This story shares Savvy’s experience only. The following is not reflective of results as investigated by a formal research study and reflects the experience of one family.
Overview
This article goes in depth on Savvy’s progress following 7 months of Trexo use and covers:
- How Savvy grew to love the Trexo despite not liking any other equipment
- Transitioning to walking without a saddle seat to assist with weight bearing
- Improved coordination as seen through crawling and reaching
- Stronger core and improved sitting
- Carry over in her gait trainer as seen by her physical therapist
Altogether, Trexo has helped Savvy build more self-esteem and learn how to enjoy exercise. Find out how below!
Meet our friend Savvy
Savvy, who is 5 years old, is a funny little girl. She loves having fun with her mom and sister Liv, watching Abby Hatcher and playing games at home. Savvy is a very happy child and she loves to work hard, always with a smile on her face!
When Savvy was just 18 months old, her orthopedist diagnosed her with spastic quadriplegia cerebral palsy. She has since been receiving regular therapy, in addition to her Trexo. Her mom has big goals for her which keep them focused. They plan to continue to get stronger and get Savvy to walk in her walker. And most importantly, to always be happy.
Life without a Trexo Home
Savvy’s mom, Cristina, knew the importance of regular gait training. With Savvy in a gait trainer, Cristina would “sit in the basement and facilitate walking with my hands”. Like this, they would go around and around until Savvy had enough practice for the evening. Which would take a while.
While visiting their physical therapist, they learned of the Trexo Plus clinical trial at the St. Mary’s Hospital for Children. Although they were very excited to try it, St. Mary’s is one hour away from their home. When Cristina reached out to them for more information about the trial, she learned that the Trexo was also available for lease to use at home. They decided to reserve one right away.
Getting set-up with the Trexo
When they received the Trexo, Cristina tells us “the whole family was excited and nervous”. Savvy hates all equipment, and they knew that there would be a learning curve. As expected, she was very upset on the first day being put into this new equipment. Today, however, Savvy enjoys her Trexo sessions very much.
Cristina of course had a big role in this. Initially, they just “stopped telling her [Savvy] what they were doing” before the Trexo session. With time, they began incorporating games on the iPad into her Trexo sessions which took place in the basement. Suddenly, playing games in the basement became a fun evening routine.
And then a few days ago, Savvy just walked in her Trexo. With no distractions from games or other activities. She simply enjoyed walking.
Their current routine with the Trexo involves approximately 30 minutes of walking, 5 times per week. After they finish using the Trexo, Cristina makes it a point to keep Savvy working hard. She unhooks all the straps on her Trexo legs and Savvy has to lift her legs and step out of the Trexo on her own.
Good-bye stander!
This wasn’t the case with other equipment though. The sight of her stander, which Savvy no longer uses, still makes her cry. Cristina recalls when they would use the stander prior to the Trexo, Savvy would just lean in it and cry. There was also the ordeal of getting her set up in the stander which was a challenge and would take a long time. Needless to say, no one was having any fun when the stander came out.
The ongoing challenge of Savvy’s dislike for the stander and other equipment, made it hard for the whole family to ensure she was doing these things regularly. “You start to neglect things that aren’t fun and hard” Cristina says.
Now, on days that walking with the Trexo is not ideal, Savvy will just stand in the Trexo and watch TV. And she’s fine with it because there is more room for movement, and she doesn’t feel too constrained.
Benefits from Trexo use
Full weight bearing
Since receiving her Trexo in March 2020, Savvy has been working up to longer sessions, faster speeds, and increased weight bearing. She took some time off Trexo walking in July following the removal of hardware from her hip surgery, but then picked right back up as soon as she was feeling better. Now, Savvy reached a new milestone, walking without the saddle seat which provides weight bearing support.
Cristina and Savvy had a check-in to adjust their Trexo with Manmeet when they decided to remove the saddle. At first, Cristina noticed that the saddle was rubbing against Savvy’s leg. While on the video call with Manmeet, he noticed how much stronger Savvy looked, and suggested to remove it altogether.
The next time Savvy went to use the Trexo, the saddle was gone. And according to Cristina, Savvy didn’t even notice it was missing.
This is a remarkable achievement. Using the Trexo without a saddle requires the child to do full weight bearing, balance themselves between steps, and keep up with the reciprocal motion of the Trexo legs!
Better coordination and stronger core
When quarantine started in March, like many families, they switched Savvy’s physical therapy to videocalls. After a few months of Trexo use, Cristina noticed that Savvy was doing much better in her prone position (belly down) exercises while doing video physical therapy.
Additionally, prior to the Trexo, Savvy was not coordinated but now she knew how to move her arms and legs together. As a result, her crawling has improved.
She is also sitting up much better and can sit with less assistance. This enables her to play games with her hands without falling to one side as she used to do before. And the other day, she bent over and took a sip of her drink and then sat back up all on her own!
Gait and carry over
Her physical therapist, Jackie, noticed changes too. Jackie was working with Savvy prior to COVID related stay at home orders, and is now happy to be reunited with her at school. Having a baseline to compare to, Jackie has noticed how much improvement Savvy has made during this time. She has had carry over from walking in the Trexo to better walking in her gait trainer at school.
“Just wanted to let you know Savvy was showing off today in the gait trainer for me, taking the most incredible reciprocal steps on her own. It’s so cool, I’m seeing so much carry-over from the Trexo!”
– Savvy’s Physical Therapist, Jackie
Other changes
There were many other subtle changes that Cristina shared with us from these past few months as well. It is hard to say if these changes is directly linked to the Trexo but with everyone stay at home, Cristina is convinced the Trexo played a big role.
For example, Savvy is now sleeping better. She is also a lot more comfortable in her body. Sometimes, Savvy can sit with her legs stretched out rather than the more comfortable w-sitting position.
Overall, Cristina shared that Savvy has just been more active. She is moving her body a lot more in general. For example, she loves to kick her legs up and down more now than before and feels more comfortable moving around spaces.
Interestingly, during this time Savvy has also progressed from saying short phrases to putting together sentences. Now, she asks so many questions and “sounds like she has her own language” her mom says with a laugh. We don’t know if this is directly related to the Trexo, however, Savvy’s family is not the first to notice such changes. Jacob has also had improved speech while increasing his Trexo intensity during quarantine.
Conclusion
Like many children with cerebral palsy, Savvy has had several corrective surgeries over the years. This leaves her mom wondering “would she still need hip surgery if I found you before”.
They have found ways to incorporate the Trexo to help Savvy build confidence and get stronger. To keep up the excitement, they have a calendar where they circle the Trexo days in an orange marker and that keeps them on track.
And it’s easy to stay on track when everyone is having fun. No tears from Savvy, just lots of questions and fun games.
Looking for find more success stories? Watch the progress made by Iris in 5 months and read about Aliah’s boost in confidence.
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