Wrap Buddies

by Kathryn Whitaker, PreemieBabies101 Lead Blogger

Tommy Strader with LukeIn 2010, when our son was fitted for a helmet to correct his plagiocephaly and brachycephaly, we were thrilled to learn of a non-profit, located in Dallas, that wrapped orthotic helmets for free.  Each month 360 Wraps, a for-profit business, closes their shop and opens it to parents and kids, like our son, to wrap about 15 helmets.  For us, the atmostphere was festive, welcoming and understanding as we made connections with other parents facing a similar situation.

Tommy Strader wrapping a helmet

However, as the owner, Tommy Strader (who still personally wraps every helmet!) started working on the first helmet, he began to tell us the story of how Wrap Buddies was born.  It was his witness and his easy-going candor that left the room speechless, sprinkled with bits of laughter.

In 2009, a father contacted 360 Wraps and asked if they would wrap his son’s helmet. Tommy had never heard of plagiocephaly, but decided it couldn’t be much different than wrapping a motorcycle helmet.  He typically charges $300-$1,000, but when he learned of the out-of-pocket cost to purchase the orthosis, sometimes as high as $4,000, he gifted the helmet to this father and his son.  News spread like wildfire and the shop started getting numerous calls a day.

Wrap BuddiesThrough some trial and error, the shop implemented a system, set up a website and established an official non-profit, Wrap Buddies.  They’ve wrapped over 300 helmets, to date.  More than 42 shops in 23 states offer helmet wraps for free or discounted costs because of Tommy and 360 Wraps.  His outreach has expanded beyond just helmets, as they’ve wrapped prosthetic limb and back orthoses, as well.

“I like to help out the underdog, as I feel in many ways I have been the underdog, and have overcome many obstacles to get to where I am and feel it necessary to pay it forward,” says Tommy. Read his full story.

Share

Feeding Tube Awareness Foundation

Interviewed by Erika Goyer, Hand to Hold’s Family Support Navigator

Making the decision to tube feed is never an easy one. Tube feeding is frequently associated with gravely ill adults, not as a way to help children get the nutrition and hydration they need to be able to grow, thrive, and develop. And tube feeding can be a scary prospect for parents, but it doesn’t have to be. Thanks to moms Traci Nagy and Laura Wagner.

Never Underestimate the Power of Parents

Harmony getting a bolus feeding, Courtesy of FTAF

Harmony getting a bolus feeding

Traci Nagy’s son, Lucas, received his first feeding tube in August 2008 at two months of age. She wasn’t satisfied with the resources available to new parents on tube feeding and the general lack of awareness among the general public of the benefit tube feeding can have to medically complex children like her son. In June 2010, Traci launched the “Let’s Get a Tube Fed Child on Sesame Street!” campaign on Facebook. In October 2010, she galvanized an effort to create Feeding Tube Awareness Week which resulted in creating the organization, website and Facebook support page.

Laura Wagner’s daughter, Harmony, has had a feeding tube since she was born in June 2009. Laura has been an advocate for creating awareness through her blog and her group on Babycenter.com, Special Needs and Medically Complex Kiddos. She pushed to make the Feeding Tube Awareness Foundation a non-profit organization.

A Movement is Born

Feeding Tube Awareness was founded in 2010 as a means of supporting parents of tube fed children and raising positive awareness of tube feeding as a life-saving medical intervention. Tens of thousands of infants and children are able to live, grow and thrive because of tube feeding.   The organization is dedicated to providing parents and caregivers with practical information needed for day-to-day life with a tube-fed child. In addition, FTA strives to raise positive awareness of tube feeding as a life-saving medical intervention, so that children who are tube fed enjoy increased acceptance in society and parents have greater support in their care. Traci and Laura want tube feeding families to know that they are not alone, even though they can sometimes feel like they are.

I Love a Tubie

The group’s logo “I heart a tubie” sums it up nicely. It is a symbol of embracement and empowerment for families faced with a child whose medical conditions require tube feeding.

Feeding Tube Awareness Week is the second week in February each year! 

To get I Love a Tubie apparel and find out more about Feeding Tube Awareness Week visit the “Raising Awareness” page.

The Mission of the Feeding Tube Awareness Foundation

  • “Provide medical type information in language that sleep-deprived parents can understand. That’s why we also have how-to videos made by parents

    G-tube, Photo courtesy of FTAF

    G-tube

  • Make tube feeding feel less scary and overwhelming. I have seen parents go through great lengths (often at the expense of their child’s health) to avoid tube feeding. Children need enough calories and hydration to live, grow and thrive. If they are unable to do it on their own, a feeding tube can help make sure they are getting what they need during critical stages of development. Children and parents quickly adapt to tube feeding and it becomes second nature just like everything else.
  • Change public perception of feeding tubes as being for the elderly at end-of-life. Public perceptions do not match the reality so many tube feeding families have. Tube fed children often don’t look sick. Children can reach their potential because they have the nutrition they need. Tube feeding can mean life is possible.
  • Show parents they aren’t alone. It is pretty easy to feel alone when you have never heard of tube feeding a child or met anyone with experience. But, there are hundreds of thousands of children who are, or have recently been, tube-fed in US alone. There are more than 5,400 parents, caregivers and supporters on the FTA facebook page and growing.”

If You are Considering a Feeding Tube

If you are faced with the decision to tube feed, here are some questions to consider:

  • Is my child safely able to eat and drink enough to grow and develop appropriately?
  • Will my child be able to catch up on necessary weight gain on his own?
  • Is my child using too much energy to eat and drink?
  • Does my child have a medical condition that will make it more difficult for her to maintain a healthy weight?

Join the Cause

Visit their website www.feedingtubeawareness.org or contact them through their contact page.

Feeding Tube Awareness’ facebook group offers real-time support and knowledge sharing among thousands of parents and supporters.

You will find a wealth of information, resources, and inspiring stories.

Hand to Hold especially loves the information page created to educate friends and family about feeding tubes and how they can support the families who use them!

photo courtesy FTAF

Let’s Spread the Tubie Love!

Share

Nurtured by Design

 

Yamile Jackson and sonYamile’s Story

In 2001, Yamile Jackson, PhD, developed severe pre-eclampsia. In order to save her life and her son’s – Zachary had to be delivered prematurely, weighing less than two pounds. Three weeks after his birth, while he was still in the NICU, Tropical Storm Allison flooded Houston and shut-down all power to his hospital including his life-support equipment. His parents and the NICU staff kept him alive “by hand” for 9 hours until he was safely evacuated. Yamile held him in kangaroo care while her husband Larry and nurses took turns “bagging” him. Eventually doctors found hospitals where they could safely evacuate the 79 babies in the NICU.

An Aha! Moment

Yamile and her son in kangaroo careDuring this traumatic experience, Yamile prayed for the opportunity to help babies on Zachary’s behalf. Every day for at least 10 hours she was at the hospital personally providing proper intervention strategies, individualized care, and therapeutic touch for her fragile baby. The nurses taught her that her presence was invaluable. When she was not kangarooing she used her hands to provide effective neonatal developmental care practices in comforting, nurturing and healing her convalescent baby. She promised Zachary that his pain and struggle to survive were not going to be in vain. She knew she would use her talents and experience to make the NICU stay more comfortable for other babies.

 A Parent’s Healing Touch

NICU baby held by a ZakyWhile the nurses had to care for multiple babies at the same time, Yamile gave her undivided attention to Zachary. However, at the end of each day the agony of leaving her son was too difficult to bear. She kept asking herself, “How can I help Zachary when I am not here?” and wished she could leave her scent and loving touch so her baby would not feel alone or abandoned. Using her background and PhD in ergonomic and human factors engineering, she created two ergonomic hands, Zakys, to simulate her and Larry’s hands. These arms continued giving “undivided attention” to Zachary until his parents returned in the morning. Upon Zachary’s departure from the hospital after 155 days in the NICU, the nurses requested that she make the Zakys to help all the babies in the NICU. Thus, her company was born.

Zachary’s story not only inspires everyone at Nurtured by Design, the company she founded, but his story of survival has also been featured in international media, articles, documentaries, and even the made-for-TV movie 14:Hours which aired on TNT.

Helping Parents Provide Kangaroo Care More Comfortably

Mom wearing a Kangaroo ZakYamile “kangarooed” Zachary for 6-7 hours each day in the NICU and is a strong advocate of Kangaroo Care. She is a certified Kangaroo Care Professional and a facilitator of the Certification Course provided by the US Institute for Kangaroo Care. As with her creation of the Zaky, she designed the Kangaroo Zak™ with the sole objective of facilitating hands-free, safe, prolonged, and effective kangaroo care sessions in the hospital and later on at home. The Kangaroo Zak™ consists of soft, breathable, stretchy and strapless top that wraps around the torso of a parent and closes on the side with an adjustable zipper to hold a baby in the correct position. The ergonomic device accommodates medical connections, helps infants maintain their temperature, and gives parents a way to hold their child easier so kangaroo sessions can last longer.

A Small Business with Big Impact

Nurtured by DesignInspired  by the premature birth of her son, Yamile founded her firm Nurtured by Design which manufacturers Zakys and Kangaroo Zaks™  to raise the standard of developmental care that hospitals and parents can provide to children in their care.  Yamile explains, “Babies only grow, heal, and develop the brain when they are in deep sleep. We are successful in providing an ergonomic environment that promotes sleep, effective parental intervention, and help the staff minimize interruptions, disruptions, and unscheduled nursing interventions.”  The results of an independent clinical research suggest that The Zakys significantly improve self-regulation and significantly decrease apnea and bradycardia of prematurity, thus improving neurological development. And, many fellow parents can identify with the connections and bonding that occurs between parent and child during skin-to-skin contact or Kangaroo care. We look forward to hearing more about innovations from Nurtured by Design!

Share

It’s a Preemie Thing

Julie Howard with her son Spencerby Kelli Kelley, mother of two preemies & founder/executive director of Hand to Hold

Julie Howard, preemie mom and founder of “It’s A Preemie Thing” is definitely not what I envisioned when I thought of an officer in the US Army.  Maybe her beautiful blond hair, sparkling blue eyes and infectious smile disarmed enemies?  Or maybe her amazing sense of humor had them rolling on the ground begging for mercy?  I really don’t know, but regardless she deserves our gratitude for her service to our country.  And as parents of preemies, we also owe her for bringing a little laughter into the NICU – a place typically void of humor.

How She Got Started

It's a Preemie Thing LogoIt’s a Preemie Thing launched on Labor Day, 2010 when Julie’s son, Spencer, was only 9 months old, and she was serving as a full-time Army Officer. A fellow preemie mom asked Julie to help her come up with a funny saying to put on the onesie her daughter would wear home after a long NICU stay. The precious baby would be leaving the hospital with a feeding tube, oxygen and several monitors.  Julie’s suggestion, “O2…it’s not just for old people,”  helped her friend embrace the needed equipment and celebrate their family’s major accomplishment – NICU graduation! Her business resulted from this a-ha moment when she realized it filled “the need for some humor in our lives.”

Not only does It’s a Preemie Thing sell fun onesies/t-shirts and scrubs, they also connect parents with organizations like Hand to Hold.  “Nobody is in this alone, we just have to make sure they know that,” said Julie.

I'm Older Than I Look - preemie onesie by It's a Preemie ThingHer Inspiration

Julie’s son was born at 29 weeks, 11 weeks early. At 10 months old, he was diagnosed with a rare brain malformation, Rhombencephalosynapsis (RS), and she resigned her commission to stay at home full time. And yes, you may see Spencer, as well as the entire University of Washington RS research team sporting shirts that say “Can you Rhombencephalosynapsis?” on the front and “Didn’t think so” on the back!

For the Love of Preemies Giveaway

On Valentine’s day this year, It’s A Preemie Thing will launch their 2nd Annual “For the Love of Preemies” giveaway, open only to families with preemies!  There are amazing gifts from some fantastic vendors, and photographers across the nation will donate their time and talent to ensure preemie families can have professional pictures made, since sometimes the large medical bills get in the way.

Name the Next Tshirt!

Have a cute slogan you would like It’s a Preemie Thing to consider? You could win prizes and help Hand to Hold earn funding fromonesie/ t-shirt sales. Stay tuned for more details coming soon!

Get in Touch

You can reach Julie Howard at 206-931-9171, online at www.itsapreemiething.com, on Facebook and Twitter.

Share

CareFlash

When people are caring for a loved one, keeping friends and family involved is difficult. Updating and engaging help can be an emotional drain. Organizing much-needed assistance with errands and meals is an exhausting challenge. Trying to be effective is painful when relying on emails and texts especially when you’re between home and the hospital. For most people, trying to help you and your family is awkward because no one wants to intrude. How do you keep everyone meaningfully engaged to help them feel valued?

Through a partnership with CareFlash, Hand to Hold is now able to provide free patient web pages called “care communities” to help you keep friends and family informed and make it easier to mobilize support as you care for a child or children in the NICU and beyond.

“CareFlash is proud to support Hand to Hold in extending their already incredible range of services by collaborating to help create better outcomes in the families they serve,” says Jay Drayer, CEO of CareFlash. “When launched from HandtoHold.org, CareFlash is a free service anyone can use to quickly and easily create their own private, online CareCommunity that includes rich capabilities for enhancing outcomes by helping friends and loved ones overcome the emotional barriers that commonly preclude engagement on meaningful levels…especially among families where their newest addition is experiencing a developmental challenge.”

Key features of the free service include the following:

  • Private, online Care Community
  • Blog for sharing updates, well wishes, care and love
  • iHelp Calendar to request and organize assistance from friends and family
  • Thousands of 3-D medical animations plus space to link to educational content to help explain medical issues
  • A photo gallery to share photos and relive great memories

The intuitive system takes minutes to set up and gives you the flexibility to involve friends and family in updating your community and iHelp Calendar which frees you up to care for your child/ren knowing your support network has your back.

CareFlash Button

Share

Bump Club and Beyond

Bump Club and BeyondAre you pregnant? A new mom? Looking for a connection with other moms and moms-to-be who know what you are going through? Bump Club and Beyond, which started in Chicago in April 2010 and has now expanded to Austin, offers Girls’ Night Out events, lunch and dinner seminars, discounted shopping, exercise classes and more. Member and Austin founder Jenn Larson happily became a fixture at BCB events after she moved to Chicago and learned she was pregnant. When she realized she would be moving back to Austin, she and Chicago founder Lindsay Spolan Pinchuk decided the women of Austin would benefit from the same supportive, social community that Chicago had embraced.

Austin’s Bump Club and Beyond debuted with its first event in October 2011 and will be hosting a number of upcoming events – some for families, some just for moms and others for moms and babies. Hand to Hold is excited to highlight a BCB-hosted Family Boot Camp Fitness Class, appropriate for all fitness levels, set for Nov. 19 at 11 am at Shoal Creek led by Meagan Linstruth of Baby Boot Camp. Registration is $15 and will directly benefit Hand to Hold. Registration will open the first week of November.

“I have a special place in my heart for the super parents of preemies after experiencing challenges with my own pregnancy,” said Jenn Larson, Austin BCB founder. “Bump Club and Beyond provided me with a support system similar to what Hand to Hold does for a very special group of new moms – those that endure less than ideal birth experiences.”

As the first and only social event company of its kind in Chicago and Austin, Bump Club and Beyond strives to provide the best resources in the city to connect moms and moms-to-be. Find out more about the upcoming Family Boot Camp and other BCB events by visiting www.bumpclubandbeyond.com/austin or on Facebook.

Share

Epic MedStaff Services Inc.

Epic MedStaffEpic MedStaff Services, Inc. is a home health agency licensed in the state of Texas. They provide in-home pediatric care from skilled nursing to sitters to care for your child’s special medical needs and for your peace of mind. Currently, Epic cares for infants and children with conditions such as: Acute/Chronic Respiratory Disease, Tracheostomy Ventilator Dependent, Cerebral Palsy, Spina Bifida and Genetic Disorders.  They are available 24 hours a day 7 days a week and take most insurance.  They are also part of the Comprehensive Care Program (CCP) and Medically Dependent Children Program (MDCP).

“Epic is a family conscious company that understands the struggles and daily challenges of caring for a medically fragile child in the home,” said Brett Tebbe, Executive Director.  “Epic specializes in caring for children by providing a safe environment that nourishes the physical and mental development of each special needs child. There is no greater joy than hearing a child laugh, or seeing their smile, and knowing that we were a part of that by providing the specialized care that they deserve.”

Contact Brett Tebbe at btebbe [at] epicmedstaff [dot] com or 512-372-3777 to learn more. Or visit www.epicmedstaff.com to see the other Texas cities where they are located.

Share

Legacy of Hope

2 Learn 2 Dream: Legacy of Hope’s Specialized Tutoring Program

2 Learn 2 Dream

Sometimes mastering school subjects takes a little extra effort, particularly for children with learning differences. The 2 Learn 2 Dream program provides individualized tutoring for kids who benefit from a more custom-tailored approach. There is no charge to families for this service!

Mel Wray is the director of the 2learn2dream program and brings over 30 years of classroom teaching experience to the desk. We asked Legacy of Hope to tell us more about this program:

 

“2 Learn 2 Dream is a tutoring service for learning differences children with a master teacher, offering individualized learning programs and scholarships. 2 Learn 2 Dream is a part of Legacy of Hope Austin, a non-profit organization dedicated to serving families with special needs children in the Austin area.  The tutoring services are provided at no cost to special needs families due to the generosity of donors.  An application must be submitted and waivers signed before final acceptance to the program.”

Mel Ray, 2Learn2Dream Instructor

Mel Ray, 2Learn2Dream Instructor

The Director of Tutoring is Mel Wray, a Master Teacher, with over 40 years of teaching experience.  She has taught in   public and private elementary schools. During those years, she taught students from all over the world with different learning styles and capabilities.  She has a passion and gift for teaching children how to develop a love for learning with an emphasis on fun and excitement.

After the student has been accepted to the program, Mrs. Wray and the student will have an informal meeting where Mrs. Wray observes the student’s skills in the following areas: communication, writing, reading, math, problem solving, gross and fine motor abilities, listening and following directions.  It is at this meeting that Mrs. Wray and the student have the opportunity to begin a relationship of trust and friendship.

Following this meeting, Mrs. Wray and the parent(s) work together to schedule a time and day for tutoring, discuss the importance of attending each session, and set some teaching strategies. ”We look forward to helping children open the treasures of their minds.” To find out more email: learn [at] legacyofhopeaustin [dot] org or call 1-866-HOPEATX (866-467-3289) ext. 2  Click here to view the 2learn2dream Family Application or to download and fill out the form.

Legacy of Hope

Started by parents, Legacy of Hope Austin is a non-profit organization dedicated to serving families of children with special needs in the Austin area. They presently have three programs that they offer, 2 Learn 2 Dream, a specialized tutoring program; 2 Dance 2 Dream, a dance class specifically designed for kids with special needs; and 2 Night 2 Dream, a respite care program staffed with a pediatric RN so that caregivers can get a well-deserved night off or couples can get out for a date night. These services are provided at no cost to families with special needs due to the generosity of Legacy of Hope’s donors. Call at 1-866-HOPEATX (1-866-467-3289) or email info [at] legacyofhopeaustin [dot] org to find out more.

Share

Site last updated May 17, 2012 @ 5:35 pm