September 4, 2024
So, it has been some time since the last update. The summer was busy with travel, spending time with family, framily, and friends, plus more therapy and even helping therapists grow in their craft while welcoming in a family member.
Xavier returned to Colorado for another three week intensive working hard to improve and evolve even more. Working for 4hrs each day for five days each week with physical, occupational, and speech therapists sharing his smile, laughter, tenacity. Turning hard work into play and fun. When not working hard Xavier and family visited many Denver and Colorado sites to include the Garden of the Gods, Denver Aquarium, Red Rocks Amphitheatre, and local parks and nature trails.
His speech has truly improved over the past few months expressing himself more clearly, repeating many phrases he hears, and reciting the alphabet or singing some of his favorite songs. He loves to say the names of his sisters, especially his newest little sister - Yemaya. He also had a visit from his paternal grandmother - Nana Berry.
Lots of gains and wins this summer. The only negative thing to report on is the delay in him getting and gaining access to the TREXO robotic walker due to US FDA rulings that changed the device's status and halted/delayed shipments to the US. We wish we had known when we were in Canada earlier this year that we were so close and could have picked up a device to bring back for him. But, we hope the FDA and TREXO take actions that are best for the community of children like Xavier in the US that would gain independence and confidence.
Later this month we will travel to North Carolina for a stem cell transplant, where Xavier will receive umbilical cord blood that we have saved from his younger sister. Watch for more info soon!
Don't forget to follow X on his Instagram @XCL_at_life for more daily happenings!!
We continue to thank all who have and continue to donate toward Xavier's fund to help him travel, gain access to therapy, and thrive.
April 5, 2024
Where to begin??? Lots of movements and news to share. Xavier has been making huge strides with his therapies. Of greatest improvement is his speech. His use of multi-word statements has increased and his "parroting" (repeating statements) have also increased and they are clearer each day.
His use of his right hand (most affected by his CP) is improving and increasing. Choosing to reach out and grab first with his right hand and able to let go of objects on request with greater ease. He is still working hard to gain better control.
Along with his speech, his use of his eye-gaze speech computer improves every day giving him access to words, emotions, and engagement that he didn't have before. And, we can easily combine that with other therapy or daily events - mostly we use it when he's eating. He quickly flips through the pages of symbols and words to let us know he likes the food or would like to try something different. He gets to play some games, too, that improve his eye coordination.
Of greatest note, X was approved for stem cell treatment in NC. The biggest challenge will be funding the treatment. A $15,000 price tag plus another $2-3k for travel and lodging is the precise reason donations and fiscal support is key to his development. The potential of his growth and further development is what drives and encourages us each day - plus that million-dollar smile.
Finally, we've shifted from our previous blog due to policy changes with the website host. We'll be bring more updates here to HHL and still offering consistent content on his Instagram account. We hope you'll follow, share his story with others, and consider continued donations to help him in his quest.
March 7, 2024
So, there is much to provide update on! Xavier has done some traveling to receive intensive therapy opportunities.
He first spent 3 weeks in Colorado at the NAPA Center - Denver. He worked extra hard receiving 4 sessions of therapy each day - OT, PT, DMI, and Speech. He also did some sightseeing and of course made new friends.
A few weeks afterward, X and the family traveled all the way to the Toronto, Ontario area to receive another week-long intensive with the S.M.I.L.E. Therapy for Kids Clinic in Thornhill, ON. Here he had 3 - 4 hours of therapy each day focused on OT, PT, and Speech. He also did some more sightseeing and experienced poutine for the first time. He seemed to really enjoy it.
We also received news that his Trexo walker is set and ready to ship...but, we have to wait a bit longer due to some governmental administrative changes that restrict shipment. We remain patient and hopeful that everything will resolve quickly to get X into his robotic walker and out into the neighborhood.
Most noticeable in all of this is the explosion of X's vocabulary. From saying his own name, his sisters' names, and many more two and three word phrases. The new means of communication and engagement just proves his hardwork is paying off.
October 6, 2023
More travel, more therapy, more smiles...
Xavier has done some traveling the past few months to Arizona, Texas, Maryland, and North Carolina to receive therapy, see family, framily, and make new friends, and learn, grow, and share his positively infectious smile with all.
We held our first fundraiser with pretty good success gained in better understanding outreach and donation support. We're grateful to those that showed up or donated toward our first goal of being able to purchase a TrexoRobotics walker for XC. Nearly half the funds needed have been raised through the generosity of our (global) community.
His therapies added more tools to help XC achieve greater success and independence. The results have been positive as his motivation and ability to stand, sit, and crawl have all increased and improved. Many of these info items can be found in the latest blog update.
We are grateful to all who've chosen to support Xavier and will continue to do so.
https://aprilanddjlong.wixsite.com/xclpart2/post/whirlwind-past-few-months
https://www.trexorobotics.com/
July 25, 2023
Xavier did his first week long therapy intensive last week and he did AMAZING! We went over to AZ to see a therapist there and to spend time with some friends. Xavier did 2 therapy sessions each day and he rocked it. He was a motivated and hard worker, and kept up his sense of humor the whole time. While walking across obstacles or practicing extra tricky balancing skills he'd still manage to make some fart noises to get a laugh from mom and his therapist... or he'd be singing his favorite "La La La" song. We are looking forward to another couple of intensives coming up in the next couple of months!
July 12, 2023
We have had great help from our neighborhood is organizing our first fundraiser to assist getting XC closer to greater movement and engagement with his environment through a Trexo Robotics Gait Trainer. The event is scheduled for Saturday, 29July. Check out the links for more information and details:
RSVP - https://forms.gle/nZ5nkYYyvk2qLnwc9
July 1, 2023
So, XCL has traveled a little more and helped many and fledgling therapists learn new skills or refine skills. Yet, our main focus of effort is acquire the funds that support him becoming part of the EXOSQUAD with his our exoskeleton suit to give him greater autonomy and opportunity to do what toddlers do best.
March 31, 2023
All - we wanted to provide a more specific update for what we hope to raise funds for:
1. Trexo Robotics Gait Trainer - This is a Walking Trainer/Aide put together and delivered by Trexo Robotics (https://www.trexorobotics.com) that XC has recently been able to demo to make sure it was a good fit at the Abilities Expo in Los Angeles. You can see him in the exo-skeleton apparatus on his Instagram (IG) page (@xcl_at_life) or on Trexo's IG (@trexorobotics). The cost to lease the equipment is about $40K. This single piece of equipment will truly give XC more access to his environment and allow him the chance to go on walks around the neighborhood with the family.
2. Therapy Intensives- We have week long intensives scheduled for July 2023 in AZ, Aug 2023 in TX, and Sept 2023 in NC, and are in process of scheduling another. These are in additional to his regular ongoing weekly therapy sessions in San Diego. The benefit is that Xavier can focus intently on those skills that he is close to mastering, to give his brain/body optimal and focused learning time. The intensives are not covered by insurance. We have been successful in securing grant funding for some of the cost of the sessions only (not for travel or lodging).
3. Stem Cell Therapy: We have researched a number of procedures and locations. We have banked little sister's umbilical cord blood and are on a waitlist for stem cell therapy that will utilize the stored blood to increase the opportunities for Xavier's body to recover from the "injuries" experienced in his birth. The results would potentially allow him greater access to his own body and thus his environment. The treatment requires our family to travel across the country and all costs for the procedure will also be out of pocket.
Any help you are able to provide will be exponentially beneficial (and a tax write off). XCL and family appreciate and love the community that supports us, and especially Xavier Calvert!
March 24, 2023
While the constant fiscal support to services and equipment not covered by insurance persists, XCL's family have identified two items/services that will provide near immediate support to XC's development and engagement. The first item is a TREXO Robotics Home System walking aide. He recently used one during a demo at the Abilities Expo in Los Angeles. Having this aide would allow him greater engagement with the neighborhood, adding to his development. The second service is to receive stem cell therapy that can help his body develop and even potentially improve his neuroplasticity (brain function) and body function. We seek every opportunity to help him interact with his environment and through your support he can achieve these goals that will have lasting affects.
