Welcome to the first interview in a new series where Allicyn Hayes who is the mother of Kawai, a young CP Warrior, joins in conversation with Trexo families to learn more about the changes they have seen and discuss benefits of using the Trexo Home.
This interview is with Caro, mother of 3 wonderful children: Luz d’Luna age 4, Eros age 2, Paz age 1. One of Caro’s daily priorities is to incorporate daily movement for Luz, who is affected with Hypoxic Ischemic Encephalopathy (HIE), using the Trexo Home. The following interview shares her experience and insights of the Trexo, as told by Allicyn.
This story shares Luz’s experience only. The following is not reflective of results as investigated by a formal research study and reflects the experience of one family.
Meet Luz & her mom Caro
I first connected with Caro through a Facebook group for children with special needs. Caro had seen a video of the Trexo in a cerebral palsy group on Facebook. “I was very intrigued,” Caro says thinking back to that moment. “I didn’t know how we were going to make it work, but I knew Luz needed one and we had to make it happen.”
Caro said she had to make it happen because “I knew Luz wanted to be in a vertical position over every other position. She would complain sitting or being held like a baby. She wanted to be eye to eye with other kids. Cory [Luz’s father] would try to hold her under her arms and try to get her to walk around our home daily.”
Eventually, Luz had to get hip surgery because her hips were not in good shape. Because of this, Caro was uncertain if Luz would be ready for the Trexo post-surgery. It was hard and the recovery was rough.
Luz tries the Trexo
Finally, Luz received her Trexo in August 2019.
Caro shared how the first trial with the Trexo was awful. Luz was screaming and crying. Of course, Caro was worried that Luz was uncomfortable. Things were not looking good.
“Thankfully Manmeet [Trexo’s CEO] had suggested making adjustments to the gait settings. Once it was changed, she stopped complaining and started to smile! Initially it was stressful because Luz can’t tell me how she feels, but then I realized she was happy with the Trexo and liked it. So, the following day we brought the Trexo home.”
Now, Caro sets daily goals with the Trexo. At first, they started with short sessions, just 10 minutes of walking at the slowest speed. “Go slow was the plan.” With time they began adding a second session each day and Caro followed Luz’s cues to see if they could increase the duration.
“First, we went over 10 minutes by 1 minute, then 5, then 15. We started noticing she was enjoying it more and by the end of the session she was super exhausted.”
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Caro’s vision for the Trexo
It can be hard to justify spending money on adaptive equipment when you’re not sure it will benefit your child. Caro and Cory spent time mulling over this as well, “I was trying to convince myself what the actual value of the Trexo was and knew there had to be more than just walking.”
They decided, they saw Trexo as a means to give their family freedom.
In expanding more on this Caro shared that they had moved to be closer to the NAPA Center in Los Angeles where Luz was receiving therapy. The whole family had to move and their new area was expensive. Moreover, buying a home was not an option. “We were sacrificing a lot for one person in the family. Luz is worth it, but is it fair to the entire family?”
Since then, a major benefit of the Trexo is that it gave them freedom so that if they needed to move, Luz could still access movement and activity at home. For example, they no longer had to work around therapy schedules. Sometimes, Caro tells me, they would even do a Trexo session at 3am because Luz is up and she’s happy. “You can’t do that with therapy!”
As time went on, Caro and Luz were diligent about their walking routines with the Trexo.
Eventually, Caro noticed a lot of changes she didn’t anticipate happening as a result of the Trexo. The first one that came to mind was head control, which she says has also resulted in better eating and breathing for Luz.
Lift that head
They first noticed head control changes when Luz was in her car seat after the first week of Trexo use. Previously, when they would drive Luz to school, there always had to be someone in the back seat with Luz because it was not safe for her to be in car seat alone as she would drop her head.
After a week of Trexo use, Caro was driving Luz to school and noticed her head dropped as usual. “Luz pick up your head” she repeated and that time Luz actually did it! Caro excitedly recalls, “It was the first time she ever did it by herself!”
From g-tube to chunky foods
As Luz’s head control improved, they noticed changes related to eating as well.
Like many kids with cerebral palsy, Luz has always had a g-tube. When she was young, she was eating pretty well by mouth and was eating chunky food at one point. Unfortunately, when Luz started teething it was extremely painful for her and caused a setback. Eventually they had to rely on the g-tube solely because Luz’s eating regressed.
Since using the Trexo, Caro noticed Luz’s swallowing and managing her saliva has improved a lot. Therefore Caro went back to baby food purees and worked slowly until Luz was able to get back to eating bigger chunks. “Now I am not stuck if I’m out and don’t have a blender nearby to mix Luz’s food!”
I can do it myself
According to Caro, Luz’s body awareness increased immensely. Even though she is in a “machine,” she is doing it herself without the help of another person.
She is now getting to a point where she can shake her head no and use her voice to say yes. Caro thinks that Trexo has directly played a role in this by helping increase Luz’s strength.
Also, the movement helps Luz focus her eyes better due to her CVI (cortical visual impairments). The Trexo is helping her with using her vision. They even practice her speech therapy in it!
“Trexo is giving us hope because as a parent you are told all of these things your child will never do. Trexo has changed that.”Luz’s mother, Caro
Freedom for the whole family
Turns outs, the Trexo hasn’t only had positive changes for Luz.
“We were at extreme levels of sleep deprivation and were constantly on edge with our nervous systems because we hadn’t slept more than 5 hours a night in 1 ½ years,” Caro tells me when thinking about Luz’s trouble with sleeping. Luz started improving her sleep dramatically. As a result, Caro and Cory no longer need to take shifts monitoring Luz throughout the night and can rest up as well.
Recently their family moved and have yet to find a consistent therapist with regular openings. However, Caro said she doesn’t feel as stressed and pressured to find one. “The mom guilt is not as strong because I know the benefits she is getting from the Trexo.”
Of course, as Luz gets older, Caro worries about her willingness and desire to do therapy. Often times children with cerebral palsy don’t want to do any more therapies as they age. Therefore, Caro’s goal is to do as much now while Luz is younger and adjust as she gets older. The goal is to prevent contractures, deformities and spasms from happening and “Trexo is helping us to combat all three things.”
Meanwhile, Luz had a growth spurt since they received their Trexo in August. “She was chubby and short. She is now lean and tall. I don’t think this would have happened without her walking so much.”
Caro wants you to try the Trexo
In response to the question what would you like parents considering the Trexo to know, Caro responds “Just do it. I only saw a short clip that was posted in a cerebral palsy group and I did it. I have no regrets about it.”
She emphasizes that the Trexo lease option is great if you don’t want to commit because you can see if your child likes it and if it is helping.
Moreover, families who cannot afford to lease or purchase the Trexo can look for centers who have it or start promoting it to their therapists. “Word of mouth is the best way to get this out there especially coming from parents. Doctors and therapists don’t have time to keep up on the latest and greatest things. They learn from parents. I shared it with the NAPA Center and now they have 2 Trexo devices.”
As Caro reflects on their time with Trexo and how things have changed, she shares that it has improved everyone’s quality of life, not just Luz. “We have more flexibility and freedom for our family. I love it. I believe in technology and brilliant minds coming up with ideas and turning them into a reality to fulfill wishes for kids who may not even be able to ask for things.”
“Special needs families’ lives are a constant rollercoaster and are always changing. The one thing that doesn’t fluctuate with Luz is the Trexo. It keeps getting better and better and better.”Luz’s mother, Caro
At the time of writing this – Luz has done 172 sessions and over 57,000 steps. She started officially August 8, 2019. Her goal for 2020 is 100,000 steps.
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