Closing the health crisis chapter

It has felt like the time has come that we officially close Hayden's health crisis chapter.  Hayden had his last follow up to his tethered cord surgery with his neurosurgeon, Dr. George.  It went very well.  We didn't know quite how to thank him.  How do you thank a man who repeatedly saves your son's life?

Hayden hand wrote a thank you note and worked very hard on coloring.  Holding a pencil, marker or crayon is very difficult for Hayden.  Hayden is in special education to get him on educational track to where he will be able to be in class with his piers in Kindergarden.  He has learned how to mark a H with much assistance.  He only recently has learned how to pull off the cap on markers. He can not yet put the marker with the cap but has started to find joy knowing that he can make marks on paper.

We bought the doctor a pair of red boxing gloves.  We are not a boxing family but thought there was some symbolism in protecting a surgeons hands in a battle.  The carefully colored note read, thank you Dr. George for knocking out my tethered cord symptoms and giving me a fighting chance against Spina Bifida.

We have been overjoyed having our healthy, happy Hayden again.  Let these pictures show you how we have closed the health crisis chapter and are on our way to celebrating this Thanksgiving season.

 At Hayden's season ending game for the Cardinals... he is off waiving to all his fans.

 Hayden and his best buddy getting their season ending trophies for the Cardinals.  Hayden working hard at holding up one finger to show you he is number 1.  While his hat may be too big, his ears are working hard at holding it up.

 One of the amazing volunteer coaches & his life long best buddy.

 Hayden's buddy bringing him home & to the super cool exclusive non-parent dugout.

Oh yeah,he loves his cheering squad.

He even is back to loving therapy.  Here he is with his favorite PT, Gil, showing him how to use the force.  

Hayden is living an authentic life of pure love, humility, endurance and hope.  We are forever changed by this little boy and the special people and circumstances he has brought into our life.

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.
http://www.lds.org/music/library/hymns/be-thou-humble?lang=eng

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



http://www.lds.org/new-era/2013/08/the-mitch-mobile?lang=eng- you can read this article any many more...

The Mitch Mobile

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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.

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.

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.

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 conference.lds.org, 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”).

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👌

Day 5 tethered cord surgery

We are going home tomorrow! I'll let the pictures speak a thousand words. We started off with a tour of the hospital.

Mobile blogging has everything out of order. So you'll have to match the caption with the picture yourself.

Hayden got to look out a little window that was just his height. From the fourth floor he could see puzzle pieces down below. We had to investigate.

He had to visit his baby picture in the cafeteria. Not for self-promotion but for Hayden promotion.

He likes the number four all over the floor because he's four years old.

On our adventure he picked some flowers for his sweet day nurse Annie.

He had a visit from the entire family today. Hanna and Garrett had fun playing at the Ronald McDonald House.

He had a sweet visit from a therapy dog Jenny today & got lots of kisses.

He played Pablo Picasso with his toys from his nurse Heather and delivered them to her at work.

Hayden's work here is done. Now he can return home and rest from his labors.

Day 4 tethered cord surgery

Hayden continues to improve. The physical therapist along with daddy got Hayden into his wheelchair today. He sat at a 90° angle and roamed the halls. I was at home for a quick stop doing laundry and visiting the kids when I heard and couldn't believe it😁.

He was in a great mood for physical therapy and with occupational therapy as well. After all that commotion he was pretty worn out and sore.

Just after therapy, he got a visit from his best friend Josiah. Even though his pain meds had and worn off, Josiah knew how to cheer him. It must've been Josiah's fast wheeling maneuvers and Cars' tattoo action that put a smile on this boys face.

Today with neurosurgery and the urologist there was even talk about being released tomorrow.

When Hanna visited she said, "when I grow up I want to be a doctor so I can help kids feel better."

Winding down after a family Face Time session from home, I told Hayden it was time for bed. And Hayden's words, "that's rude."

Hope you all have a restful night.

Tethered Cord Day 3

Day three is much better than day two. Hayden had his shunt flow study. The MRI and x-ray proved the shunt is working properly. He continues to complain about headache & continues to be in quite a bit of pain. However his mood is much better today.

He continues to have low-grade fevers. Labs are sent for analyzation. Neurosurgery moved Hayden to a new room and new floor from the immediate care floor to the neuro floor. Mooven' on up from the 2nd floor to the 4th floor. We were greeted by all too many familiar doctors and technicians that we have worked with this past year along the halls of transporting. All of his balloons could've carried him up to his new room.

Seeing Haden happy really lifts our spirits. Along with fun visits from our good friend Lei Strueling. She's the only one who knows how to make you laugh in the hospital. He also had his first visit from his family. He was very happy to see them.

Thank you again to everyone who helped lift our spirits through your sacrifice of time and caring energy. Praying he gets some healing rest tonight. His little body is worn out.

Day 2 tethered cord surgery

Hayden is my hero. Today was a tough day for Hayden. He felt a lot of pain. He had a fever for most of the day & complained about a head ache. Neurosurgery thought he should have a shunt flow series done as well as a MRI. Results to follow.

He has been receiving excellent care. With a visit from past Dell hospital employees & friends Lei, his physical therapist Doug, and his home health nurse Heather (that also works at the hospital). His presents and balloons continue to increase. Adding to the collection is the Thomas the train and Elmo balloon. He was most happy about all the tattoos he got today.

His hospital nurse has a busy schedule. She's in charge of managing his tube feedings and venting, his bowel management, pain management, catheterization, and wound care. I try and mainly focus on hugs & kisses & entertainment while I try and let the hospital work on the rest.

Tethered Cord Spine Surgery #11

Hayden has successfully made it through tethered cord surgery! It is with grateful hearts that we now make the journey into recovery. We can sincerely say that we felt the power and peace from prayer brought into our lives during surgery. For each prayer that was offered, we shed one less tear.

He is a sweet peaceful boy. Going into surgery, he knew what was going to take place and was brave. The incision site is about 4 inches long. The neurosurgeon said everything went as he expected. We arrived at 6am & he was assigned to room 220 at 2pm.

He is already acting like himself again. He woke from anesthesia wanting juice and popsicles. He will recover laying flat for the first two days.

His pain is well-managed and we hope to keep him infection free. Because of this we request no visitors until his wound heals.

Hayden will have interesting stories along his life's journey. We are honored to love him & witness his sacrifice and extraordinary price he pays with struggles for great blessings.

We are blessed to have Kristin taking care of and Hanna & Garrett while we take care of Hayden.

Annual spina bifida clinic

When I checked into the clinic one of the nurses said, "wow your a mom starts off her day with roller-skates on."

Today I can report back on my gratitude of all the many people that have helped lift us along during this difficult journey. I am grateful for the ministering angels/friends & family that show up and fly in to help, that brought us food when we didn't think we needed it, that showed up at the door early in the morning to help take Hanna to the bus stop, that placed thoughtful calls & unseen family prayers and the many medical professionals that all express care and genuine concern for his health, I know I couldn't do it alone.

I will say clinic surprised me today. It was a one-of-a-kind day. Hayden received a new diagnosis Hydronephrosis of the kidneys. This means that we now get to catheterize Hayden every four hours to alleviate the pressure in his kidneys and bladder. One more thing to add to our new normal.

While Hayden's main diagnosis is Spina Bifida, that is a general term that encompasses many diagnoses of the brain, of the spine, of the legs, of the hips, bladder and bowel, and much of his coordination and muscle tone.

Let me begin by recapping the day. The day started off early having everyone ready and leaving the house at 6:30 AM. This morning Hayden met with a registered dietitian/nutritionist, a urologist, neurosurgery, physical therapist, occupational therapist, orthopedic surgery, social worker, orthotics & University of Texas genomics. It was a thorough and exhausting day.

New prescriptions from urology, gastroenterology and neurosurgery with many follow-ups and several blood tests to follow. The real surprise came at the end of the day. Neurosurgery said the fast acquisition brain scan and MRI was not conclusive as it was unreadable with a few missing images of the lower neck portion of the shunt.

Orthopedic surgery said the x-ray of the spine and hips was inconclusive as the image and angle of the hips was not sufficient to make a determination. They also are waiting until he has tethered cord surgery to compare any imaging.

The physical therapist, occupational therapist, as well as the registered dietitian all are waiting to see the results of the tethered cord surgery and the interplay with Hayden's small and gross motor abilities.

The gastroenterologist thought that we should make a follow-up appointment with Hayden's general surgeon that placed the G-tube to have nitrous oxide freeze the granular tissue that has
developed around his button.

When the urologist came in he was very surprised to learn of Haydens UTIs. He was pleased to learn of his upcoming tethered cord surgery to relieve these symptoms. But ultimately was very surprised when he saw all of the water on Haydens kidneys. He had an ultrasound done in June and everything looks perfectly normal. We will follow up with the urologist three weeks after the tethered cord surgery. The real results will not be shown for 4 to 5 months as the spine can go into shock following this surgery.

So what does all this mean? We'll continue to pray and take each day at a time and do the best we can.

One Week post G-tube surgery

Uncensored, open and honest.  I have begun to type this post many times.  I am concerned about the tone that it will cary and portray into the future.  I would like it to read as unyielding optimism.  For now, I have decided to be in this moment and explain the uncensored, complicated version of where we are.

It has been one week since we came home from the hospital.  Hayden has had a few good days in a row.  I feel that while making that claim, I am walking on egg shells.  We have had many starts and restarts to a frustrating recovery. We continue to pray and hang onto hope and draw nearer to our Faith.  The heart-aching part is trying to find peace knowing that there is no "cure" to Spina Bifida.  This is a journey that is teaching us all along the way each and every day.  We believe God has a plan for Hayden's life and a divine purpose.

As educated as I have tried to be on complex medical matters, I can never learn enough.  The tests and surgeries have produced little answers, but Hayden's charm and determination is beginning to resurface which feels like the beginnings of recovery.  For those of my family and friends who are not religious, I have tried to address everything in an analytical manner and researched, read, called and spoke with every professional and publication within my reach.  For my friends and family of faith, it is my faith that leads me in the direction that I should go James 2:14-26.  It is during the quite times that I feel inspiration on where to go next.

Coming Home:

Getting released from the hospital was a complete struggle.  It took us a full day to go home.  We began bright and early cleaning the Ronald McDonald house where we stayed only to spend the rest of the day waiting for the all clear to go.  After Scott had made it to the airport to pick up my sister Julia, Garrett had developed a fever of 102.  I had to leave the hospital to take him to the pediatrician.  He was  diagnosed with a respiratory virus and I had to keep him clear of Hayden when we got home late in the evening.

The first three days that we got home are a bit of a blur with little sleep due to a sick baby and recovering toddler. Here is what the button looks like without invading Hayden's privacy.

Thanks to good friends, the help of a nurse (Dana), and the assistance of two sisters (Melyssa & Julia), we managed through the week and even went on a date.  Similar to the poems Footprints in the Sand, when I was suffering from anguish, sorrow, and defeat there were many footprints in the sand carrying our family and making our burden lighter.

This is what we got to come home to after an exhausting stay at the hospital.  Thanks to the Davies family!

Having 8 people in our apartment might be a housing or fire code violation of some sort, but we did it.  Hayden has made it one week at home and even made it out of the apartment two times.  His energy is slowly returning and he is looking more like himself.  This was his first outing going to the opening weekend movie premier of "Planes".

The tough news:

Last Wednesday we had a follow up with the neurosurgeon to go over the test results.  The results of the tests (MRI, Somatosensory Evoked Response & Brainstem Auditory) produced no notable findings.  This is good and bad.  The MRI did not show any more fluid in his syrinx and did not show blockage in his Chairi brain malformation.  That just means that the fluid in the brain and the spine is not pinched.

As we spoke with the surgeon, he said his gut led him to believe that the spinal cord that he had operated on Hayden at birth (myelomeningocele )was tethered and was creating nerve damage that was creating the many unexplained and escalating symptoms that Hayden has been having such as, eating, swallowing, increased scoliosis, decreased mobility, writhing, slowed growth, and loss of balance to name a few.  I had unfortunately been anticipating this for some time.  I may have been in shock as I was emotionless at this news.  Not even one week post G-tube surgery and now we are being told Hayden will have to undergo spinal surgery as soon as possible.

Hayden also has scoliosis.  It is unclear at this time if he will have to have rods put in his back to straighten his scoliosis or if by untethering his spinal cord from the scar tissue if it will straighten out on its own.  I have not felt worry about this yet as we work hard at getting him healthy from this surgery first.  tethered cord research with scoliosis

We have been strengthened by positive thoughts, messages, visits, good deeds, meals and all the prayers that keep us going each day.