Minneapolis Lite Run Clinical Trial

My personal objective has always been to give Hayden confidence in the body that God created for him. Hayden‘s body is not currently built for walking. He has hip and knee contractures, brittle bones and a dislocated hip. The purpose for us to explore the study was to see if he could get his brain/body an awareness connection. It was also to give him confidence in his ability to use and control his body independently.  This was a fantastic opportunity made possible through the many good people that orchestrated this study and our insurance for investing not only in Hayden but for new technology to benefit so many others.

Teaching 4th Grade Disability Awareness

This was by far Hayden's best year of advocating for himself.  He invited the new school AVP, school Physical Therapist, and Counselor to attend his "presentation".  Hayden has a wonderful teacher this year that has team-taught for over 30+ years.  They read books to the class and discuss disability every year.  A few years ago I helped present to their classes when I didn't have any kids in their class.  It was a great experience.

This year, just one day into class, Hayden got to teach the kids what makes him unique and what makes him just like everyone else in 4th grade.  

Show and Tell

While he as been in the same school since Kindergarten, many kids still do not know Hayden and why he is in a wheelchair.  I have always felt that the sooner we do the show and tell, the less nervous kids are about the differences and they come to an understanding that helps ease any of their fears or anxiety about having him in their class.

Hayden gets to have everyone touch his g-tube, extensions, braces and all his medical equipment.  

 These are his old 2nd pair of HKAFOs.  They are molded to his body like an exoskeleton to help him stand straight.  Now that he has grown with contractures he can no longer use it.

 He told everyone this is what he practices using to pick things off the floor or to reach for things.  He also said he wants a service monkey but they only bond with adults.

 These are Hayden's leg immobilizers.  They are what he sleeps in.  They are awesome and intense to put on and take off.

 Many kids loved his gadgets and gear.

 This is a wheelchair he got from Build A Bear that he uses for his stuffed animals to be like him.

 This stuffed animal he got from his kindergarten teacher and class when he had his third spine surgery.

 I love how much the kids liked touching everything.

 Some kids have had casts but most have not.  They liked seeing what the inside looked like full of cotton stuffing.

 He let all the kids touch the extension for his g-tube and syringe that attaches to his stomach.  This way they aren't scared of it when they see it hanging out of his shirt.

We also demonstrated that syringes don't hurt like a needle, they are just used for medicine and water and sometimes frosting cupcakes.

 This is Hayden's g-tube dog.  It is helpful to show what a g-tube looks like without compromising Hayden's privacy and showing it on him.  The kids had a lot of interest with the g-tube dog.

 Plenty of old AFOs from Hayden as a baby.

 All of Hayden's buddies trying out his gear.

 This is his Doctor Bear that Hayden takes with him to every surgery OR and it has surgery with him.  In the last surgery, the surgeon actually made real casts for his bear!

 The slide on the show with the pictures are all the unique things that Hayden has gotten to do socially to educate others about healthcare and disabilities.

 Following all the unique show and tell, we go into all the things that he likes to do just like everyone else...like kiss Princesses, exercise, play and dance to music and watch his favorite football team.

Hayden loves many activities, he loves to ride horses at hippotherapy, he loves to ride the school bus, basketball, football, to race his wheelchair, play ice hockey, to go swimming, go surfing, to play t-ball, kickball, go to camp, play swords, rock climb, fly airplanes, ride in police cars, and go to friend’s birthday parties and playdates.

 This was the first year where he spoke for the presentation and answered questions himself.  He did a great job.

 Although he likes to do many of the same activities as everyone else, he may just do it a little differently.  He has pride in his abilities and has never been discouraged from participating in anything he wants.  His positive attitude is his best ability.

At the end of the presentation, one sweet girl raised her hand and said, Hayden, will you come to my birthday party...

Lastly, we opened up to Q&A and had many questions.  Some of my favorite highlights ever:

1. What is your favorite food? chocolate anything...
2. Do you have a wheelchair that can get wet?  his powerchair can't but we can get one at Morgan's Wonderland and every kid should go there
3. Do you have to take a shower? yes, just like all of you, he has to take a shower or a bath too, whether he likes it or not
4. What do you like most about your disability?  We answered all the special things you get to do and Hayden said his shunt....but the true answer is having unique opportunities of meeting some of the most talented, selfless, generous, caring, service-oriented, devoted, faithful, kind, all-around best people humanity has to offer.  We are a part of a group in society rarely anyone ever wants to be a part of, yet as we embrace it, we have found it to be the most inclusive place and are grateful to call it our "Tribe".

We wanted to give a handout for the kids to take back to their parents for discussion so here is what we attached:

This is what I learned about my friend Hayden Trigg with Spina Bifida:

www.HaydenTrigg.blogspot.com

www.TexasTriggs.blogspot.com

What is Spina Bifida?

https://sbtx.org

http://spinabifidaassociation.org

It is when you are born with part of your skeleton, your spine not fully forming causing lots of problems and lots of surgeries.

Things that make Hayden unique:

• He has freckles and spiky hair
• He has been on TV many times
• He has a treehouse from Make-A-Wish
• He was the poster child for Seton Hospitals for 5 years and Dell when it opened
• He has had 24 surgeries
• Hayden has lots of things to help him get around (wheelchairs, walkers, standers, AFOs).
• Hayden uses a tube that feeds his belly and he has a tube in his brain.

Things that make Hayden like Me:

• He has a little brother 
• He has a big sister
• He plays t-ball 
• He likes bowling
• He likes basketball 
• He likes flag football 
• He likes swimming 
• He likes air hockey
• His favorite food is chocolate
• He loves ice cream and McDonald’s milkshakes

The only true disability is a bad attitude. We are all differently-abled.

This is a great article should you find the time to read it:

https://api.themighty.com/2018/08/please-talk-to-your-kids-about-disabilities/

“As you sit down to discuss topics like manners, school etiquette, and homework policies, please add disability awareness and being open to friendships with children who have disabilities…Children learn by example, and they are always observing what their parents are doing. Too often as I am out and about, parents yell at their child for being too close to my wheelchair or acting as if I’m going to run over their child. No one in a wheelchair purposely sets out to run down children. These behaviors teach children that people who use wheelchairs are to be alone and avoided. It says that people who use wheelchairs are scary. Please stop doing this. If your child is in our way, we will go around them like anyone else. Let them talk and ask people with disabilities questions. Show them it’s completely normal to interact with someone who has a disability.”

Surgery #24 Dental

Dental surgery #24 went better than expected.  Now that Hayden is older he is more aware and anxious about what is taking place.  He was very worried about anesthesia but our good friend who is the doc, as well as the dentist, did a great job keeping him calm and confident.  The other thing that makes it such a good experience is that this surgery doesn't have to take place in the hospital OR.  As long as this is something that can be done in-office by competent doctors and anesthesiologists, it is such a better environment.  Hayden had a cavity in a molar that was supposed to be getting a crown but once the doctor was able to get a better look at it, he only needed a filling and a good cleaning to remove all the excess plaque that builds upon the one side of his mouth.

Surgery #23 Calcaneal Cavis Bilateral Foot Surgery

Hayden’s favorite movie is “The Greatest Showman”. Not because the music is great.  Not because the acting is wonderful.  Not because it is well produced.  It is his favorite movie because it is a story of HIS people.

Hayden’s foot surgery has been on the books for quite some time. It is a surgery that has made him very anxious over the past few months.  #brokenparts #weareglorious #thisISme #greatestshowman

I am very thankful to his elementary school counselor, Mrs. Lucas, for meeting with Hayden and discussing his concerns.   He had been making all the kids at school worried for him too.  It is so sweet to see how sympathetic other children can be.

Hayden is very familiar with going to the hospital.  He cried at his last appointment with his neurosurgeon just because he was so very anxious to be around doctors these days.  It all ended well and he was relieved to give him a hug.  I am so proud of him for going to his school counselor for his concerns. I had no idea of the extent of his anxiety until the counselor told me he had approached her independently.  I was so proud of his self-advocacy and for having an approachable school counselor.

This was a relatively minor surgery considering all that he’s been through in the past.  Now that he is older and more expressive he is more aware and anticipates what happens after visiting with doctors.

We have a wonderful team of doctors that care for Hayden.  Today we added a new member to Team Trigg, Dr. Dahne.  He is bright and kind.  He also cast his doll to look like him.  Hayden is excited to get his friends to sign his casts.  He said, “they’ll see my orange casts coming and going.”



He lyrics to the song This Is Me explains so much more than I can:

I am not a stranger to the dark
Hideaway, they say
'Cause we don't want your broken parts
I've learned to be ashamed of all my scars
Runaway, they say
No one'll love you as you are

But I won't let them break me down to dust
I know that there's a place for us
For we are glorious

When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I'm meant to be, this is me
Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me

Oh-oh-oh-oh
Oh-oh-oh-oh
Oh-oh-oh-oh
Oh-oh-oh-oh
Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh

Another round of bullets hits my skin
Well, fire away 'cause today, I won't let the shame sink in
We are bursting through the barricades and
Reaching for the sun (we are warriors)
Yeah, that's what we've become (yeah, that's what we've become)

I won't let them break me down to dust
I know that there's a place for us
For we are glorious

When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I'm meant to be, this is me
Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me

Oh-oh-oh-oh
Oh-oh-oh-oh
Oh-oh-oh-oh
Oh-oh-oh-oh
Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh
This is me

and I know that I deserve your love
(Oh-oh-oh-oh) 'cause there's nothing I'm not worthy of
(Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh)
When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
This is brave, this is proof
This is who I'm meant to be, this is me

Look out 'cause here I come (look out 'cause here I come)
And I'm marching on to the beat I drum (marching on, marching, marching on)
I'm not scared to be seen
I make no apologies, this is me

When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I'm gonna send a flood
Gonna drown them out
Oh
This is me

Songwriters: Justin Paul / Benj Pasek

This Is Me lyrics © Sony/ATV Music Publishing LLC, Kobalt Music Publishing Ltd.