Urology Surgery #12

This has been a tough post to compose so I will break it out into parts.  Overall we have felt happiness and joy for the progress Hayden has made since his many surgeries in 2013.  

1.  UROLOGICAL SURGERY 3/28:  

I do write this post to ask for prayers again to be answered that this Friday 3/28.  He will have a urological procedure to possibly eliminate the reoccurring infection that he has been stricken with for the past 6 weeks of many doctor appointments, emergency images and follow ups.  Fortunately he does not express any pain from the infection while he has been treated.  However, he has become resistant to the antibiotics and this procedure is the least invasive before drastic measures need to be taken.

It should be a quick procedure, but he will still need to go under sedation.  It is not expected that he would need to stay overnight in the hospital.  We should be able to go home the same day. 

While we have felt a calm assurance that this is the best course of action, I sought out a second opinion from the UCSF Chief of Pediatric Urology so that when Hayden is older he may not think we made hasty decisions.  This doctor from UCSF oversaw us with our participation in the MOM's trial and was prompt and gracious in his response of concurring with the decision and offering us a third and fourth reference for opinions.

2.  6 MONTH SPINA BIFIDA CLINICAL EVALUATION:

For our Spring Break we got to go to the hospital and visit with a few friends that totally get us & we get them and love them:).

A family get together for Austin Spina Bifida families.  So grateful to all of those wonderful people that worked hard to organize and pull us together.

Hayden also had a Spina Bifida Clinic 6 month evaluation over Spring Break.  As a mother it is very difficult to summarize over 8 hours of medical meetings and appointments and then to retell the summation to the other doctors and nurses and agencies, family & friends that care for Hayden.

So I brought one of Hayden's wonderful nurses, Dana, along on the day of SB Clinic to be my second set of ears and medical mouthpiece.  We were very pleased to show all of the progress to Hayden's Team (OT, PT, Speech, Orthotist, Orthopedist, Nuerosurgery, Gastro Intestinal, Genomist, Nutritionist, Urology, Physical Medicine & Radiology) and all the doctors, nurses and clinicians that visit with us over the course of a whirlwind, marathon medical day.  After reviewing many images they were overall impressed with his incredible improvement to his health, his strength, his endurance, his weight gain and to his cognitive abilities since they last saw him while he was critically ill prior to his tethered cord surgery.

Nutritionally, the G-tube that he is primarily fed through, has been a great blessing.  We fought many years to forgo taking such a drastic feeding measure.  Since the multiple surgeries of last year, has thrived nutritionally, positively effecting his entire system with a whole food blended diet.  He does eat orally but mainly for pleasure and not nutrition.  As his oral food aversion lessons from not vomiting daily, he has been willing to participate in tasting new textures.  

I learned a lot that day at clinic for a new doctor on Hayden's team.  He is a doctor of physical medicine.  He was impressive in his overall assessment of Hayden taking into account all of the specialists and devising a proactive and not reactive plan for his future (psychological evaluations, summer intensives of PT/OT coupled with botox & new clam shell AFOs).  He was a breath of fresh air!  He believed that Hayden was unique enough even to Spina Bifida that he took a sincere interest in him and how he is similar to kids with forms of cerebral palsy and muscular dystrophy.

I learned that due to Hayden's increased strength, he also has some draw backs.  Hayden's increase in weight and height caused him to quickly outgrew his new orthotics by 2 & 1/2 inches in width and height.  Also, his hip is migrating out of socket that is causing him to experiencing occasional pain in that leg.  I also learned that he does not have opposing muscle groups to balance things out and that is further complicated with his diagnosis of Hypotonia. He also has contractors in his hips and knees due to ligaments shortening with decreased range of motion.  All of these things add to the list of procedures and therapies we try and implement throughout the day and night to help correct things that need a little more help.

The good news is, all of his team of doctors and clinicians & therapists all are aware of his upcoming stem cell treatment in Mexico and are interested in seeing and helping to measure the results.

3.  STEM CELL TREATMENT DATE:

The deposit has been made and we have booked June 26th for the procedure at NOVA Cells Institute.  We had been working on getting the medical records released for over 4 months and now they have them!  Thank you for all of the kind and generous donations that were made to his birthday fund to help him get the deposits for the procedure done.  http://www.gofundme.com/stem-cells-for-hayden

We still have a long way to go but believe our sacrifice and investment will be worth it. According to the poster in the office of our apartments, St. Jude Children's hospital is currently performing stem cell treatments on children with leukemia to the tune of over $100,000 for your own stem cells and over $200,000 for donor stem cells.  I need to attach the poster break down image. This makes our investment of $16,000 seem like a bargain.

I just love this picture of a very happy moment.

4.  SCHOOL EVALUATION:

Hayden has been alert, happy & overall in good health.  He has scored well enough in his school ARD (Admission, Review & Dismissal) of an IEP (Individual Evaluation Plan) that it was determined that he is academically on target with his piers and will not need intervention through attending summer school!

He will still need aid and assistance but he can achieve his academic goals.  His nurse took this picture on his birthday at school.

Any surgery is a set back, but he is an amazing little boy who quietly conquers his trials, slowly works to regain his strength and endures all things.

We made our own Spring Break and celebrate a week later at the San Antonio Zoo.

Thank you again for caring, offering advice and support when we need it and for the quiet prayers on his behalf.

Hayden Turns 5!

So happy to celebrate a happy time with my boy who has endured so much.  He is going to have a great year being 5!

Thank you to so many of you who have given him the best birthday present, the gift of healing. We will continue to raise funds until his treatment date 6/26/14.  

If you would like to make a birthday donation for stem cell treatment please see:

http://www.gofundme.com/stem-cells-for-hayden

Health update:  Hayden has been suffering for the past month with an ongoing scrotum infection.  It is unclear why he has the infection and it has not been eliminated from the 3 weeks of antibiotics.  He is now on his 4th round after many doctor visits and surgery is being talked about.  Surgery to re-repair a hernia and possible testicular surgery.  Urilogical issues are one of the many "secondary" issues that effect him, and many with Spina Bifida, on a regular daily basis due to nerve damage at the spine.  I will update as we learn more.

Celebrating a New Year and a new start!

Please help us celebrate Hayden's 5th birthday with the gift of Healing.

We're raising money for expenses for a trip to Mexico for Stem Cell Treatment and to make the most of the trip by doubling it up with a trip north of the border to Anaheim CA/Disneyland Hotel for the National Spina Bifida Conference in July 2014. After years of saving and researching the benifits and medical facilities for treatment, we have decided to go forward with a leap of faith. 2013 was costly (financially, emotionally & physically) for our son, Hayden, having 5 surgeries in just 6 months. All documented on his blog:www.haydentrigg.blogspot.com . While Hayden will likely have many more surgeries in his future, stem cells may help make that number a little less and his body a little stonger. 

Stem cell infusion gives us hope for healing and recovering what has been lost physically and neurologically to rebuild and regenerate the damage caused by surgery and scar tissue. Disneyland, post surgery, will also bring emotional healing meeting with our fellow Spina Bifida community with friends gathering from around the country. Many of whom we have "known" for years but never met.

Stem Cells: The treatment in Mexico is from Nova Cells Institute Mexico and is customized to meet the needs of the patient. Stem cell treatment is being done in the US but is not yet available for children with Spina Bifida. Stem cells are extracted from cord blood, placetal tissue and Wharon's jelly. In the case of Spina Bifida, the stem cells are then primed to change into neurospheres -- the types of cells that build and repair nerves. The stem cells are also programmed to target the signals that bodies send out when there is an injury. The stem cells are then injected via lumbar puncture and IV under a general anesthesia. The entire treatment takes 2 to 4 hours and is a day procedure. Hosts pick-up the family from San Diego and bring them to Tijuana and provide translation and support for the day. Once the treatment is over and the patient is stable, the same hosts drive the family back to San Diego.For more information about the treatment via Nova Cells, please review their website at www.novacellsinstitute.com . 

Conference: Attending this conference means so much to us. The huge amount of information from medical professionals accross the country as well as being surrounded by other families that look like ours brings joy and emotional healing having an easy, accessible place to learn and vacation.http://www.spinabifidaconference.org/ 

Please feel free to read our blog www.texastriggs.blogspot.com to learn more about our family.



Thank you for any birthday donation you make in helping make this a very happy 2014!

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👌