Progress

February 2012 Update

Cruise is doing amazingly well….producing music and  music videos,  taking an online  Professional Music Production course from Berklee College of Music / Boston ,  editing the music and videos (all with a reflective dot on his forehead that  controls his mouse and his right shoulder that clicks it with an ingenious  arrangement that his dad, Tim set up), attending events with friends who  transport him in his mobility van, and trying to get a clothing line business,  College Lyfe, off the ground as well.  Needless to say, he does not sit “idle” in his chair! He continues to ‘work out’ at Neuroxcel gym in North Palm  Beach 4-5 days a week,  he’s on the Locomat, a robotic driven gait training system (www.neuroxcel.com), and other pieces of equipment  that are helping him gain strength,  as well as seeing a neurological  chiropractor, Dr John Conde, right here in Delray.  (See http://thecondecenter.com/treatment.html)

• December 16, 2008, injured while skimboarding, resulting in a C-4 burst requiring 6 hours of surgery to remove the C-4 and two discs and replace them with a titanium cage between C-3 and C-5 and pins in the back to stabilize for rehab/Delray Beach Medical Center. Next time we saw him he was on a ventilator, feeding tube, splints on hands and boots on his feet and machines beeping and buzzing all around.  We wouldn’t hear his voice for 6 weeks.
• December 20, began weaning off ventilator.
• December 24, got tracheostomy to replace breathing tubes down his throat, made it easier to wean off the vent and could communicate better, though still no voice
• December 31 left his many friends and familiar surroundings to start rehab at Shepherd Center in Atlanta via Medcu Leer Jet with parents, (sisters drove from Delray Beach to Atlanta the next day)
• December 31, after finishing tests, a move toward independence with an air operated (sip and puff) TV and nurse call
• January 4, cousin, Kristi Vick talking about the first Cruiser Palooza Fundraiser
• January 5, moved to the spinal cord floor from ICU to begin therapy
• January 16, friends visit all the way from home.  Oh HAPPY DAY!! The start of several groups of visitors over the next few weeks, in the midst of which he had the trach plugged and we could hear his voice for the first time in 6 weeks!
• January 24, 2009, the 1st Annual Cruiser Palooza was held in Delray, a huge success for raising funds to assist Cruise with costs related to his injury. Hosts Kristi and Ellery Vick
• February 2, introduced to Dragon Speak, assistive technology, voice activation for using the computer
• February 21st the Bru’s Room and Delux Fundraiser by Matt Spector and sister, Kaci
• March 18th flew home with sister Rickie, to a ramp Tim (Dad) built at the front door and one in the house.
• April –June 2009 house modifications, Coastal Construction added 12’ to south side of house to allow for an accessible room and bathroom. John Murphy, Simon Architect, Obrien, Suiter, Obrien surveyors all donated their time and efforts!
• April 21, 2009 outpatient Physical and Occupational therapies begin at Pinecrest Rehab Hospital in Delray
• June, 2009 began painting, ie Sailfish and Dolphin, now on tshirts selling for raising funds
• June 7, 2009, Carnival for Cruise held at the Flotilla Club in West Palm Beach, hosted by the Wendy, Chad and Cliff Boady family…. Another success in spite of the rain!
• November 8, 2009, Cocktails for Cruise @ 32 East, downtown Delray, hosted by Holly Carlson with local musicians.
• August, 2009 – October 2010, working out at Neuroxcel Gym, North Palm Beach to help regain strength and mobility through working on specialized equipment like the Vortex, Ergys2 bike, VitaGlide, Total Gym and Locomat, a robotic driven gait training system.  For more info www.neuroxcel.com
• October, 2009-November 10, 2010, seven months after getting home, nurses every day paid for by Medicaid, until his 21st birthday
• November 11, 2010, Cruise turns 21 and loses all nursing care through Medicaid. Any nursing care is now paid out of pocket.
• January 30, 2010, the 2nd Annual Cruiser Palooza held and another terrific success
• August – December, 2010 biofeedback therapy at Brucker Biofeedback Institute, Miami
• November 10, 2010, Putting Around Delray Fundraiser.  Fantastic!
• February 12, 2011, 3rd Annual Palooza held and another tremendous success.
• March, 2011 video editing course online
• March 26, 2011, Cuts for Cruise hosted by Rachel Kenney @ Salon Elite in Delray.  Electric energy from all involved!  Another great success!
• May 2011 paying caregivers
• September 15, 2011- Present, back to Neuroxcel for continued work to regain strength and mobility
• September 2011, Cruise approved for Medicaid Waiver, personal care aids coming a few hours a day. Still paying for help caring for Cruise during the day to get him to and from the gym so that Tim and Billie can both work

 

August 2009

Cruise’s Healing Process/The Fight to Improve Cruise’s Condition: We are heading into a very exciting time for furthering Cruise’s development. You may be interested to hear about the three types of therapies Cruise is currently embarking on. But first, some background. He is now 8 months post injury, and though it seems like just a short time ago that our lives changed forever, it really has been quite some time getting acclimated to this new lifestyle that our family leads. Physicians and therapy have finally been set up. Much of Cruise’s time has been spent in bed with a battle against pressure spots on his sit bones, (mostly as a result of losing close to 50 pounds, thus having no natural cushion–hard lessons learned there). But now Cruise is beginning a schedule of promising therapies, most of which are private pay since insurance has paid their allotment for therapy for 2009. As much as we had hoped to be able to conserve as long as possible the funds raised during the four fund–raising events for Cruise held to date, it will be necessary to begin using the money for these therapies.

Back in December, when Cruise’s accident occurred, he was initially diagnosed as having a ‘complete injury’, defined as having no sensation or mobility below his level of injury, C4. However, Cruise has both sensation AND some mobility below his injury. His physiatrist, rehab Dr. Jeff Farber suggests that Cruise’s injury seems to be more like a C5/ C6 injury, given the movement he has now. His right biceps continue to get stronger so that he is able to move his lower arm a little bit to the side with the help of his shoulder movement he has had since he was first injured. He has some triceps, more in the left arm than the right, and his deltoids are also firing with the help of a piece of equipment called the Deltoid Aid, a sling that allows him to swing his arms to the sides without having to deal with gravity and the Mobile Arm Support that allows his arm to move with the bicep, shoulder and deltoid movement he has. All of this was first detected in Atlanta at Shepherd Center during the two and a half extremely beneficial months spent there, Cruise went to outpatient therapy here and was on the tilt table (to help regulate his blood pressure) and used the mobile arm support to help strengthen his right arm with the ultimate goal of being able to write, type and feed himself.

We have been very fortunate to have found a terrific Physical Therapist here in Delray, Ray Cralle, whose treatments are very “outside the box”. He’s the first professional to challenge the diagnosis that Cruise’s injury is a complete injury. One of his treatments is to ice his lower leg and top of his foot, then apply strong vibration to the same area to stimulate the sensory and motor nerves, encouraging movement in his toes, ankle, knee and hip, stating that if he was a complete injury, there would be no movement and Cruise’s toes, ankle, knee and hip all respond very well to this stimulation! He also gets Cruise to move his legs, one at a time, by aggressively throwing his bent knee across the other leg that’s straight on the table, and with the turn of his head, Cruise is able to bring his leg back, time and again! This is difficult to describe, but absolutely amazing to watch! He tells Cruise, “You can’t run a marathon without training really hard, and you can’t get mobility without a LOT of work either.” Cruise would like to work with Ray twice a week, and possibly try his hyperbaric chamber to see if there might be some benefits for a spinal cord injury as there are for brain injuries since oxygen therapy is known to be very healing. Given Dr Cralle is world renowned, the cost of treatment with him is prohibitive. One session of myofacial release with him is $200 and one of the ice/vibration and electrical stimulation is approximately $120. This is when we thank all of our friends, family and strangers who have made donations to Cruise during fundraising campaigns, as without the fundraising this very promising therapy would not be possible for us.

Neuroxcel is a brand new gym that has opened in North Palm Beach and will capitalize on the mobility that Cruise has and will try anything else they can to help Cruise gain back all that he can. This gym is primarily for spinal cord injuries and has some amazing equipment that most rehabilitation gyms do not have. This is not a rehab center. Neuroxcel was started by Tom Mullin, whose brother Kevin suffered a spinal cord injury about 5 years ago. After much therapy here in Delray and in Utah, Tom traveled the world meeting with rehab centers, the best therapists and doctors to research how he could help Kevin. This is a culmination of that research and he himself has funded the best equipment available to people suffering with different levels of injury, which includes the Power Plate that stimulates all muscles in the body with vibration and the Locomat, a robotic walking machine that facilitates reeducation of the brain and teaches one to walk again. There might be 2 others in the state of Florida, one being at the Miami Project and is used mostly for research there. This is a marvelous opportunity for Cruise to strengthen any muscles he has working for him and socializing with others who are motivated to move again after similar catastrophic injuries. Cruise tries to go to Neuroxcel 5 days a week when possible and work with the Mobile Arm Support supplied to us by Florida Brain and Spinal Cord Injury Program, the tilt table that my nieces and nephews donated to Cruise as their birthday gift to my sister this year, the Power Plate, and other equipment that Tom has acquired specifically for Cruise since he has the highest level of injury, the others have a lot of use of their arms and are able to use equipment Cruise can’t use yet, like the Locomat. It is Tom’s intention that Cruise will at some point be able to use this and other equipment, but after much strengthening. Once again, this is a private pay facility. Since Cruise is unable to use the Locomat, a $400,000 piece of equipment, we will pay only $1800 a month instead of $2500.

This week, Cruise went to aqua therapy for the first time at One to One here in Delray. We are very excited about this as, in the water, his therapist can work muscles Cruise doesn’t even know he has, without having to deal with gravity. He has been unable to stretch and move this way in 9 months. He will go once a week for a couple of months to see what the benefits really are for him in the water. This is also private pay @ $100/hr.

View pictures from Cruise’s Gym

Personal Care Attendant (PCA):

Cruise recently had an assessment with a Home Healthcare Agency for acquiring a Medicaid provided Personal Care Attendant, which will allow me to go back to my regular work schedule and time for Tim and I to do work around our home which is in dire need of attention. Since he is under the age of 21, Cruise is eligible for a trained nurse and/or aid to assist him throughout the day with all of his daily needs, a long needed first step towards independence from his parents that he’s totally ready for! His sister, Kaci, has really stepped up to the plate by helping on our workdays and she’s now taking him up to the gym on days she is not working. Florida Medicaid will dictate how often Cruise will get a PCA, but it could be as much as 24 hours a day, 7 days a week, or as little as 3/12 hour days. The process of finding the right “fit” for Cruise is a daunting one, especially here in South Florida where nursing care is not the best to start with, but a start towards his independence.