Welcome to Xavier Calvert Long’s page! We hope that you learn a little more about him and understand how you can help him achieve his goals and gain greater access to the world around him.
How it all began…Xavier is known by many nicknames (X, XC, XCL, Calvert, Cal, Bug Bug, Bubbas, “Bro-vi-er”) but “Fighter” is probably the most notable from the beginning. XCL was born a bit early at 25 weeks and then spent 109 days in the NICU fighting, sustaining, and then thriving. During that time and because he was so early, he suffered grade-four brain bleeding – the equivalent of having a stroke. These injuries affected his future neural development, the extent of which could not be fully determined. This then led to him later having a neurologist diagnose him with cerebral palsy.
Updates (8)
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.
Photo Galleries (3)
Guestbook
April 9, 2024
STAY STRONG BUDDY
Randall Baird
March 20, 2024
Hang in there buddy you got this
Randy Baitd
December 29, 2023
Keep keep keeping on, Xavier! Pawpaw would be proud of you! Happy new year, nephew!
Jessica Long
