Tuesday, May 15, 2018

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
Hide away, they say
'Cause we don't want your broken parts
I've learned to be ashamed of all my scars
Run away, 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 seenc
I make no apologies, this is me
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
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
This is me

Songwriters: Justin Paul / Benj Pasek
This Is Me lyrics © Sony/ATV Music Publishing LLC, Kobalt Music Publishing Ltd.

Saturday, November 18, 2017

Lake Travis Football Reloaded

2017 Playoff friday night games in Texas.  Today Hayden was presented with his 2017 team jersey.  #7 was the retired number of NFL and former LT player, Garrett Gilbert, whom Hayden got to meet for his first time today.

After a fun filled day, the energy of the night was great.  Hayden got to see many of his friends/babysitters and enjoyed the sidelines with his buddy from school.

Hanna and Garrett way past bedtime
Front and center with the action!
Principal Gordon Butler always cheering on the team.

He was thrilled to meet NFL player, Garrett Gilbert, Hayden's #7, that he gets to wear.
Garrett Gilbert (born July 1, 1991) is an American football quarterback for the Carolina Panthers of the National Football League (NFL). He was drafted by the St. Louis Rams in the sixth round of the 2014 NFL Draft. He played college football at Texas and SMU. Gilbert has also been a member of the New England PatriotsSt. Louis RamsDetroit Lions, and Oakland Raiders.

Tonight we prepared half-time refreshments for the team as a thank you for all they have done for us.  We are sure that is what lead them to another victory in the second half of the game.

Wednesday, October 25, 2017

Orb Recording Studio & CC4C

Getting ready to rock!  Hayden's occupational therapist should be so very proud of how hard he was working trying to use both hands.  He even got to keep the drum sticks as a gift.
Hayden says, "don't Hate Me today!"  Livin' the dream! How do you spend your Tuesday morning?  Hayden spent his rocking out with a real rock star, CB Hudson from Blue October!
We had never been to a recording studio and we were all taken back a bit by just how cool it was.

Inside Orb Recording Studios for the interview with CBS, where many famous musicians have recorded including Justin Bieber,  Lil' Wayne & The Beach Boys.

Hayden was excited to be interviewed by Allison Miller, with CBS Austin, which is set to air this Friday.  He is natural in front of the camera with CB.  Thank to Champions for Children providing this opportunity to show how you spotlight children in the community.  It was a day where you forgot the dis in disability and enjoy a once in a lifetime opportunity!

CC4C spotlights 10 children this year in Austin.  Read about these amazing kids here:  http://cc4c.org/champion-children-3/

Wednesday, September 6, 2017

Red Arena hippotherapy, horses not hippos

Hayden has been fortunate to start back at Red Arena.  Some people may not know the benefits of horse therapy.  The horse is good for people that don't walk as it has a similar gait to humans. This way Hayden gets to experience what it feels like to walk with reciprocating movement. He also gets to practice his trunk support to help his balance and crossing midline to use both sides of his body all while playing games with these gentle teachers.

This year he also is in a reading program where he gets to read to the horses.  I have never seen him so excited to read.  He starts off his therapy sessions by reading to horses, grooming them and then he moves onto riding.  The reading program is taught by a former special education instructor.  The program is free due to generously donated grant money to Red Arena.

Friday, August 25, 2017

Teaching 3rd grade about Spina Bifida

This was our fourth annual classroom discussion in elementary about spina bifida. This is the first year that Hayden did the talking. He was very proud to tell everyone about his special equipment and what makes him unique. He always ends with telling everyone all that he CAN do just like everybody else.
Hayden uses assistive technology to do his homework.  He can't hold a pencil or write so he uses an iPad and works twice as hard, taking more than twice as long.  The whiteboard shows his practice at spelling words behind him.

Hayden showed everyone his G-tube dog and got to show off what the G-tube actually looks like. We explained that it's like an ear piercing on your stomach and that you don't have to taste your medicine. He's very proud of himself and his 22 surgeries.

The actual G-tube.

Hayden got to show off a lot of his braces and molds. The kids were very fascinated by all of his equipment. They liked to getting to touch and feel them. He also got to explain the rules of his wheelchair, which is, you have to ask before pushing. We gave them the idea of the song,"U Can't Touch This" by MC Hammer.

We showed off a few of his special braces, orthotics and casts.

We explained that every night Hayden works out stretching his legs in knee immobilizers.

He explained that he can play lots of sports in different ways.  He loved showing off his t-ball, football and state football championship ring.

He is also starting adaptive PE with his new mobile stander at school.  We are blessed by the complete acceptance that he receives in school.  It is amazing how being in the "least restrictive environment" has been the best place for him to flourish.

He requires a lot more than most kids with a nurse, aide, and two teachers.  Their efforts amaze me.  It truly takes a village.  Below is the bio I make every year for each teacher that works for Hayden.  It helps to understand his awesome uniqueness a little bit better.

Our Vision for HAYDEN

Our vision is simple.  We want Hayden to be given the same opportunities as any other student in the school.  We want him to LIVE, LOVE & ACHIEVE whatever dreams that he wants.  It is important to us that Hayden be seen for what he CAN do & not for what he cannot do.  We want Hayden to reach his full potential academically & socially.  If his teachers & staff have high expectations for him, he will SUCCEED at his personal goals. 

VALUES that are important to us as a family:
  • We value the celebration of Hayden’s STRENGTHS 
  • We value the use of People First Language ex:  My student Hayden has a wheelchair, not Hayden can’t walk. His legs may not work, but his ears do.
  • We value the appropriate responses by adults to questions regarding Hayden’s differences.
  • We value Hayden’s inclusion in all activities fostering his INDEPENDENCE.
  • We value our parental role as a part of the team that supports Hayden in his education.
  • We value his school experience & private therapy, which is helping him reach his FULL POTENTIAL.

Hayden loves to be social and loves being around people.  He has a big sister, Hanna (5th grade) and a little brother Garrett (4.5yrs).  Hayden goes to the doctor ALOT.  He loves music.  He has a great private duty at home and school nurse, Neal Shotwell since kindergarten, and he loves being part of the LT state championship football team with CC4C.  He has lots of friends and Hayden loves the ladies too.

A lot of things make him unique.  He has a lot of gear and equipment that most kids don’t have.  He has had 22 surgeries, he has 2 wheelchairs, AFOs, HKAFOs, RGOs, a stander, a walker, a feeding tube & a brain shunt and 26 diagnosis.
Hayden is a happy boy.  Hayden loves all activities, he loves to ride horses at hippotherapy, he loves to ride the school bus, basketball, t-ball, football, to race his wheelchair, to go swimming, to play t-ball, kickball, go to camp, play swords, rock climb, to cheer for and annoy his sister and to be a big brother.  
as provided by another special needs father Matthew Linden
Spina Bifida/Myelomeningocele: Spina Bifida (SB) is the most common seriously disabling birth defect in the United States. An estimated 5 children are born with SB every day in the US. SB occurs during the 4th week of pregnancy before many mothers know they are pregnant. In cases of SB, the spinal column fails to close properly which exposes the spinal cord to amniotic fluid. This exposure leads to damaged nerves. SB can occur anywhere along the spine – from the neck to the tailbone. The higher the defect occurs on the spine, the more severe the damage. Hayden’s level is L5-S1 which is considered severe.
Arnold Chiari II,& IV Brain Malformation: Hayden’s brain has to work harder than most with his variety of abnormalities.  The Chiari is a herniation of the brain that goes into the neck.  His cerebellum is not only displaced, he also has a tethered cord as well as hydrocephalus. He has a lack of cerebellar development as well as a thin brain stem and splits in his spinal cord.

Hydrocephalus: Most children with SB have Hydrocephalus (HC). HC occurs when the spinal fluid produced in the brain does not properly drain into the spinal column. For this reason, many children with HC have a tube (shunt) placed to drain the excess fluid. Hayden’s shunt is behind his right ear. There is a tube that runs underneath her skin to his abdomen where the excess spinal fluid is absorbed by his body. Hayden’s shunt does not limit his activities in any way. 

Symptoms of Shunt Malfunction: Getting a simple cold can look like a shunt malfunction.  An onset of excess sleepiness, lethargy & vomiting require a trip to the ER for testing.  Shunts do fail from time to time for a variety of reasons. Symptoms of shunt failure would include “Sunset Eyes” and/or a constant headache that would manifest itself by long-term inconsolable crying. Sunset Eyes is when the pressure behind the eyes forces them to look downward as if the pupils were a setting sun and the lower eyelids were the horizon. 

Epilepsy:  Hayden has recently been diagnosed with seizure activity.  He is on twice a day medicine to try and control the episodes.  He also will have rescue medicine at home and at school should he have a major seizure.  There is a seizure action plan at the school.

Scoliosis: In some cases, children with SB have scoliosis a bend in the spine. Hayden needs to be placed in any chair that gives trunk support.  Positioning in his wheelchair is also important.

Hypotonia: Hypotonic patients may display a variety of objective manifestations that indicate decreased muscle tone. Motor skills delay is often observed, along with hypermobile or hyperflexible joints, speech difficulties, poor reflexes, decreased strength, decreased activity tolerance, rounded shoulder posture, with leaning onto supports, and poor attention. For instance, hypotonia also leads to constipation. In some cases, muscle tone improves over time, and we hope that Hayden may learn or devise coping mechanisms that enable him to overcome the most disabling aspects of the disorder. 

Digestive Tract: Hayden has a g-tube that he gains most of his nutrition.  Instructions for emergency replacement are in his bag.  It needs to be placed within a half an hour or he should be rushed to the hospital for placement.  He can eat and drink on his own as well.  He also has a severe gag reflex that can cause him to vomit.  He is watched carefully when fed because of his gag reflex due to his Arnold Chiari.  Hayden’s digestive tract does not work as fast as a typical child’s. This can also lead to vomiting as he has slow motility of his food.  

Mace/Mitrofanoff/Neurogenic Bowel & Bladder:  Hayden has a high pressure bladder like a hard basketball that was rebuilt with part of his intestine.  Hayden can void on his own but not completely.  At 8 years old we are catheterizing him every 3-4 hours.  Instructions are in his binder and every effort should be made to not touch the catheter to avoid infection.  Hayden also has little control over his bowel.  He is on Miralax as needed and can push to eliminate but it is unclear if there is much sensation.

Wheelchair: Differently abled people view their wheelchair as a part of their body just as a typical person views their legs as part of their body. When you touch a person’s wheelchair, the same rules of etiquette as touching a person’s body should apply. As a general rule (and for safety), only adults should push Hayden’s wheelchair. That being said, opportunities for Hayden to get physical exercise are limited so whenever possible, she should be encouraged to self-propel. As a matter of safety, the brakes on Hayden’s chair should be locked whenever he is taken out or put in her chair. Hayden should NEVER be left unattended near a slope or flight stairs as he will intentionally try to roll down them.

In an Emergency: Should an emergency arise, Hayden should go to Dell Childrens’ Hospital

Phone: 512-324-0000

Parent’s can also be reached by cell phone:
Adrienne Trigg: 
Scott Trigg: 

as provided by another special needs mother Kim Johnson

What you expect of me matters… 
Because I will rise to the level you set for me, and I have many lofty goals to achieve. 

What you think of me matters… 
Because I will sense what is in your heart, and it will shape not only how I feel, but what I do. 

What you say of me matters… 
Because you are setting a tone, and leading my way. You are the voice I wasn’t given to help others understand not just what I have, but who I am.

What you accept about me matters… 
Because if you meet me where I am, and embrace me for what I have to offer, together we can shoot for the moon and at least find the stars. 

What you do for me matters… 
Because when you offer me not just your time, but your devotion, and not just your attention, but your passion, you are not just fulfilling your duty, but rather answering a calling. 

What potential you see in me matters… 
Because if you can envision my wings, then I will learn to fly. 

What investment you make in me matters… 
Because if you dedicate yourself to making me stronger, it is not only me who will be bettered, but you will be, as well. 

What connection you have with me matters… 
Because if I know you care, then I will care. You will reach me, and I will grow. 

What attitude you have about me matters… 
Because if I am seen as a blessing instead of a burden, my world will be much brighter, and my achievements will be much greater. 

What you believe about me matters… 
Because if you see my strengths and not my weaknesses, there is no mountain we cannot climb. 

What hope you have in me matters… 
Because the dreams you hold for me are woven into every step of my journey, and when those dreams are big, so, too, are my accomplishments. 

What ACTIONS YOU TAKE because of me matter… 
Because you are not only my teacher, but my advocate. The role you take in my life helps dictate the very path down which I will travel. Your power can help open doors for me that now stand shut, raise standards for me that remain far too low, and redefine the boundaries in my life that will either hold me back or help me soar.