California Dreaming

As I fly home from CA with Colby, splitting up our family yet once again, I think back at what a great week we all had together. A successful first flight post-injury that turned out to be easier than we thought thanks in part to the entire Delta airlines crew. A smooth drop-off of our accessible chariot for the month by MobilityWorks made getting to the clinical site and our temporary West coast digs in beautiful San Clemente a breeze.
We were able to meet with some of the NeuroRecovery Technologies research team on our first day there. They reviewed Ryley’s overall health and updated his ASIA Score (This is a system of tests graded between A and E used to define and describe the extent and severity of a patient’s spinal cord injury. Grade A is a complete lack of motor and sensory function below the level of injury…where Ryley has been. Grade E is when all neurologic function has returned ). Gotta tell you, first time I’m happy with Ryley being a B versus an A! This is a great sign that he continues to strengthen and improve even before starting the trial!
Took a little needed R&R on Monday and headed to the San Clemente Pier to take in some beautiful views and grabbed a bite to eat.
Tuesday/Wednesday Ryley was able to work with the trainers of Strides SCI. Things went great and he will work with them throughout his time in the trial. Great people that really know their stuff when it comes to SCI and will be working hard with his movement!
Wednesday afternoon we picked up Will at the airport fresh off his graduation from UNCG and decided to head up to Beverly Hills to take in the sights. Our “tour guides” Craig & Kim Whichard made sure we saw everything from the Beverly Hills sign to the Hollywood sign…we crammed a lot in…although Rodeo Drive was a family fav! Both Ryley and Colby found themselves in Dior window shopping with a personal shopper in tow. Not sure if they knew what to make of the two of them nonchalantly looking at a few items with a price tag having five zeros… never knew there was such a thing as a fossilized water watch. I was relieved that the two bags they came out with only had catalogues and some perfume/cologne samples. PHEW! Although no star sightings, we did see the CEO of Dior who happened to be there for their Spring line rollout. Of course Colby chatted up some of the entourage about attending the Textiles College at NC State…she left with a Dior business card…that’s my girl…I smell internship! The wealth in this town was literally unbelievable! Seeing the cars let alone was worth the trip…got to see how the 1% of 1% lives I suppose. I tried to ask the guy in the Ferrari if he wanted to sponsor #TheFight4Ry but the engine noise drowned me out…???? Fun times!
Thursday we got up bright and early and headed to the mission of San Juan Capistrano for a little history lesson of CA before heading to Ryley’s first session of the trial. This visit was to use the actual NeuroRecovery spinal cord stimulation technology to obtain Ryley’s baseline responses for the rest of the trial. Ryley was literally receiving controlled shocks to his system. How does it feel Ry?…weird… he said he felt his whole body tingle. We even saw some controlled (not spasticity based, as he often has in his legs) movement in his hands! This is a great sign that his overall nervous system is intact and willing to play along with the therapy. The technology is based on the theory that our spinal cords are able to “take over” for less critical functions as it learns from birth on. To explain, let’s take the analogy of cloud computing. The brain is acting as the “cloud” and the spinal cord is the “hardware” with its own basic operating system that evolves as we age and begin to walk, etc. So as you or I start walking, the brain may start the process but once up and going the spinal cord takes over only going back up to access the cloud (brain) if needed…say if you trip off a curb or get too close to the stove burner. The response is instantaneous and the brain sends the proper signals to prevent the fall or to move away from the pain of the heat. The “memory” of controlled thoughtful movement still resides in the spinal cord but it can’t “re-start” because the electric signals from the brain can’t get through the area of Ryley’s injury (C6 vertebra burst fracture…C5/C4 spinal cord injury level given post-injury swelling and scar tissue build-up). Ryley actually died on the pool deck the day of his accident after going into cardiac arrest. When the body has trauma like this the brain shuts down all non-critical functions saving ever bit of power for itself. As he was revived, the brain begins to “reboot” things…heart beating…check….lungs breathing….check…but outside of that the brain couldn’t send the signals past the spinal cord injury…leaving the area below that area, in a way, dormant…waiting for orders from the brain. This technology and trial are attempting to prove this overall theory. For those of you following along with this, you are probably asking, okay Tim but what happens when you turn the stimulation off…the brains signals still can’t get through…great question you inquisitive bunch…but one step at a time. Right now we want to keep the area below Ryley’s injury “exercised” and ready for what’s next. But there are also some previous patients retaining some improved function, post-trial. The ultimate “cure” for SCI is combining the stimulation technology with the ability to “re-grow”/replace the damaged axons (the stuff that makes the spinal cord do what it is supposed to do). Once an axon is injured it creates the scar tissue that blocks the electrical signals from the brain to extremities that you and I take for granted each and every day. This is where stems cells, implantable flexible circuits, etc. come in. Combine “patching/bridging” the injured area with stimulation and a regimen of weight-bearing PT and B-A-M you’re on the fast track to recovery. I also personally believe adding a healthy dose of virtual reality of walking/grasping/etc. to the mix will ramp up the recovery process. So although the current trial Ryley is participating in won’t be the complete answer, he is helping to advance the research in this area to ultimately find a cure for SCI. One that will not only help my boy but everyone impacted by SCI.
Ryley needs to keep working hard and keep up the specialized PT which is not cheap but will increase his chances for future recovery. That’s why we are so grateful for the continued support so many people continue to provide. The latest fundraiser is being organized by Jill Greathouse, Trali Irish Pub and The Portraits at Trali a Benefit Concert for Ryley Hopper for what is shaping up to be a great evening on Saturday, June 3rd – Ryley Hopper – HelpHopeLive Benefit. Please mark your calendars for an evening of great music, drink, food and friends raising a glass to support Ryley’s epic journey ahead. If you can’t come you can still support Ryley here: and/or if you have any items you feel would be a great addition to the raffle prizes, please reach out to Jill and let her know!
I will continue to provide updates on Ryley‘s progress in CA while he’s gone as I’m able and provide updates on the progress here at home. Speaking of which, the lift up to the second floor was completed while we were in CA! Really cool “thru-the-floor” lift that will finally get Ryley upstairs. Things should really accelerate from here to be ready for Ryley and Kim‘s return on June 3rd and for “The Whole Shebang” on Saturday, June 10th…basically a day of celebration for Will’s graduation from UNCG, Colby’s graduation from Leesville Road High School and Ryley’s return home and to the second floor of the house!!! Come & go and you please and enjoy some food, drink and laughs…if you know us…you know where to find us… 🙂

That’s all for now. Thank you all SO very much for your continued support of my family! I love you all.

Happy Mother’s Day to all you Mom’s out there!