. From having to help her re-learn to walk and talk, to doing basic things that used to come so easy for her, the journey hasn’t been easy. 


  

 When I think of families that inspire, I don’t think of my family. I think of so many others. When you are put in a situation like this, you do all you can to advocate for your child and give them the best possible chance to succeed in life. You go on adrenaline for days, weeks, months and years. You change in ways that are hard to describe.

 

In this issue, we’ll introduce you to some local families that inspire us. These families, like many others, have amazing stories to share and we hope they’ll inspire you.

 



----------------

Nieva’s Story

 

Imagine struggling for months, knowing something wasn’t quite right with your child. Several doctors appointments, unexplained symptoms including horrible fevers, swelling, dark under-eye circles and the energy of a normal two and a half year old, non-existent.

 

This is the beginning of Nieva’s story. It’s a story that comes with ups and downs and many moments of uncertainty.

 

“My husband, Jordon and I were both in such shock,” said Amanda as she remembers getting the dreaded news from doctors.

 

Nieva was diagnosed with Acute Lymphoblastic Leukemia in May of 2013. It was a day that changed Nieva’s family forever. But, it would get worse before it would get better for the Sioux Falls family.

 

 

“In April of 2015, with just three months left of her rigorous two year treatment regimen, Nieva contracted chickenpox,” said Amanda. “The chickenpox spread, her lungs failed and she was intubated and put on ventilators for nine days. We almost lost her.”

 

Nieva pulled through, but getting back to her old self would take time.

 

“When she came out of intubation, it took over a week for her to come back to us cognitively,” said Amanda. “We were dealing with a very rare and strange scenario.”

 

After struggles keeping the chickenpox at bay because of Nieva’s weakened immune system, integrative therapies and new medications helped clear things up in July of 2015.

 

Through this journey, Jordon and Amanda learned quickly that your adrenaline in a crisis like this would only last for so long.

 

“You are not superman and you are not superwoman,” said Amanda. “You will do everything you can all day, all night, as long as you can, but you can only do that for so long.”

 

Looking back and looking to the future, Nieva’s family is forever changed in many ways.

 

 “Our family used to always be rushing and very busy. But all the long hours added stress and unhealthy habits,” said Amanda. “We didn’t have time to eat right, exercise, keep the house clean, or interact much as a family.”

 

On diagnosis day the family crashed.

 

“I remember how meaningless stuff felt after Nieva was diagnosed,” said Amanda. “I’d walk through rooms and feel a deep knot forming.”

 

It was the realization that no possession could ever compare to Nieva. Since then, the family has worked on getting rid of excess items from their home. They’ve also altered work schedules. Amanda is a local photographer and has cut back on her workload and Jordon has done the same.

 

“I think as a family we feel we have been given a second chance,” said Amanda. “We’ve discovered what’s truly important.”

 

----------------

Caj’monai’s Fight for Life

 

Meet Caj’monai. She’s the twin sister to Cashmeire and a vibrant eight-year-old girl who thoroughly loves life. The past eight years of Caj’monai’s life have been anything but a breeze. Carrie, the girls’ mother remembers the journey well.

 

 

“Cashmeire and Caj’monai joined our family at 15 days old, said Carrie. “Cashmeire came home from the hospital on day 15 and Caj’monai needed to have open-heart surgery and a feeding tube placed so she was welcomed home at three months old. Although they are twins, Caj’monai was gifted with an extra chromosome that would educate us all on the blessings, as well as obstacles that would come with Down syndrome.”


  

Caj’monai had five hospital stays in her first year of life and many challenges each year after.

 

“Respiratory infections were life challenging,” said Carrie. “Hospital visits were long and gruesome, but Caj’monai always seemed to fight through them.

 

Her fight for life has paid off. She’s now a vibrant eight-year-old who goes to birthday parties with her classmates, is on top of the pyramids in her cheer squad and swims in the pool like a fish.

 

Travis and Carrie Geppert are parenting a blended family with nine children and while Caj’monai has some special needs, the couple say it’s about all of their children.


 “All of our children have unique needs,” said Carrie. “ Caj’monai’s needs might seem a little more obvious to others, but it’s important to recognize all of our children’s needs. The standards for a quality life should not changed based on a disability.”

 

When it comes to overcoming adversity, Carrie says there is always a silver lining.

 

“Every challenge is an opportunity to grow and build in strength and in character,” said Carrie. “It is a season of pain that no one ever wants to endure, but you’re always wiser in the outcome.”

 

And something she’s learned along the way is to always try to take up those offers for help.

 

“Lean on your support system. Others WANT to help,” said Carrie, “they just don’t always know how.  Rely on church, friends, family and co-workers.”

 

In the moments when you question your child’s future, Carrie has this to say.

 

“Don’t misjudge your child’s capabilities,” said Carrie. “I had no hopes of her eating on her own, walking on her own, or speaking with her voice.  Wow did she prove me foolish!”

 


 

---------------------

Colby’s Courage

 

At 10-years-old, Colby calls himself “unfortunately unlucky.”

His mom and dad, Dave and Stacy Jones, recall some scary moments when Colby was just a few months old.

 

“We learned that he had severe food allergies after he started to have reactions to food at daycare,” said Stacy. “The older he got, the more food allergies we uncovered.”

 

 Imagine making dinner for your family and trying to cook without many of the staple items most of us take for granted. The Jones family of Brandon has learned to adapt to Colby’s allergies, while keeping his younger sister, Karlee, happy too! Colby’s list of allergens is a long one. He’s allergic to dairy, egg, peanut, peas, raw pears and raw peaches. Doctors tell the family he may outgrow some of his allergies, but it is a long process and there are no guarantees.

 

Just when the family was in a routine with school and meal planning around Colby, there was another unexpected bump in the road.

 

“When Colby was in the first grade, we found out he had lost all hearing in his left ear,” said Stacy. “There was no hope of that hearing ever returning.”

 

The Jones’ did what many parents would do. They wasted no time in finding out what options were available to help their son hear.

 

“Our only option to at least help him was a Baha Implant surgery,” said Stacy. “The Baha captures sound on one side of his head and transfers the sound into a titanium screw in his skull and then through the bone over to his right ear.” 

 


While the device doesn’t restore hearing, it helps. It cannot be worn all the time, however, so the family is always making modifications to make sure he can hear.


Between Colby’s food allergies and hearing loss, Stacy says she’s learned a lot on this journey.


“I’ve learned to never assume,” said Stacy. “I never assume food is safe in any environment for my son, and I never assume others (especially teachers and day care providers) recognize and remember his hearing loss.”


And just because the family has a handle on the food allergies and has helped Colby adapt to his hearing loss, it doesn’t mean everything is back to normal. The Jones’ will always advocate for their son to make sure his hearing loss doesn’t negatively impact him as he continues to learn and grow.


“We fight a lot of misperception,” said Stacy. “Just because he can hear out of one ear, doesn’t mean it is just fine. It gets old when people say, “Well, at least he has one good ear!” You need two ears to hear effectively, and hearing will ALWAYS be a challenge.”



special needs families that inspire


  • Sanford Neuroscience Symposium, Fargo

    01/21/2017
    07:15AM — 04:00PM

    Information/Registration: 800-437-4010, LearningServices@sanfordhealth.org


  • Butterfly House Tai Chi

    01/21/2017
    09:00AM — 10:00AM

    If you are looking for a way to reduce stress, consider tai chi (TIE-CHEE). Tai chi is a graceful...


  • Little All Stars

    01/21/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Family Storytime

    01/21/2017
    11:00AM — 11:35AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Monster Jam

    01/21/2017
    01:00PM — 03:00PM

    Monster Jam® brings high-octane, motorsports entertainment to fans around the world. The action-p...


  • Bookworms Reading Program

    01/21/2017
    01:00PM — 02:00PM

    Bookworms Reading Program in the KELOLAND Education Center at the Great Plains Zoo. Join local ce...


  • Saturday Cookie Decorating Days

    01/21/2017
    02:00PM — 04:30PM

    Call us by Friday 605-978-0991 and you can come in and decorate cookies on Saturday! We do cookie...


  • Monster Jam

    01/21/2017
    07:00PM — 09:00PM

    Monster Jam® brings high-octane, motorsports entertainment to fans around the world. The action-p...


  • Butterfly House Yoga

    01/22/2017
    10:00AM — 10:50AM

    Bring your yoga mat for a one-hour session in the warm, lush Butterfly House. It's a peaceful, se...


  • Crafternoon Storytime

    01/22/2017
    02:00PM — 02:30PM

    Featuring stories, songs and a craft for families with children ages 2 to 6.


  • Little All Stars

    01/23/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Reading Day

    01/23/2017
    10:00AM — 10:30AM

    All ages welcome! 10 am and 2 pm.


  • Latches

    01/23/2017
    06:30PM — 08:00PM

    Breastfeeding takes a village. Nourish your baby in a safe, comfortable place, surrounded by your...


  • Toddler Time

    01/24/2017
    09:30AM — 11:30AM

    If they can walk, they can jump! Toddler Time at Sky Zone is a special time just for the little o...


  • Storytime Tuesdays

    01/24/2017
    10:00AM — 10:30AM

    Bring your kids to a storytime every Tuesday at Child's Play Toys. It starts off with a few songs...


  • Lapsit

    01/24/2017
    10:30AM — 11:05AM

    Delight and stimulate your baby with songs, stories and playtime. Get to know other families and ...


  • Kindergarten Round Up

    01/24/2017
    06:30PM — 07:30PM

    Giddy Up and join us for Kindergarten Round Up at Sioux Falls Lutheran School! - Christ Centere...


  • Babywearing 102 (SF Babywearers)

    01/24/2017
    06:30PM — 08:00PM

    Designed for more advanced babywearers, this support group will help guide babywearers in more ad...


  • STOMP

    01/24/2017
    07:30PM — 10:00PM

    STOMP is explosive, inventive, provocative, witty, and utterly unique—an unforgettable experience...


  • Little All Stars

    01/25/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Family Storytime

    01/25/2017
    10:30AM — 11:00AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Milk Monologues

    01/25/2017
    01:00PM — 02:00PM

    Join Shelly (CLC) or Sarah if you are the mom of a non-mobile nursing baby. One of them will be a...


  • Food is Good Medicine

    01/25/2017
    05:00PM — 06:00PM

    Food is Good Medicine Healthy food makes healthy people! Join us for a cooking series focusing o...


  • STOMP

    01/25/2017
    07:30PM — 10:00PM

    STOMP is explosive, inventive, provocative, witty, and utterly unique—an unforgettable experience...


  • Toddler Time

    01/26/2017
    09:30AM — 11:30AM

    If they can walk, they can jump! Toddler Time at Sky Zone is a special time just for the little o...


  • Little All Stars

    01/26/2017
    10:00AM — 10:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • New Baby & Me

    01/26/2017
    01:30PM — 03:30PM

    This group for new moms and their babies meets weekly. Moms can join in open discussion on topics...


  • Family Storytime

    01/27/2017
    10:30AM — 11:00AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Marty DeWitt Folk, Farm, & Family


  • Little All Stars

    01/27/2017
    06:30PM — 07:20PM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Space School Musical

    01/27/2017
    07:00PM — 09:00PM

    Location: Edith Mortensen Theatre, Augustana University This all-abilities children's musical wa...


  • Space School Musical

    01/27/2017
    07:00PM — 08:00PM

    This is the Center for the Arts sixth all-abilities production and the third children’s musical! ...


  • Sanford Neuroscience Symposium, Fargo

    01/21/2017
    07:15AM — 04:00PM

    Information/Registration: 800-437-4010, LearningServices@sanfordhealth.org


  • Butterfly House Tai Chi

    01/21/2017
    09:00AM — 10:00AM

    If you are looking for a way to reduce stress, consider tai chi (TIE-CHEE). Tai chi is a graceful...


  • Little All Stars

    01/21/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Family Storytime

    01/21/2017
    11:00AM — 11:35AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Bookworms Reading Program

    01/21/2017
    01:00PM — 02:00PM

    Bookworms Reading Program in the KELOLAND Education Center at the Great Plains Zoo. Join local ce...


  • Monster Jam

    01/21/2017
    01:00PM — 03:00PM

    Monster Jam® brings high-octane, motorsports entertainment to fans around the world. The action-p...


  • Saturday Cookie Decorating Days

    01/21/2017
    02:00PM — 04:30PM

    Call us by Friday 605-978-0991 and you can come in and decorate cookies on Saturday! We do cookie...


  • Monster Jam

    01/21/2017
    07:00PM — 09:00PM

    Monster Jam® brings high-octane, motorsports entertainment to fans around the world. The action-p...


  • Butterfly House Yoga

    01/22/2017
    10:00AM — 10:50AM

    Bring your yoga mat for a one-hour session in the warm, lush Butterfly House. It's a peaceful, se...


  • Crafternoon Storytime

    01/22/2017
    02:00PM — 02:30PM

    Featuring stories, songs and a craft for families with children ages 2 to 6.


  • Little All Stars

    01/23/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Reading Day

    01/23/2017
    10:00AM — 10:30AM

    All ages welcome! 10 am and 2 pm.


  • Latches

    01/23/2017
    06:30PM — 08:00PM

    Breastfeeding takes a village. Nourish your baby in a safe, comfortable place, surrounded by your...


  • Toddler Time

    01/24/2017
    09:30AM — 11:30AM

    If they can walk, they can jump! Toddler Time at Sky Zone is a special time just for the little o...


  • Storytime Tuesdays

    01/24/2017
    10:00AM — 10:30AM

    Bring your kids to a storytime every Tuesday at Child's Play Toys. It starts off with a few songs...


  • Lapsit

    01/24/2017
    10:30AM — 11:05AM

    Delight and stimulate your baby with songs, stories and playtime. Get to know other families and ...


  • Kindergarten Round Up

    01/24/2017
    06:30PM — 07:30PM

    Giddy Up and join us for Kindergarten Round Up at Sioux Falls Lutheran School! - Christ Centere...


  • Babywearing 102 (SF Babywearers)

    01/24/2017
    06:30PM — 08:00PM

    Designed for more advanced babywearers, this support group will help guide babywearers in more ad...


  • STOMP

    01/24/2017
    07:30PM — 10:00PM

    STOMP is explosive, inventive, provocative, witty, and utterly unique—an unforgettable experience...


  • Little All Stars

    01/25/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Family Storytime

    01/25/2017
    10:30AM — 11:00AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Milk Monologues

    01/25/2017
    01:00PM — 02:00PM

    Join Shelly (CLC) or Sarah if you are the mom of a non-mobile nursing baby. One of them will be a...


  • Food is Good Medicine

    01/25/2017
    05:00PM — 06:00PM

    Food is Good Medicine Healthy food makes healthy people! Join us for a cooking series focusing o...


  • STOMP

    01/25/2017
    07:30PM — 10:00PM

    STOMP is explosive, inventive, provocative, witty, and utterly unique—an unforgettable experience...


  • Toddler Time

    01/26/2017
    09:30AM — 11:30AM

    If they can walk, they can jump! Toddler Time at Sky Zone is a special time just for the little o...


  • Little All Stars

    01/26/2017
    10:00AM — 10:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • New Baby & Me

    01/26/2017
    01:30PM — 03:30PM

    This group for new moms and their babies meets weekly. Moms can join in open discussion on topics...


  • Family Storytime

    01/27/2017
    10:30AM — 11:00AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Marty DeWitt Folk, Farm, & Family


  • Little All Stars

    01/27/2017
    06:30PM — 07:20PM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Space School Musical

    01/27/2017
    07:00PM — 09:00PM

    Location: Edith Mortensen Theatre, Augustana University This all-abilities children's musical wa...


  • Space School Musical

    01/27/2017
    07:00PM — 08:00PM

    This is the Center for the Arts sixth all-abilities production and the third children’s musical! ...


  • Butterfly House Tai Chi

    01/28/2017
    09:00AM — 10:00AM

    If you are looking for a way to reduce stress, consider tai chi (TIE-CHEE). Tai chi is a graceful...


  • Little All Stars

    01/28/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Family Storytime

    01/28/2017
    11:00AM — 11:35AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Bookworms Reading Program

    01/28/2017
    01:00PM — 02:00PM

    Bookworms Reading Program in the KELOLAND Education Center at the Great Plains Zoo. Join local ce...


  • Saturday Cookie Decorating Days

    01/28/2017
    02:00PM — 04:30PM

    Call us by Friday 605-978-0991 and you can come in and decorate cookies on Saturday! We do cookie...


  • Butterfly House Yoga

    01/29/2017
    10:00AM — 10:50AM

    Bring your yoga mat for a one-hour session in the warm, lush Butterfly House. It's a peaceful, se...


  • Crafternoon Storytime

    01/29/2017
    02:00PM — 02:30PM

    Featuring stories, songs and a craft for families with children ages 2 to 6.


  • Little All Stars

    01/30/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Toddler Time

    01/31/2017
    09:30AM — 11:30AM

    If they can walk, they can jump! Toddler Time at Sky Zone is a special time just for the little o...


  • Storytime Tuesdays

    01/31/2017
    10:00AM — 10:30AM

    Bring your kids to a storytime every Tuesday at Child's Play Toys. It starts off with a few songs...


  • Lapsit

    01/31/2017
    10:30AM — 11:05AM

    Delight and stimulate your baby with songs, stories and playtime. Get to know other families and ...


  • Little All Stars

    02/01/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Family Storytime

    02/01/2017
    10:30AM — 11:00AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Milk Monologues

    02/01/2017
    01:00PM — 02:00PM

    Join Shelly (CLC) or Sarah if you are the mom of a non-mobile nursing baby. One of them will be a...


  • Babywearing Basics (SF Babywearers)

    02/01/2017
    06:30PM — 08:00PM

    Monthly on the first Wednesday


  • Toddler Time

    02/02/2017
    09:30AM — 11:30AM

    If they can walk, they can jump! Toddler Time at Sky Zone is a special time just for the little o...


  • Little All Stars

    02/02/2017
    10:00AM — 10:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Toddler Art Shape

    02/02/2017
    10:15AM — 11:00AM

    Toddler Art: Shape Celebration. Let’s talk about triangles, circles and squares! Learn about the ...


  • New Baby & Me

    02/02/2017
    01:30PM — 03:30PM

    This group for new moms and their babies meets weekly. Moms can join in open discussion on topics...


  • Family Storytime

    02/02/2017
    07:00PM — 07:30PM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Do you know your numbers?

    02/03/2017
    07:00AM — 07:00PM

    Get screened and enjoy a selection of health related booths and presentations. Health screenings...


  • Family Storytime

    02/03/2017
    10:30AM — 11:00AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Pavilion Free First Fridays

    02/03/2017
    05:00PM — 08:00PM

    Join us for Free First Fridays, whether you are new to the area, new to the Pavilion, or even a r...


  • Free First Friday

    02/03/2017
    05:00PM — 08:00PM

    Join us for Free First Fridays, whether you are new to the area, new to the Pavilion, or even a r...


  • Little All Stars

    02/03/2017
    06:30PM — 07:20PM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Open Gymnastics

    02/03/2017
    07:00PM — 09:00PM

    Need a little extra time to practice? Open Gymnastics is class time for gymnasts to practice and ...


  • Mall Walk

    02/04/2017
    08:00AM — 12:00PM

    Walk ‘N Roll for LifeScape on this first Saturday morning in February! Festivities start at 8:00,...


  • Butterfly House Tai Chi

    02/04/2017
    09:00AM — 10:00AM

    If you are looking for a way to reduce stress, consider tai chi (TIE-CHEE). Tai chi is a graceful...


  • Little All Stars

    02/04/2017
    09:00AM — 09:50AM

    -Ages: Walking - 6 years -10 punches per card -Cards do not expire


  • Birthing with Confidence: All Day Session

    02/04/2017
    09:00AM — 04:00PM

    The All Day Session is designed for the family with a busy schedule. It is a condensed version of...


  • Mall Walk

    02/04/2017
    09:30AM — 10:15AM

    Festivities start at 8:00 a.m. with aerobics warm-up at 9:15. The walk starts at 9:30. Sponsored ...


  • Lapsit

    02/04/2017
    09:30AM — 10:00AM

    Help your baby develop listening and language skills with songs, stories and playtime. Get to kno...


  • Babywearing 101

    02/04/2017
    09:30AM — 10:30AM

    Monthly on the first Saturday


  • Cloth Diapering 101

    02/04/2017
    09:30AM — 10:30AM

    Monthly on the first Saturday


  • Saturday Science Club

    02/04/2017
    10:30AM — 12:00PM

    Join us as we engineer a new Zoo exhibit! Discover how we use science and math to balance the nee...


  • Family Storytime

    02/04/2017
    11:00AM — 11:35AM

    Stimulate early learning with books, rhymes, music and movement at this drop-in program.


  • Bookworms Reading Program

    02/04/2017
    01:00PM — 02:00PM

    Bookworms Reading Program in the KELOLAND Education Center at the Great Plains Zoo. Join local ce...


  • Breastfeeding 101

    02/04/2017
    01:00PM — 02:00PM

    Monthly on the first Saturday


  • Saturday Cookie Decorating Days

    02/04/2017
    02:00PM — 04:30PM

    Call us by Friday 605-978-0991 and you can come in and decorate cookies on Saturday! We do cookie...


  • Decadence in Chocolate

    02/04/2017
    07:00PM — 09:00AM

    Plan to spend your evening with us for wine, chocolate, and dancing to raise money for our 19 pro...



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