Wednesday, October 23, 2013

Tethered Cord Surgery Progress

We are thankful for happy healthy children. We have experienced pure joy yielding from promises and blessing assured.

Hayden's spine surgery combined with countless prayers have nearly eliminated two of his diagnosis. 4 weeks post op, Hayden's Urologist said his hydrostenosis of the kidneys is completely gone! We will continue to catheterize every 4 hours to maintain that the neurogenic bladder and kidneys remain healthy. It is a lifestyle change that we are trying to incorporate as our ever-changing definition of "normal".

This week we are excited to meet with his neurosurgeon. As a family along with our nurse, we will be able to bear witness of our noble son's healing and nearly complete elimination of Aerophagia and improved quality of life. With this diagnosis, when no cause could be clearly noted, only symptoms could be treated. The symptoms were awful and escalating for nearly a year. As a process if elimination and months of testing and surgical procedures, it has proven that spinal scar tethering apparently was the neurological cause.

The g-tube feedings are going well. Hayden had sustained the majority of his nutrition from prescribed pediasure formula for years. The past few months with the help of a fantastic nutritionist, we have started a blenderized diet with his vitamix that he is fed through a feeding tube. No more formula. His oral appetite has increased as well and his energy has been restored.

This lengthy trial has polished our character and proven the hardest and greatest learning experience. This journey is a purifying one of devotion that deepens our desire and unyielding determination to learn and grow as much as is within our capacity. It has unveiled our authentic strengths and humbled our will becoming more submissive to better receive charity and service from others (and thank you to all you many "others" out there).

We have been brought low but felt a calm assurance in our prayerful decisions over the many surgeries he has endured. We do not know long term prognosis. We work hard and have faith that the work will do good and be worth while. Each day that he is happy and healthy is a gift that we celebrate. Some days we really hate Spina Bifida and the crisis it causes our family. The good days we used to count by the hour and recently we are counting by the week and soon month....

Be thou humble in thy pleading, and the Lord thy God shall bless thee,
Shall bless thee with a sweet and calm assurance that he cares.

Sunday, October 20, 2013

Spina Bifida Awareness Month 5 years ago & The Mitch Mobile

Irony?  Just came across an e-mail and realized that 5 years ago today Scott and I learned that our unborn baby Hayden, had something called Spina Bifida.  We were devastated.  5 years later and lots of learning all along this journey, we have been spiritually and physically stretched, challenged and transformed.  While the wisdom that we have earned has been a painful process, the friendships and associations have grown further than ever imagined.  

Today was a peaceful, happy day celebrating Hayden and all the joys of our family while worshiping our God and giving thanks for our Savior, Jesus Christ.  It has been a pleasure to parent a loving child such as Hayden.  We have been inspired and humbled to have asked and received countless service from friends and strangers.  

Below please see the great article about the goodness of (thanks Anna) a Scout troop serving a boy with Spina Bifida with inspiration & friendship.

"...when we strive to become better than we are, everything around us becomes better too." --Paulo Coelho you can read this article any many more...

The Mitch Mobile

young men hiking
Photographs courtesy of Nate Leishman and Jonathan K.
When Jonathan K., 17, was helping to plan an upcoming high adventure activity with his Scout troop, he couldn’t get one young man out of his mind: his friend Mitchell F., a young man with spina bifida.
The group had some incredible—but physically challenging—country in mind they wanted to explore. They were planning on hiking through canyons and other wilderness areas around southern Utah.
Jonathan knew the rugged terrain they planned to visit could make it difficult for his friend to participate. However, he and the rest of his troop wanted to do all they could to allow Mitchell to join the adventure. “We wanted him to experience everything too,” Jonathan says.
Illustration by Scott Greer

Giving a Lift

As a solution, Jonathan used his Eagle Scout project to build a carrying device—the “Mitch Mobile,” as it came to be called—that would allow the young men to literally carry Mitchell throughout the journey.
There was no shortage of volunteers to help with building the Mitch Mobile. Friends and business owners from around town donated supplies to build the carrier and harness. Many people worked long hours to make sure the entire construction was safe, strong, and portable.
Of course, it was only after the carrier was completed that the true service began. After a few short trial runs around town, it was time to take the Mitch Mobile out on its true maiden voyage.
young men in canyon

The Wide-Open Wilderness

Ultimately, the high adventure outing was a huge success from start to finish. Jonathan and friends were able to carry Mitchell over every stretch of landscape and rough terrain they’d planned to see and explore. All of the young men gladly took turns wearing the harness. “I love taking him with us,” Jonathan says. They have since been on trips to many other backcountry locations.
“We’ve taken him everywhere,” Jonathan says. They’ve traversed slot canyons, cliffs, rivers, sand dunes, and steep hills. “He’s basically like a brother to me.”
As for Mitchell, he’s enjoyed the camaraderie with his friends every step of the way. He’s also enjoyed the amazing terrain they’ve visited together. One of his favorite activities was rappelling. “I’ve loved it,” Mitchell says.
young men in costume

Modern-day Warriors

The Mitch Mobile had yet another chance to shine when Mitchell’s older brother Spencer, along with Jonathan, carried Mitchell during a community parade. They marched with a large group of Latter-day Saint young men dressed as the 2,000 stripling warriors to carry the message of the gospel.
Mitchell wanted to ride in the harness rather than a wheelchair, because he thought it would be more accurate to Book of Mormontimes. He loved being in the parade with so many other youth. “It was pretty powerful,” Mitchell says.
young men

Blessing Others

Even after all the young men have done with it so far, the Mitch Mobile is just getting started. The carrier will benefit others for years to come. The Mitch Mobile was donated to a local spina bifida organization, so while it remains stored permanently at Mitchell’s home, the carrier is also available for use by others who can benefit from it.
The lives of many people will be blessed because a small group of young men wanted to make sure one of their closest friends never had to feel left out.

Learning from General Conference

Numerous speakers in the April 2013 general conference spoke about serving others. For example, President Thomas S. Monson said, “I pray that we may be aware of the needs of those around us. … May we ever be ready to extend to them a helping hand and a loving heart” (“Until We Meet Again”). And President Dieter F. Uchtdorf said, “Serving God and our fellowmen will challenge us and transform us into something greater than we ever thought possible” (“Four Titles”). Read the rest of their talks at, where you’ll also find inspiring messages on this topic from President Henry B. Eyring (“‘Come unto Me’”), Elder Tad R. Callister (“The Power of the Priesthood in the Boy”), and Brother David L. Beck (“Your Sacred Duty to Minister”).

Saturday, October 12, 2013

Resuming activities 2 weeks post op

Feeling blessed to see Hayden starting to return to his normal self. He was exhausted from his activities. The great day started off with T-ball with his best friend Josiah. We love to live near the miracle league.

Part two of the great day concluded with our good friends birthday party at the fire station.

Lastly I thought I'd share that he was cleared from his neurosurgeon to resume physical activity just no contact sports👌