Update letters
Dear Friends,
It is June 2006, four years since Ross was injured by a car that drove into the bike lane where he was riding. We are happy to report Ross is continuing to make wonderful progress in his rehabilitation. He is making steady gains in language, cognition, gross motor and fine motor skills.
Ross is talking to his family and caregivers throughout the day. He is stimulated by hunger, fatigue, love and confusion. He often breaks through with new words when he is frustrated. A recent example: Rusty (Ross's dad) gave Ross a sip of his coffee. When Ross gestured for more, his dad told him to ask for it. Finally, in frustration, Ross said, “I am not stupid. Give me more coffee.” Ross likes routines and he reminds his family as mealtime approaches. He will say, “Food; food now.” Or “Food in my mouth.” He is now telling them when he is tired. He still uses the less specific “Go home,” but he also says, “Go to my room” or “I am tired.” Many times a day, he tells someone in his family, “I love you.” He says, “Thank you” for small things like putting his shoes on, taking them off, or adjusting his pillow. He also loudly says, “Stop, that hurts!” when they wash his ears. Ross frequently says, “Who are you?” “I am home.” Or “Give me my name.” The other day when he asked for his name, the caregiver showed him the sign that says My Name is Ross Dillon. Ross read it and said, “When I first heard my name, it was so funny I just about choked.”
Ross's cognitive advances are seen in his speech and also in his coping strategies. He regularly uses his right foot to lift his left foot and recently has been opening his left fingers with his right hand. The man who was the first Emergency Medical Technician on the scene when Ross was hurt donated an old electric wheelchair. Rusty recently serviced it in order to see if Ross could use the controls. Ross immediately picked up on how to guide the chair using the toggle switch. He now travels around the driveway knocking down cones that have been set up for him and even steers between the cars to go back to the garage.
Ross's motor skills development is exciting. He is working on learning to walk in a gait trainer. He is moving his right foot, but still needs help moving the left one. He is able to move his left leg when it is not weight bearing. Another big advance in the last year is small motor skills. Using his right hand, Ross feeds himself with a spoon and can pick up a little gummy bear with his fingers and put it in his mouth. He picks up wooden blocks and puts them in a container. He picks up small things with tongs and releases them. He opens jars with lids to get to the treats inside. Ross really likes to work with form puzzles with knobs on the pieces. Recently, the caregiver lined up the pieces on the table, but turned them so Ross would have to work harder to put them in. Ross picked up the first puzzle piece, rotated it 180º by rotating his wrist, placed the piece in the hole, laughed and said, “I moved my hand.”
When we look back, we can see how Ross is working hard to regain function. When his parents brought him home three years ago, he could only move his eyes. Two years ago, he had started to eat, kick with his right foot and knock cones over with his right hand. One year ago, he was mouthing words and beginning to move the fingers on his right hand. His therapists have said they don't see a ceiling to his progress. At the end of 2004, we believed his next big achievement would be speech. Six months ago, we started to gear up for helping Ross relearn to walk. That continues to be a major focus, and hope.
Team Ross
Ross still requires around the clock care from his family and caregivers. He receives physical therapy four times a week, occupational therapy two hours a week, speech therapy once a week. He sees the chiropractic neurologist once a week, an acupuncturist once a week, the neurologist once every two months, and his neurosurgeon once a year. Ross's parents have also started consulting with a neuropsychologist as Ross gains more cognition and voice. His parents and caregivers work with him daily on exercises that his therapists prescribe. Ross is working therapeutically at least six hours a day.
Helping Others
Betsy, Ross's mother, continues to correspond with other parents, offering specific information about supplements and therapies that have helped Ross. As one doctor said, “These individual brain injury patients are teaching us what works.” Betsy has been in touch with parents and spouses in California, Oregon, Washington, Iowa, Hawaii and England. In fact, one of Ross's doctors has referred other families to the Dillons for information. In Hawaii, the mother of a four-year-old girl modified the way she used a biofeedback unit after Betsy told her about median nerve stimulation. The mother reported that her daughter made significant improvement in a short time. Another mother wants to start giving her son real food, instead of formula, through the feeding tube. Betsy explained to her how she had switched Ross from formula to real food through the feeding tube when Ross first came home. As Ross's mother says, “This is a hard and lonely road we are traveling, and talking to someone who has experience helps. We have been blessed by people reaching out to us.” People have written to the Dillons to say that reading of Ross's progress has given them hope for their loved ones. We believe the networking of families will profoundly benefit the future rehabilitation of brain-injured individuals.
Ross's family writes,
Ross continues to inspire us. His persistence, his strength, and his loving
gratitude are the building blocks with which his therapists work. When
Ross smiles, says, “Thank you” and returns to the task at hand, he is
confirming that he is ready for the long road to recovery. We are grateful
for the love and support we have received over the last four years.
We could not do it alone.
2005 FINANCIAL SUMMARY
You, Ross's extended team, were very generous in 2005. Total non-reimbursed expenses for the year were $123,306 (including $2,810 for a gait trainer), which is almost $5,000 less than total non-reimbursed expenses for 2004. The main difference was that Betsy did more of the round-the-clock caregiving when some of Ross's caregivers couldn't fulfill their scheduled commitments. Most of the 2005 rehabilitation expenses were covered by 237 separate donors, up from 161 in 2004. Total giving for the year was $110,921, up from $97,903 in 2004. Almost all contributions were in the $10 to $1,000 range, with a few contributions from $1,000 to $5,000 and one for $25,000. Ross also received $11,148 from SSI, almost the same as in 2004. The Dillon family expects that non-reimbursed expenses could increase by as much as $30,000 this year, roughly half of the increase being the cost of a motorized wheelchair (see below), the other half in increased costs for professional therapy, supplements, and caregivers.
GOING FORWARD
As Ross progresses, he needs more therapy and more assisted daily practice. An assistant is being trained to help Ross's caregivers, therapists and parents with exercises that require up to five people. For example, when Ross is freestanding, it takes five people to provide support and make sure that his feet, knees, hips and shoulders are all in good alignment for weight bearing.
Toward the end of this year, Ross will need a new motorized wheelchair (cost: $15-20,000). The chair previously donated has allowed his therapists to determine if a motorized chair is appropriate for him. Not only is it appropriate, but also they believe that the increased independence and process of learning to control the chair will actually aid Ross's cognitive rehabilitation. The family has also recently purchased a biofeedback unit at the recommendation of the neuropsychologist (cost: $3,750).
Last year the family requested parallel bars, a gait trainer and a spin cycle for Ross. The family purchased the gait trainer in December 2005. They received the donation of used parallel bars from a local physical therapy clinic and a brand new spin cycle from Greg Lemond. Ross pedals on the spin cycle for one hour six days a week. He uses the gait trainer during every physical therapy session, four to five times a week, and the parallel bars as appropriate.
I am asking you to continue your generous giving to assure that Ross can continue his miraculous journey, trailblazing the way for other Traumatic Brain Injury patients who presently languish in nursing homes, without hope. We hope that each donor will try to give as much this year as last, or possibly a little more. Without your help and the help of those like you, the Dillon Family would not have the resources Ross needs to continue his remarkable rehabilitation.
If you have any questions, please feel free to contact:
The Fund Advisor, Dr. Paul Popper at 415-753-8666 or at [email protected]
Ross's dad, Rusty Dillon at 707-953-9369 or at [email protected]" [email protected]
Ross's website www.rossdillon.com
Sincerely,
Paul Popper, Ph.D.
Fund Advisor
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December 2005
Dear Friends,
As 2005 draws to a close, it is time to update you on Ross's continuing and amazing progress, and provide you with a brief accounting of his expenses and the giving that is sustaining his care and rehabilitation. We are excited to give you the latest update from Ross's family and treatment team:
“The first half of this year was very difficult for Ross. In late January, his elbow was surgically repaired. The orthopedist cleaned debris from the joint. Because of the post-surgical pain and neurological spasms in his right arm, Ross was fitted for a cast. He then developed a large, deep, and painful pressure sore under the cast. He suffered intense pain for almost three months as his arm healed. We also discovered during this time that dental problems were causing Ross acute pain. Since he was unable to hold his mouth open for dental work, he had to be anesthetized for examination, x-rays, and the extraction of a molar that had cracked when he was originally injured. Treatment of other damaged teeth and cleaning required the coordination of the oral surgeon, our dentist, and the hygienist. The final work was completed in June. In addition, on May 5 Ross had a series of six grand mal seizures, each lasting eight to nine minutes. He was hospitalized for three days for observation and the treatment of low sodium levels (a byproduct of one of his medications).
After these trials, Ross's progress has really accelerated in the last five months. Ross started talking in July. This is momentous! Talking not only requires coordinating the flow of air across the vocal cords with word formation and the retrieval of words, but it also allows us to know what Ross is thinking and how he is processing information. His first words were “Stop,” “Please,” and “Everybody go home.” Now, all day long he tells us what he wants, and he also tells us what he thinks. Ben, one of his caregivers, recently asked him to lift his left arm. Ross's reply was, “I have no muscle now.” He also sometimes says, “I am a boy. Am I a man?” We believe this shows he is aware of his predicament, as he sometimes also says, “What am I supposed to do?” It is increasingly clear that Ross is cognitively present. In late July, the Occupational Therapist observed, “Ross's cognitive abilities have outpaced his motor skills.” This last week, Ross had two OT sessions where he demonstrated significant improvement in his ability to pick up and release objects with his right hand, to volitionally open the space between the thumb and index finger on his right hand, and to lift his left arm when asked. His drawings are becoming more complex and more circular and, if prompted, he can write “Ross.” He is able to sit in a kitchen chair with supervision for at least thirty minutes. His biggest challenges for the coming year are to regain the ability to retrieve more words, to regain fine motor skills, to stand with minimal support, to sit in a conventional chair without support, and to walk.
Ross's success is being sustained by your prayers and generosity. There has been a dramatic and positive change in the attitude of Ross's physiatrists and neurosurgeons. Whereas in the year following his injuries his treating doctors were giving him the gloomiest prognosis, they are now enthusiastically cheering Ross and his team on to further gains. In fact, the doctors who originally declared Ross's case hopeless are now referring traumatic brain injury patients and their families to the Dillons for guidance in setting up and operating subacute rehabilitation efforts in their own homes. To be able to do this for others has been a major goal for Ross's family and The Dillon Family Fund. All of us who love Ross and his family continue to be very grateful that their faith is being rewarded.
THE FINANCIAL SITUATION
While Ross is making wonderful progress, he has a long journey ahead of him, through which he will continue to be dependent upon the generosity of his support community. The basic financial situation remains close to the edge. After exhausting his private insurance, Ross's Medi-Cal and Medicare fall far short of the level of need. This year's expenditures will be around $117,000, with SSI providing $11,144. The expected increase in costs for 2005 did not occur, mostly because two of Ross's therapists weren't able to give Ross as much time as Ross could have used. As you can see from the budget below, the largest ongoing expenses continue to be for caregivers and therapists. Ross requires in home care and companionship 24/7. Betsy continues to take shifts, in addition to preparing and managing all of Ross's specialized nutrition, supervising the overall medical and rehabilitation plan, interfacing with various doctors and therapists, and providing transportation for Ross to out of home therapy and medical appointments. All of this intensive support providing non-stop protection and encouragement is necessary to call forth Ross's best effort. In fact, as Ross improves, his need and capacity for more specialized therapy increases. Every waking moment is a therapeutic moment.
Cost Analysis for Care of Ross Dillon - 2005
(Real costs January 1- November 30; estimated for December)
Income:
SDI and SSI $11,144.00
Expenses:
Accounting $3,500.00
Supplies $1,485.00
Clothing $498.00
Cleaning Service $1,800.00
Caregivers $70,450.00
Medical/Dental not covered $1,500.00
by Insurance
Food $5,500.00
Medication $598.00
Supplements $10,625.00
Therapy $18,959.00
Extra Utility Costs $2,109.00
Total $117,024.00
Net Un-reimbursed $105,880.00
Ross's ongoing, net non-reimbursed expenses will be $105,880 this year, not counting capital expenses. Generous people have given $49,239 over this past year, as of November 30th. So there is a shortfall of $56,641 that the family needs help with for 2005.
Looking to next year, it is very difficult to see where any trimming of this budget could occur. Furthermore, the family anticipates an increase in 2006 of roughly $22,000 for doctors' bills, medications, supplements, and speech, physical, and occupational therapy. This in addition to any capital expenditures for necessary equipment, as mentioned below. Ross's parents continue devoting full time efforts caring for him, in addition to full time rehab coordination and house holding for Betsy and a full time psychotherapy practice and part time ministry commitment for Rusty. A measure of their constancy is that they've had only two weekends away from home since Ross's accident in June, 2002. They are not backing away from this challenge and know that they are sustained by God's grace expressed through your love, prayers, and financial support.
Next on the horizon for Ross is relearning to walk. Toward this end, his rehabilitation specialists tell us he needs three capital items: a rehab grade stationary bike, parallel bars, and a walking support-gait trainer. Their cumulative cost will be approximately $8,000-$10,000, in addition to the regular operating expenses detailed above. If you or anybody you know has any of these items that you could donate, the Dillon family would be deeply appreciative.
If you have any questions, please feel free to contact:
The Fund Advisor, Dr. Paul Popper at 415-753-8666 or at [email protected]
Ross's dad, Rusty Dillon at 707-953-9369 or at [email protected]
Ross's Website, www.rossdillon.com
Sincerely,
Paul Popper, Ph.D.
Fund Advisor
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August 2005
Dear Friends,
ROSS DILLON IS IN THE RACE OF HIS LIFE AND IS MAKING
WONDERFUL PROGRESS!
It is August 2005, three years after Ross suffered massive head injuries when he was hit by a car while biking, and two years since his parents brought him home from the hospital. His ability to attend has increased dramatically. A half year ago he started responding to questions by nodding or shaking his head or sometimes by responding to a YES or NO card presented to him. The frequency of these actions has increased progressively. As his mouth and throat became mobilized through the work with the speech pathologist and continuous stimulation at home (see “A day in Ross's life” for more details on the ongoing work being done with Ross), he started to show more facial expressiveness and to produce more and more sounds, eventually mouthing words. Beginning in August there has been an explosion in his ability to speak. Up to 50 times a day he communicates with words such as “please,” “stop,” “I love you,” “thank you,” and “go home.” His speech is appropriate to the situation, whether he is tired, hungry, or in pain. He can literally bellow out with a loud, deep, authoritative voice, “GIVE ME FOOD!” or he can delicately whisper, “I love you” to Jeremiah as his attendant enters his home to start working with him.
He is also showing that he is thinking on his own. One recent Monday, the speech therapist started to work with him on vowel sounds and Ross did not seem to be able to follow her instructions. On the following Sunday, Ross started laughing and said, “Did it.” Then he started saying the vowel sounds out loud over and over. He had been working on the vowel sounds by himself, all week! A few days ago Ross told Jeremiah, “I do not want to die.” The following day he told Jeremiah, “I want to live a long time.” He also frequently says, “I love people.” We believe this reveals that Ross recognizes that his life has changed profoundly, but still has a hopeful and loving spirit.
Let us remember where he started 3 years ago:
In the summer of 2002, two months after he was struck from behind by a car, Ross was constantly running a fever, in pain, and minimally responsive. He required feeding through a gastric tube for all of his nutrition, and his nourishment was a sugar based liquid formula. He was drifting in and out of a vegetative daze and had been given the gloomiest prognosis.
A year later, 2003, when he was brought home, Ross rarely looked past midline to his left, and could not move his limbs. Although he no longer needed a tracheotomy tube in his neck to be sure he could breathe, he couldn't accept anything in his mouth except a flavored swab during speech therapy.
The following summer, 2004, after doing daily physical therapy on the tilt table, in the standing frame, on the floor, etc., Ross was kicking a ball with his right foot, moving his right arm to hit plastic cones, and tracking his family and caregivers as they moved around the room. Moreover, after working with a speech therapist weekly and practicing daily with the help of attendants to mobilize his face, jaw and tongue, Ross had started to eat pureed foods by mouth.
ROSS'S TEAM
Ross receives 24 hours a day care from his family and dedicated attendants. He is also attended by a team of professionals, either in his home or their offices. He receives physical therapy four times a week and speech and occupational therapy once a week. He sees a chiropractic neurologist once a week. A medical neurologist (M.D.) who is also a trained acupuncturist sees Ross for acupuncture and a follow-up twice a month.
Dr. Deborah Swain, Speech-Language Pathologist, says:
“Ross has demonstrated spectacular progress thus far. Most important, he is communicating his wants and needs and responding accurately to questions. This would not be possible without the extensive and vigilant home program provided by his mother, father, sister, and aides. They consistently implement specific home exercises designed to supplement and enhance our therapy sessions. They see to it that Ross receives his therapy all day, every day. His progress would not be possible were it not for their commitment to his recovery.”
HELPING OTHERS
The Dillons are proving to be a valuable resource to other families facing similar circumstances to theirs. As the need surfaces, they respond.
For example, through her own research Ross's mother, Betsy, reasoned that magnesium supplementation might help reduce Ross's spasticity. After discussing it with Ross's doctor, they began giving Ross supplemental magnesium and it did seem to help him. When contacted by the mother of another traumatic brain injury patient, Betsy relayed this information and encouraged the mother to talk to her daughter's doctor about it. While her doctor had never heard of the nutritional supplement being used, the Dillons were able to furnish her with the references so that the mother and her doctor could pursue the question further. One goal of the Dillon family is to assemble a bibliography of books and articles on supplements and nutrition that could be helpful to traumatic brain injury patients, and post it on Ross's Website.
Betsy also received an e-mail from a father in Iowa who had found Ross's Website by Googling one of the supplements Ross receives. He wanted to know how much of the supplement Ross was taking. This led to a telephone discussion when the family decided to bring their son home instead of sending him to a nursing home. Betsy was able to answer his questions and make suggestions about equipment and the details of daily care for their son at home, and she is available to them as a support as they pursue this difficult but potentially rewarding path.
The Dillon family writes:
“The last three years have been a demonstration of how terrible tragedy and suffering can coexist with blessings and love. We were told three years ago that Ross had only a five percent chance of any improvement. Ross has not only defied the medical prognosis, but he gives hope to other families that people can heal after devastating brain injuries. We now see Ross's fun loving spirit and humor. As always, his indomitable spirit shines as he works to regain volitional control of his body and mind. Thank you all for your love and support. We could not do it without you.”
GOING FORWARD
While Ross is making wonderful progress, he has a long journey ahead of him through which he will be dependent upon the continued generosity of his support community. As he improves, he requires more and more specialized therapy in order to achieve independence.
You, Ross's extended team, have been extraordinarily generous.
During 2004, the majority of Ross's rehabilitation expenses were supported by 161 separate donors. Their contributions ranged from $20 to $1,500 per donor, with two donors giving $10,000 or more each. The total non-reimbursed expenses for Ross in 2004 were $124,087 plus roughly $4,000 in one-time capital costs. Ross received $11,148 from SSI, and the Dillons received $97,903 in donations. The Dillon family made up the difference. They anticipate that non-reimbursed expenses will increase this year by approximately $20,000, due to increased use of rehab professionals and increased cost of supplements.
Next on the horizon for Ross in his journey back is relearning to walk. Toward this end, his rehabilitation specialists tell us he needs three capital items:
Parallel bars $2,500
Walking support - gait trainer $3,500
Stationary bike - rehab grade $3,000
If you or anybody you know have any of these items that you could donate, or if you would like to make an earmarked contribution, the Dillon family would be deeply appreciative.
I am asking you to continue your generous giving to assure that Ross can continue his miraculous journey, trailblazing the way for other Traumatic Brain Injury patients who presently languish in nursing homes, without hope. We are hoping that each donor will try to give as much this year as last, (or, if possible, even a little more.) If that happens, and if a few more people are moved to contribute, Ross will have the resources he needs to make as much progress as possible.
If you have any questions, please feel free to contact:
The Fund Advisor, Dr. Paul Popper at 415-753-8666 or at [email protected]
Ross's dad, Rusty Dillon at 707-953-9369 or at [email protected]
Ross's Website, www.rossdillon.com
Sincerely,
Paul Popper, Ph.D.
Fund Advisor
December 12, 2004
Dear Friends,
We wanted to write you again to give you a brief accounting of Ross Dillon's 2004 expenses and the giving that has allowed his family to continue his care and rehabilitation. As you know, Ross suffered devastating brain injuries when an inattentive driver who drove into the bike lane where he was riding struck him from behind. You may recall that the Dillon family has asked me, Paul Popper, to periodically report to you on Ross's condition and progress. But first here's a fresh update from Ross's family:
Ross now sticks out his tongue on command. When we saw the neurologist on Wednesday, he asked Ross to stick out his tongue and he did. For the last two and a half years, doctors and speech therapists have asked him to do that and he couldn't. The neurologist also asked him to raise his right hand and Ross did it without hesitation. He also shrugged his right shoulder when we asked him if he wanted to stop on the way home from the doctor's. He is standing taller in the standing frame and sitting taller in his wheel chair. Rusty saw him stretch while sitting in the wheel chair. Ross moved his arms out and stretched his spine, something we have not seen before. Yesterday, the nurse observed him moving his head side to side as he was listening to music. He now can roll from his back to his side when on the floor without any assistance. He is biting and chewing. He continues to enjoy rice cakes with soft cheese, peanut butter or butter. He is also chewing his food. He has been eating meat loaf, green beans (cut into pieces about an inch long), and salad. For breakfast last week he ate an entire breakfast burrito. We just cut it and gave it to him. He is drinking more unthickened liquids at a time. He is nearing the point when his feeding tube can safely be removed. His communication is more and more reliable. He is using head movements (nods and shakes), touching icon cards, or if he is just too tired, he looks at the answer. Bryan, one of our caregivers, lets Ross hold the telephone shower when he gives him a bath. Last night, Ross was squirting water in his mouth and swallowing it. We now ask him if he wants his right arm splint on. The elbow sometimes hurts and we think he will have to have surgery in order to fully extend and use his right arm. He communicates yes or no about whether he wants to wear it. Ross woke up laughing yesterday, and he laughed a long time. His whole face was more balanced, relaxed and his mouth opened wide giving deep belly chuckles. All of his emotions are more pronounced and we are seeing more of the Ross we know.
The big news is that Ross appears to be on the verge of talking. He spoke a complete sentence a couple of months ago, he occasionally says a word, and he frequently mouths phrases like "I love you" or "Help me". His therapists and his doctors are excited about his progress. He is standing with minimal support in the standing frame and his physical therapists think he is ready to start relearning to walk with special sling support. He is also playing games with his family and caregivers. For example, he plays a game of kicking the ball when in a circle with three other people; he does side kicks as well as toe kicks. Another game he enjoys is hitting a balloon back and forth with another person at close range. Ross has clearly made another growth step in thinking, planning, and follow through with games.
All this is great news and represents an accelerating curve of improvement for Ross. All of us who love Ross and his family are very grateful that their faith is being rewarded in such a tangible way. Indeed, it is a lesson in faith for all of us.
While we are thankful, we also know that this home care and rehabilitation effort is very expensive. A further complicating factor is that Ross's private medical insurance has expired, leaving him with a combination of Medi-Cal and Medicare that falls far short of the previous level of reimbursement. In the coming year, Ross's family will have to pay for all therapy without any private insurance support. As you will see in the analysis detailed below, the largest ongoing expense is for caregivers and therapists. Ross requires in-home care and companionship 24/7. In order to reduce costs, Betsy takes two night shifts (12 hours each), one day (12 hours), and two half days (4 hours each). This is in addition to preparing and managing all of Ross's specialized nutrition, supervising the overall medical and rehabilitation plan, interfacing with various doctors and therapists, and providing transportation for Ross to out of home therapy and medical appointments (at least 3 trips weekly). All of this intensive support is to provide non-stop protection and encouragement in order to provide the environment that calls forth Ross's best effort given his current state of healing. This all could be characterized as raising and caring for a 6'1" infant whose path of development is random and non-linear, requiring constant experimentation and adjustment. Ross' survival and improvement have surpassed the limits of current medical understanding and prognosis.
None of the ongoing expenses detailed below are covered by any insurance. We have not included any capital expenses in the following analysis for two reasons. First, they tend to be one-time expenses and thus not predictive of future, ongoing costs; and second, some of these items, like for example the Hoyer lift and hospital bed, have been donated by generous and loving people who have learned of Ross' needs. The two capital expenses this year were the pedaling machine that Ross has been using since early in 2004 and the used standing frame that his family was able to purchase. Together these two pieces of equipment cost nearly $4000.
Cost Analysis for Care of Ross Dillon - 2004
(Real costs January 1- November 30; estimated for December)
Income:
SDI and SSI 11,144.00
Expenses:
Accounting, Paper Processing,
Managing Special Needs Trusts 2256.00
Bedding 185.00
Clothing 498.00
Hygiene Supplies 690.00
Equipment, Non-Capital Replacements 500.00
Cleaning Services 1728.00
24/7 Care
Nursing 10,968.00
In Home Care Aides 64,814.00
Insurance Premiums (For private insurance that has 4792.00
now run out)
Medical not covered by Insurance:
Doctors, Dentists, Special treatments 1437.00
Food 5646.00
Medication 1420.00
Supplements 5825.00
Therapy
Speech Therapy 3284.00
Physical Therapy 6605.00
Occupational Therapy 1804.00
Massage 225.00
Extra Utility costs 2109.00
___________________________________________________________
$114,786.00
Net Un-Reimbursed Yearly Expense, 2004
$103,642.00
As you can see, Ross' ongoing, non-reimbursed expenses were $103,642 this year, not counting capital expenses. Generous people have given $24,690 over the past year, as of December 1st. So there is obviously a shortfall of $78,952 that the family needs help with for 2004. Looking to next year, it is very difficult to see where any trimming of this bare bones budget could occur. Furthermore, the family anticipates an increase next year of $11,500 cost in doctors' bills, medications, supplements, and speech, physical, and occupational therapy, due to the fact that Ross's private medical insurance has expired. This does not include the costs for arm surgery and rehabilitation that cannot be estimated at this time. Ross's parents are devoting full time efforts caring for him, in addition to full time rehab coordination and house holding for Betsy and a full time psychotherapy practice for Rusty. A measure of their constancy is that they've had only one weekend away from home since Ross's injury in June 2002. They are not backing away from this amazing and harrowing journey with Ross and know that they are sustained by God's grace expressed through your love, prayers and financial support.
Sincerely,
Paul Popper, Ph.D.
Fund Advisor
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October 25, 2004
Dear Friends,
Ross has been home for a year and he just had his 28th birthday. As you know, Ross suffered devastating brain injuries on June 2, 2002 when he was hit by a car that drove into the bike lane where he was riding. Ross is making amazing progress and confounding those who said there was no hope for recovery. In fact, some of Ross's therapists have said his case should be documented for the medical profession.
How is Ross doing? In a word: AMAZING!
Here's what his two lead therapists have to say:
“It is the environment that challenges the brain to heal and restore
function." I learned this in PT school 7 years ago, however it is because
of Ross's remarkable progress that I now truly understand the importance of a loving supportive environment, a committed team of professionals and caregivers, and an environment that is structured to help the brain heal. I have worked in hospital brain injury rehabilitation clinics and have felt the frustration of poor outcomes because the environment was only therapeutic for a few hours a week. The difference is clear and the results of Ross's progress demonstrate that the strategies and care giving that Ross is receiving because of the generous donations are not only helping Ross to recover but also will contribute to changing the way professionals treat brain injuries in the future.
Jeremy Nelson, Physical Therapist
The recovery from traumatic brain injury is a process that is uncertain for both the patient and their families as well as the professional involved in the care and rehabilitation of each patient. I have been a speech-language pathologist for more than 20 years. Traumatic brain injury rehabilitation requires knowledge, expertise, creativity, and risk taking.
These skills have been used in my treatment of Ross. Ross sustained extensive injury to his brain as a result of his accident. This damage affected not only his physical/motor and communication skills but also his ability to eat and swallow. When Ross first came to our center he was being fed with a feeding tube and was unable to move his tongue and lips. His improvement thus far has been nothing short of remarkable. He no longer requires a feeding tube for his food intake, is able to move his lips and tongue, and is able to chew food. I have never seen anything close to this during my years in practice. His improvements are steady and impressive. The care provided by all of the therapists, his parents, friends, and aides have contributed to his remarkable progress. The generous donations of funding and time have made a huge contribution to his ongoing progress. We know that this is only the beginning!
Dr. Deborah Swain, Speech Pathologist
In other words, when his parents made the terrifying and necessary decision to bring Ross home instead of placing him in custodial nursing home care, they found themselves, with God's grace, able to construct and sustain a home-based, sub-acute care and rehabilitation situation for Ross that has optimized his recovery results and potential. His therapists, and they are some of the best, are telling us that no rehabilitation institution could provide a better healing environment and results than what is being provided for Ross at home.
Ross's “steady and impressive” improvement is beyond the medical prognosis received early in this journey. Now as a result of God's grace expressed though your love and support to Ross, his family and care team, Ross is getting better and other families are benefiting from what the Dillons are learning.
Ross's family says,
The day-to-day changes we see are remarkable. When Ross came home in June of last year, his doctors gave him a very poor prognosis for any improvement and regarded us as a grief-stricken family unable to “let go” and face the tragedy that had befallen us. And indeed Ross didn't look good. He spiked fevers every day or so and had regular bladder infections. He required feeding into a gastric tube for all of his nutrition and fluids and his nourishment was sugar-based liquid formula. We were warned not to put anything into his mouth for fear he would surely aspirate and get a fatal pneumonia. He was drifting in and out of a vegetative daze and, while apparently awake, he was not very responsive and certainly incapable of purposive action. His right side was contracted with some minimal movement while his left side was “toned out” in extension. When supported in a sitting position, he couldn't hold up his head or exert any trunk control. His digestive system was constantly upset and his only sounds were cries of pain. He was awake most of the night and dozing through therapy during the day. We were overwhelmed for weeks; but we believed that there was a fundamental rightness to having him home and giving Ross our best effort. We had no idea what lay ahead, but we believed home was far better than a nursing home.
Then with God's grace the blessings began to flow for Ross, and not a moment too soon because taking care of Ross is very daunting and exhausting. We had to turn Ross every two hours and move his limbs that were stiff with contractures and spastic tone. At that point he only moved his eyes, and rarely moved them beyond midline. Dear people who had heard of Ross loaned us an electronic hospital bed and a hydraulic lift. These two pieces of equipment have been invaluable in making daily care of Ross safer for both him and his caregivers. We were able to purchase a tilt table and track and a lift for putting Ross into the bathtub. Initially, we used the tilt table to acclimatize him to upright positions. When we first started, his feet and legs turned purple from weight bearing. By May, he was doing so well with weight bearing, that we were able to start using a standing frame, an activity that requires trunk stability, shifting his weight from one leg to the other, and correcting his posture.
In January, we put Ross on his stomach for the first time in nineteen months. At first, it was frightening for Ross and hard work for us who had to position him. We would time his tolerance for lying on his stomach, and then later we timed him holding his head up when lying prone. Holding his head up for even thirty seconds was so arduous that he cried. We discovered that if we put a timer where he could see it, he would hold his head up longer. There was jubilation in our house the first day that he held his head up off the bed for nine minutes. We now use the timer whenever Ross is working on endurance in a new activity. That competitive spirit learned in long hours of training for races is coming to his aid now that he is training for the hardest race of his life. In fact we have used bicycle-training terms a lot to encourage Ross when he is trying to do the impossible. We say, “Ross, this is a sprint. You know how hard sprints are.” Or, “Ross there is a bonus for this lap. Keep it up.” We are so proud of the hard work, perseverance, and patience that Ross has displayed over the last two years.
Ross is now using his right leg with maximum control: kicking, circling, and putting his leg over his left leg. In the last six weeks, he has started to regain gross motor skills with his right arm. He knocks plastic cones off his chair with his right arm as fast as we can put them up, and he even crosses over to the left side to knock the cones off with his right hand. He recently received Botox injections in his right arm and we expect to see the development of more control in his right hand. We also have to splint Ross's right arm and hand in order to counteract the brain's tendency to contract his muscles. We are beginning to see the development of volitional movement on the left side, and are looking forward to seeing more. The left side of his body is controlled by the right side of his brain, which sustained more injury.
In late spring, we requested a physical therapy mat, and a reader of the website bought one for Ross. Lisa, Ross's nurse, puts him on the floor three times a week for at least an hour. He spends time on his side and rolls to his back. He has also started to scoot when he is on his stomach. He manages to maneuver himself, recently moving in a 180-degree arc. When he had finished moving, his head was where his feet had been. If you are thinking that Ross's rehabilitation seems to be following the principles of child development, you are correct. Watching Ross regain function reminds us of how amazing the body is, and the orderliness of development.
Ross's latest advance is to turn on the radio by hitting a wobble switch. He can hit the switch easily with his right hand, but he is inspired to start moving his left hand more when we place the switch on his left. Someone who read our website request has also given Ross an Atari game system. We are still brainstorming how to modify the controls so that he can use it. With all of our interventions, it takes awhile to work out the details, but then we hit upon the way to present it so Ross can respond.
Ross has said a few things out loud. He also mouths phrases. Yesterday, when I put a stool in front of him for his right foot, he mouthed, “Thank you.” He definitely responds to questions by nodding his head yes or no. We are seeing responses that confirm that he does understand us and can respond. Clearly, cognitive work is the next frontier in Ross's restoration. This will require more specialists and lots of hard work for Ross and his caregivers.
We are so grateful for the members of TEAM ROSS: skillful, courageous, and life affirming physical, occupational, and speech therapists, a wonderfully positive and creative nurse and the saintly, capable gentleman who is Ross's main caregiver. We now have a team of wonderful doctors, all who are awesome professionals with a belief that Ross can continue to make significant progress. We also thank all of those who have shared their support and ideas with us. Your prayers, visits, letters, phone calls, and financial support are and have been an absolutely essential part of giving us the means and courage to carry on.
And Ross has more than done his part, responding far beyond anyone's expectations. His parents, therapists, doctors, as well as all of us are amazed! He has shown his first smile since being at home and now smiles and laughs often. He is completely off tube feeding and is eating an all-natural diet by mouth. With help he can now feed himself. He has learned to open his mouth in anticipation of food, to hold a spoon in his right hand and guide it to his mouth, and to chew and swallow. He loves different tastes and is intensely interested in food. He can freely move his right arm and leg (though inhibited by contractures) and reach across his midline to touch objects. Small but definite movements are coming into his left arm and leg. He holds up his head, turning to gaze at people, pets, and TV. His favorite “games” are kicking a ball and knocking over plastic cones with his right arm and leg. His trunk strength and control are excellent. His interpersonal attentiveness is striking and touching. He is clearly trying to mouth words and clearly said “Ow!” during a chiropractic adjustment. He seems so close to speaking. His seizures are less frequent and milder and his general health is sound. Somehow, while so restricted in his ability to move voluntarily, he has maintained good body tone and strength. All of these wonderful changes are “not in the books” as his therapists like to say, because Ross is far exceeding any “reasonable expectations.” His improvements are more frequent and in bigger steps, and this is happening more than two years after his accident when it's supposed to be “impossible.” He is on a roll!
If you have any further questions, feel free to contact:
The Fund Advisor, Dr. Paul Popper at 415-753-8666 or at [email protected]
Ross's dad, Rusty Dillon at 707-953-9369 or at [email protected]
Sincerely,
Paul Popper, Ph.D.
Dear Friends,
It is June 2006, four years since Ross was injured by a car that drove into the bike lane where he was riding. We are happy to report Ross is continuing to make wonderful progress in his rehabilitation. He is making steady gains in language, cognition, gross motor and fine motor skills.
Ross is talking to his family and caregivers throughout the day. He is stimulated by hunger, fatigue, love and confusion. He often breaks through with new words when he is frustrated. A recent example: Rusty (Ross's dad) gave Ross a sip of his coffee. When Ross gestured for more, his dad told him to ask for it. Finally, in frustration, Ross said, “I am not stupid. Give me more coffee.” Ross likes routines and he reminds his family as mealtime approaches. He will say, “Food; food now.” Or “Food in my mouth.” He is now telling them when he is tired. He still uses the less specific “Go home,” but he also says, “Go to my room” or “I am tired.” Many times a day, he tells someone in his family, “I love you.” He says, “Thank you” for small things like putting his shoes on, taking them off, or adjusting his pillow. He also loudly says, “Stop, that hurts!” when they wash his ears. Ross frequently says, “Who are you?” “I am home.” Or “Give me my name.” The other day when he asked for his name, the caregiver showed him the sign that says My Name is Ross Dillon. Ross read it and said, “When I first heard my name, it was so funny I just about choked.”
Ross's cognitive advances are seen in his speech and also in his coping strategies. He regularly uses his right foot to lift his left foot and recently has been opening his left fingers with his right hand. The man who was the first Emergency Medical Technician on the scene when Ross was hurt donated an old electric wheelchair. Rusty recently serviced it in order to see if Ross could use the controls. Ross immediately picked up on how to guide the chair using the toggle switch. He now travels around the driveway knocking down cones that have been set up for him and even steers between the cars to go back to the garage.
Ross's motor skills development is exciting. He is working on learning to walk in a gait trainer. He is moving his right foot, but still needs help moving the left one. He is able to move his left leg when it is not weight bearing. Another big advance in the last year is small motor skills. Using his right hand, Ross feeds himself with a spoon and can pick up a little gummy bear with his fingers and put it in his mouth. He picks up wooden blocks and puts them in a container. He picks up small things with tongs and releases them. He opens jars with lids to get to the treats inside. Ross really likes to work with form puzzles with knobs on the pieces. Recently, the caregiver lined up the pieces on the table, but turned them so Ross would have to work harder to put them in. Ross picked up the first puzzle piece, rotated it 180º by rotating his wrist, placed the piece in the hole, laughed and said, “I moved my hand.”
When we look back, we can see how Ross is working hard to regain function. When his parents brought him home three years ago, he could only move his eyes. Two years ago, he had started to eat, kick with his right foot and knock cones over with his right hand. One year ago, he was mouthing words and beginning to move the fingers on his right hand. His therapists have said they don't see a ceiling to his progress. At the end of 2004, we believed his next big achievement would be speech. Six months ago, we started to gear up for helping Ross relearn to walk. That continues to be a major focus, and hope.
Team Ross
Ross still requires around the clock care from his family and caregivers. He receives physical therapy four times a week, occupational therapy two hours a week, speech therapy once a week. He sees the chiropractic neurologist once a week, an acupuncturist once a week, the neurologist once every two months, and his neurosurgeon once a year. Ross's parents have also started consulting with a neuropsychologist as Ross gains more cognition and voice. His parents and caregivers work with him daily on exercises that his therapists prescribe. Ross is working therapeutically at least six hours a day.
Helping Others
Betsy, Ross's mother, continues to correspond with other parents, offering specific information about supplements and therapies that have helped Ross. As one doctor said, “These individual brain injury patients are teaching us what works.” Betsy has been in touch with parents and spouses in California, Oregon, Washington, Iowa, Hawaii and England. In fact, one of Ross's doctors has referred other families to the Dillons for information. In Hawaii, the mother of a four-year-old girl modified the way she used a biofeedback unit after Betsy told her about median nerve stimulation. The mother reported that her daughter made significant improvement in a short time. Another mother wants to start giving her son real food, instead of formula, through the feeding tube. Betsy explained to her how she had switched Ross from formula to real food through the feeding tube when Ross first came home. As Ross's mother says, “This is a hard and lonely road we are traveling, and talking to someone who has experience helps. We have been blessed by people reaching out to us.” People have written to the Dillons to say that reading of Ross's progress has given them hope for their loved ones. We believe the networking of families will profoundly benefit the future rehabilitation of brain-injured individuals.
Ross's family writes,
Ross continues to inspire us. His persistence, his strength, and his loving
gratitude are the building blocks with which his therapists work. When
Ross smiles, says, “Thank you” and returns to the task at hand, he is
confirming that he is ready for the long road to recovery. We are grateful
for the love and support we have received over the last four years.
We could not do it alone.
2005 FINANCIAL SUMMARY
You, Ross's extended team, were very generous in 2005. Total non-reimbursed expenses for the year were $123,306 (including $2,810 for a gait trainer), which is almost $5,000 less than total non-reimbursed expenses for 2004. The main difference was that Betsy did more of the round-the-clock caregiving when some of Ross's caregivers couldn't fulfill their scheduled commitments. Most of the 2005 rehabilitation expenses were covered by 237 separate donors, up from 161 in 2004. Total giving for the year was $110,921, up from $97,903 in 2004. Almost all contributions were in the $10 to $1,000 range, with a few contributions from $1,000 to $5,000 and one for $25,000. Ross also received $11,148 from SSI, almost the same as in 2004. The Dillon family expects that non-reimbursed expenses could increase by as much as $30,000 this year, roughly half of the increase being the cost of a motorized wheelchair (see below), the other half in increased costs for professional therapy, supplements, and caregivers.
GOING FORWARD
As Ross progresses, he needs more therapy and more assisted daily practice. An assistant is being trained to help Ross's caregivers, therapists and parents with exercises that require up to five people. For example, when Ross is freestanding, it takes five people to provide support and make sure that his feet, knees, hips and shoulders are all in good alignment for weight bearing.
Toward the end of this year, Ross will need a new motorized wheelchair (cost: $15-20,000). The chair previously donated has allowed his therapists to determine if a motorized chair is appropriate for him. Not only is it appropriate, but also they believe that the increased independence and process of learning to control the chair will actually aid Ross's cognitive rehabilitation. The family has also recently purchased a biofeedback unit at the recommendation of the neuropsychologist (cost: $3,750).
Last year the family requested parallel bars, a gait trainer and a spin cycle for Ross. The family purchased the gait trainer in December 2005. They received the donation of used parallel bars from a local physical therapy clinic and a brand new spin cycle from Greg Lemond. Ross pedals on the spin cycle for one hour six days a week. He uses the gait trainer during every physical therapy session, four to five times a week, and the parallel bars as appropriate.
I am asking you to continue your generous giving to assure that Ross can continue his miraculous journey, trailblazing the way for other Traumatic Brain Injury patients who presently languish in nursing homes, without hope. We hope that each donor will try to give as much this year as last, or possibly a little more. Without your help and the help of those like you, the Dillon Family would not have the resources Ross needs to continue his remarkable rehabilitation.
If you have any questions, please feel free to contact:
The Fund Advisor, Dr. Paul Popper at 415-753-8666 or at [email protected]
Ross's dad, Rusty Dillon at 707-953-9369 or at [email protected]" [email protected]
Ross's website www.rossdillon.com
Sincerely,
Paul Popper, Ph.D.
Fund Advisor
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December 2005
Dear Friends,
As 2005 draws to a close, it is time to update you on Ross's continuing and amazing progress, and provide you with a brief accounting of his expenses and the giving that is sustaining his care and rehabilitation. We are excited to give you the latest update from Ross's family and treatment team:
“The first half of this year was very difficult for Ross. In late January, his elbow was surgically repaired. The orthopedist cleaned debris from the joint. Because of the post-surgical pain and neurological spasms in his right arm, Ross was fitted for a cast. He then developed a large, deep, and painful pressure sore under the cast. He suffered intense pain for almost three months as his arm healed. We also discovered during this time that dental problems were causing Ross acute pain. Since he was unable to hold his mouth open for dental work, he had to be anesthetized for examination, x-rays, and the extraction of a molar that had cracked when he was originally injured. Treatment of other damaged teeth and cleaning required the coordination of the oral surgeon, our dentist, and the hygienist. The final work was completed in June. In addition, on May 5 Ross had a series of six grand mal seizures, each lasting eight to nine minutes. He was hospitalized for three days for observation and the treatment of low sodium levels (a byproduct of one of his medications).
After these trials, Ross's progress has really accelerated in the last five months. Ross started talking in July. This is momentous! Talking not only requires coordinating the flow of air across the vocal cords with word formation and the retrieval of words, but it also allows us to know what Ross is thinking and how he is processing information. His first words were “Stop,” “Please,” and “Everybody go home.” Now, all day long he tells us what he wants, and he also tells us what he thinks. Ben, one of his caregivers, recently asked him to lift his left arm. Ross's reply was, “I have no muscle now.” He also sometimes says, “I am a boy. Am I a man?” We believe this shows he is aware of his predicament, as he sometimes also says, “What am I supposed to do?” It is increasingly clear that Ross is cognitively present. In late July, the Occupational Therapist observed, “Ross's cognitive abilities have outpaced his motor skills.” This last week, Ross had two OT sessions where he demonstrated significant improvement in his ability to pick up and release objects with his right hand, to volitionally open the space between the thumb and index finger on his right hand, and to lift his left arm when asked. His drawings are becoming more complex and more circular and, if prompted, he can write “Ross.” He is able to sit in a kitchen chair with supervision for at least thirty minutes. His biggest challenges for the coming year are to regain the ability to retrieve more words, to regain fine motor skills, to stand with minimal support, to sit in a conventional chair without support, and to walk.
Ross's success is being sustained by your prayers and generosity. There has been a dramatic and positive change in the attitude of Ross's physiatrists and neurosurgeons. Whereas in the year following his injuries his treating doctors were giving him the gloomiest prognosis, they are now enthusiastically cheering Ross and his team on to further gains. In fact, the doctors who originally declared Ross's case hopeless are now referring traumatic brain injury patients and their families to the Dillons for guidance in setting up and operating subacute rehabilitation efforts in their own homes. To be able to do this for others has been a major goal for Ross's family and The Dillon Family Fund. All of us who love Ross and his family continue to be very grateful that their faith is being rewarded.
THE FINANCIAL SITUATION
While Ross is making wonderful progress, he has a long journey ahead of him, through which he will continue to be dependent upon the generosity of his support community. The basic financial situation remains close to the edge. After exhausting his private insurance, Ross's Medi-Cal and Medicare fall far short of the level of need. This year's expenditures will be around $117,000, with SSI providing $11,144. The expected increase in costs for 2005 did not occur, mostly because two of Ross's therapists weren't able to give Ross as much time as Ross could have used. As you can see from the budget below, the largest ongoing expenses continue to be for caregivers and therapists. Ross requires in home care and companionship 24/7. Betsy continues to take shifts, in addition to preparing and managing all of Ross's specialized nutrition, supervising the overall medical and rehabilitation plan, interfacing with various doctors and therapists, and providing transportation for Ross to out of home therapy and medical appointments. All of this intensive support providing non-stop protection and encouragement is necessary to call forth Ross's best effort. In fact, as Ross improves, his need and capacity for more specialized therapy increases. Every waking moment is a therapeutic moment.
Cost Analysis for Care of Ross Dillon - 2005
(Real costs January 1- November 30; estimated for December)
Income:
SDI and SSI $11,144.00
Expenses:
Accounting $3,500.00
Supplies $1,485.00
Clothing $498.00
Cleaning Service $1,800.00
Caregivers $70,450.00
Medical/Dental not covered $1,500.00
by Insurance
Food $5,500.00
Medication $598.00
Supplements $10,625.00
Therapy $18,959.00
Extra Utility Costs $2,109.00
Total $117,024.00
Net Un-reimbursed $105,880.00
Ross's ongoing, net non-reimbursed expenses will be $105,880 this year, not counting capital expenses. Generous people have given $49,239 over this past year, as of November 30th. So there is a shortfall of $56,641 that the family needs help with for 2005.
Looking to next year, it is very difficult to see where any trimming of this budget could occur. Furthermore, the family anticipates an increase in 2006 of roughly $22,000 for doctors' bills, medications, supplements, and speech, physical, and occupational therapy. This in addition to any capital expenditures for necessary equipment, as mentioned below. Ross's parents continue devoting full time efforts caring for him, in addition to full time rehab coordination and house holding for Betsy and a full time psychotherapy practice and part time ministry commitment for Rusty. A measure of their constancy is that they've had only two weekends away from home since Ross's accident in June, 2002. They are not backing away from this challenge and know that they are sustained by God's grace expressed through your love, prayers, and financial support.
Next on the horizon for Ross is relearning to walk. Toward this end, his rehabilitation specialists tell us he needs three capital items: a rehab grade stationary bike, parallel bars, and a walking support-gait trainer. Their cumulative cost will be approximately $8,000-$10,000, in addition to the regular operating expenses detailed above. If you or anybody you know has any of these items that you could donate, the Dillon family would be deeply appreciative.
If you have any questions, please feel free to contact:
The Fund Advisor, Dr. Paul Popper at 415-753-8666 or at [email protected]
Ross's dad, Rusty Dillon at 707-953-9369 or at [email protected]
Ross's Website, www.rossdillon.com
Sincerely,
Paul Popper, Ph.D.
Fund Advisor
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
August 2005
Dear Friends,
ROSS DILLON IS IN THE RACE OF HIS LIFE AND IS MAKING
WONDERFUL PROGRESS!
It is August 2005, three years after Ross suffered massive head injuries when he was hit by a car while biking, and two years since his parents brought him home from the hospital. His ability to attend has increased dramatically. A half year ago he started responding to questions by nodding or shaking his head or sometimes by responding to a YES or NO card presented to him. The frequency of these actions has increased progressively. As his mouth and throat became mobilized through the work with the speech pathologist and continuous stimulation at home (see “A day in Ross's life” for more details on the ongoing work being done with Ross), he started to show more facial expressiveness and to produce more and more sounds, eventually mouthing words. Beginning in August there has been an explosion in his ability to speak. Up to 50 times a day he communicates with words such as “please,” “stop,” “I love you,” “thank you,” and “go home.” His speech is appropriate to the situation, whether he is tired, hungry, or in pain. He can literally bellow out with a loud, deep, authoritative voice, “GIVE ME FOOD!” or he can delicately whisper, “I love you” to Jeremiah as his attendant enters his home to start working with him.
He is also showing that he is thinking on his own. One recent Monday, the speech therapist started to work with him on vowel sounds and Ross did not seem to be able to follow her instructions. On the following Sunday, Ross started laughing and said, “Did it.” Then he started saying the vowel sounds out loud over and over. He had been working on the vowel sounds by himself, all week! A few days ago Ross told Jeremiah, “I do not want to die.” The following day he told Jeremiah, “I want to live a long time.” He also frequently says, “I love people.” We believe this reveals that Ross recognizes that his life has changed profoundly, but still has a hopeful and loving spirit.
Let us remember where he started 3 years ago:
In the summer of 2002, two months after he was struck from behind by a car, Ross was constantly running a fever, in pain, and minimally responsive. He required feeding through a gastric tube for all of his nutrition, and his nourishment was a sugar based liquid formula. He was drifting in and out of a vegetative daze and had been given the gloomiest prognosis.
A year later, 2003, when he was brought home, Ross rarely looked past midline to his left, and could not move his limbs. Although he no longer needed a tracheotomy tube in his neck to be sure he could breathe, he couldn't accept anything in his mouth except a flavored swab during speech therapy.
The following summer, 2004, after doing daily physical therapy on the tilt table, in the standing frame, on the floor, etc., Ross was kicking a ball with his right foot, moving his right arm to hit plastic cones, and tracking his family and caregivers as they moved around the room. Moreover, after working with a speech therapist weekly and practicing daily with the help of attendants to mobilize his face, jaw and tongue, Ross had started to eat pureed foods by mouth.
ROSS'S TEAM
Ross receives 24 hours a day care from his family and dedicated attendants. He is also attended by a team of professionals, either in his home or their offices. He receives physical therapy four times a week and speech and occupational therapy once a week. He sees a chiropractic neurologist once a week. A medical neurologist (M.D.) who is also a trained acupuncturist sees Ross for acupuncture and a follow-up twice a month.
Dr. Deborah Swain, Speech-Language Pathologist, says:
“Ross has demonstrated spectacular progress thus far. Most important, he is communicating his wants and needs and responding accurately to questions. This would not be possible without the extensive and vigilant home program provided by his mother, father, sister, and aides. They consistently implement specific home exercises designed to supplement and enhance our therapy sessions. They see to it that Ross receives his therapy all day, every day. His progress would not be possible were it not for their commitment to his recovery.”
HELPING OTHERS
The Dillons are proving to be a valuable resource to other families facing similar circumstances to theirs. As the need surfaces, they respond.
For example, through her own research Ross's mother, Betsy, reasoned that magnesium supplementation might help reduce Ross's spasticity. After discussing it with Ross's doctor, they began giving Ross supplemental magnesium and it did seem to help him. When contacted by the mother of another traumatic brain injury patient, Betsy relayed this information and encouraged the mother to talk to her daughter's doctor about it. While her doctor had never heard of the nutritional supplement being used, the Dillons were able to furnish her with the references so that the mother and her doctor could pursue the question further. One goal of the Dillon family is to assemble a bibliography of books and articles on supplements and nutrition that could be helpful to traumatic brain injury patients, and post it on Ross's Website.
Betsy also received an e-mail from a father in Iowa who had found Ross's Website by Googling one of the supplements Ross receives. He wanted to know how much of the supplement Ross was taking. This led to a telephone discussion when the family decided to bring their son home instead of sending him to a nursing home. Betsy was able to answer his questions and make suggestions about equipment and the details of daily care for their son at home, and she is available to them as a support as they pursue this difficult but potentially rewarding path.
The Dillon family writes:
“The last three years have been a demonstration of how terrible tragedy and suffering can coexist with blessings and love. We were told three years ago that Ross had only a five percent chance of any improvement. Ross has not only defied the medical prognosis, but he gives hope to other families that people can heal after devastating brain injuries. We now see Ross's fun loving spirit and humor. As always, his indomitable spirit shines as he works to regain volitional control of his body and mind. Thank you all for your love and support. We could not do it without you.”
GOING FORWARD
While Ross is making wonderful progress, he has a long journey ahead of him through which he will be dependent upon the continued generosity of his support community. As he improves, he requires more and more specialized therapy in order to achieve independence.
You, Ross's extended team, have been extraordinarily generous.
During 2004, the majority of Ross's rehabilitation expenses were supported by 161 separate donors. Their contributions ranged from $20 to $1,500 per donor, with two donors giving $10,000 or more each. The total non-reimbursed expenses for Ross in 2004 were $124,087 plus roughly $4,000 in one-time capital costs. Ross received $11,148 from SSI, and the Dillons received $97,903 in donations. The Dillon family made up the difference. They anticipate that non-reimbursed expenses will increase this year by approximately $20,000, due to increased use of rehab professionals and increased cost of supplements.
Next on the horizon for Ross in his journey back is relearning to walk. Toward this end, his rehabilitation specialists tell us he needs three capital items:
Parallel bars $2,500
Walking support - gait trainer $3,500
Stationary bike - rehab grade $3,000
If you or anybody you know have any of these items that you could donate, or if you would like to make an earmarked contribution, the Dillon family would be deeply appreciative.
I am asking you to continue your generous giving to assure that Ross can continue his miraculous journey, trailblazing the way for other Traumatic Brain Injury patients who presently languish in nursing homes, without hope. We are hoping that each donor will try to give as much this year as last, (or, if possible, even a little more.) If that happens, and if a few more people are moved to contribute, Ross will have the resources he needs to make as much progress as possible.
If you have any questions, please feel free to contact:
The Fund Advisor, Dr. Paul Popper at 415-753-8666 or at [email protected]
Ross's dad, Rusty Dillon at 707-953-9369 or at [email protected]
Ross's Website, www.rossdillon.com
Sincerely,
Paul Popper, Ph.D.
Fund Advisor
December 12, 2004
Dear Friends,
We wanted to write you again to give you a brief accounting of Ross Dillon's 2004 expenses and the giving that has allowed his family to continue his care and rehabilitation. As you know, Ross suffered devastating brain injuries when an inattentive driver who drove into the bike lane where he was riding struck him from behind. You may recall that the Dillon family has asked me, Paul Popper, to periodically report to you on Ross's condition and progress. But first here's a fresh update from Ross's family:
Ross now sticks out his tongue on command. When we saw the neurologist on Wednesday, he asked Ross to stick out his tongue and he did. For the last two and a half years, doctors and speech therapists have asked him to do that and he couldn't. The neurologist also asked him to raise his right hand and Ross did it without hesitation. He also shrugged his right shoulder when we asked him if he wanted to stop on the way home from the doctor's. He is standing taller in the standing frame and sitting taller in his wheel chair. Rusty saw him stretch while sitting in the wheel chair. Ross moved his arms out and stretched his spine, something we have not seen before. Yesterday, the nurse observed him moving his head side to side as he was listening to music. He now can roll from his back to his side when on the floor without any assistance. He is biting and chewing. He continues to enjoy rice cakes with soft cheese, peanut butter or butter. He is also chewing his food. He has been eating meat loaf, green beans (cut into pieces about an inch long), and salad. For breakfast last week he ate an entire breakfast burrito. We just cut it and gave it to him. He is drinking more unthickened liquids at a time. He is nearing the point when his feeding tube can safely be removed. His communication is more and more reliable. He is using head movements (nods and shakes), touching icon cards, or if he is just too tired, he looks at the answer. Bryan, one of our caregivers, lets Ross hold the telephone shower when he gives him a bath. Last night, Ross was squirting water in his mouth and swallowing it. We now ask him if he wants his right arm splint on. The elbow sometimes hurts and we think he will have to have surgery in order to fully extend and use his right arm. He communicates yes or no about whether he wants to wear it. Ross woke up laughing yesterday, and he laughed a long time. His whole face was more balanced, relaxed and his mouth opened wide giving deep belly chuckles. All of his emotions are more pronounced and we are seeing more of the Ross we know.
The big news is that Ross appears to be on the verge of talking. He spoke a complete sentence a couple of months ago, he occasionally says a word, and he frequently mouths phrases like "I love you" or "Help me". His therapists and his doctors are excited about his progress. He is standing with minimal support in the standing frame and his physical therapists think he is ready to start relearning to walk with special sling support. He is also playing games with his family and caregivers. For example, he plays a game of kicking the ball when in a circle with three other people; he does side kicks as well as toe kicks. Another game he enjoys is hitting a balloon back and forth with another person at close range. Ross has clearly made another growth step in thinking, planning, and follow through with games.
All this is great news and represents an accelerating curve of improvement for Ross. All of us who love Ross and his family are very grateful that their faith is being rewarded in such a tangible way. Indeed, it is a lesson in faith for all of us.
While we are thankful, we also know that this home care and rehabilitation effort is very expensive. A further complicating factor is that Ross's private medical insurance has expired, leaving him with a combination of Medi-Cal and Medicare that falls far short of the previous level of reimbursement. In the coming year, Ross's family will have to pay for all therapy without any private insurance support. As you will see in the analysis detailed below, the largest ongoing expense is for caregivers and therapists. Ross requires in-home care and companionship 24/7. In order to reduce costs, Betsy takes two night shifts (12 hours each), one day (12 hours), and two half days (4 hours each). This is in addition to preparing and managing all of Ross's specialized nutrition, supervising the overall medical and rehabilitation plan, interfacing with various doctors and therapists, and providing transportation for Ross to out of home therapy and medical appointments (at least 3 trips weekly). All of this intensive support is to provide non-stop protection and encouragement in order to provide the environment that calls forth Ross's best effort given his current state of healing. This all could be characterized as raising and caring for a 6'1" infant whose path of development is random and non-linear, requiring constant experimentation and adjustment. Ross' survival and improvement have surpassed the limits of current medical understanding and prognosis.
None of the ongoing expenses detailed below are covered by any insurance. We have not included any capital expenses in the following analysis for two reasons. First, they tend to be one-time expenses and thus not predictive of future, ongoing costs; and second, some of these items, like for example the Hoyer lift and hospital bed, have been donated by generous and loving people who have learned of Ross' needs. The two capital expenses this year were the pedaling machine that Ross has been using since early in 2004 and the used standing frame that his family was able to purchase. Together these two pieces of equipment cost nearly $4000.
Cost Analysis for Care of Ross Dillon - 2004
(Real costs January 1- November 30; estimated for December)
Income:
SDI and SSI 11,144.00
Expenses:
Accounting, Paper Processing,
Managing Special Needs Trusts 2256.00
Bedding 185.00
Clothing 498.00
Hygiene Supplies 690.00
Equipment, Non-Capital Replacements 500.00
Cleaning Services 1728.00
24/7 Care
Nursing 10,968.00
In Home Care Aides 64,814.00
Insurance Premiums (For private insurance that has 4792.00
now run out)
Medical not covered by Insurance:
Doctors, Dentists, Special treatments 1437.00
Food 5646.00
Medication 1420.00
Supplements 5825.00
Therapy
Speech Therapy 3284.00
Physical Therapy 6605.00
Occupational Therapy 1804.00
Massage 225.00
Extra Utility costs 2109.00
___________________________________________________________
$114,786.00
Net Un-Reimbursed Yearly Expense, 2004
$103,642.00
As you can see, Ross' ongoing, non-reimbursed expenses were $103,642 this year, not counting capital expenses. Generous people have given $24,690 over the past year, as of December 1st. So there is obviously a shortfall of $78,952 that the family needs help with for 2004. Looking to next year, it is very difficult to see where any trimming of this bare bones budget could occur. Furthermore, the family anticipates an increase next year of $11,500 cost in doctors' bills, medications, supplements, and speech, physical, and occupational therapy, due to the fact that Ross's private medical insurance has expired. This does not include the costs for arm surgery and rehabilitation that cannot be estimated at this time. Ross's parents are devoting full time efforts caring for him, in addition to full time rehab coordination and house holding for Betsy and a full time psychotherapy practice for Rusty. A measure of their constancy is that they've had only one weekend away from home since Ross's injury in June 2002. They are not backing away from this amazing and harrowing journey with Ross and know that they are sustained by God's grace expressed through your love, prayers and financial support.
Sincerely,
Paul Popper, Ph.D.
Fund Advisor
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October 25, 2004
Dear Friends,
Ross has been home for a year and he just had his 28th birthday. As you know, Ross suffered devastating brain injuries on June 2, 2002 when he was hit by a car that drove into the bike lane where he was riding. Ross is making amazing progress and confounding those who said there was no hope for recovery. In fact, some of Ross's therapists have said his case should be documented for the medical profession.
How is Ross doing? In a word: AMAZING!
Here's what his two lead therapists have to say:
“It is the environment that challenges the brain to heal and restore
function." I learned this in PT school 7 years ago, however it is because
of Ross's remarkable progress that I now truly understand the importance of a loving supportive environment, a committed team of professionals and caregivers, and an environment that is structured to help the brain heal. I have worked in hospital brain injury rehabilitation clinics and have felt the frustration of poor outcomes because the environment was only therapeutic for a few hours a week. The difference is clear and the results of Ross's progress demonstrate that the strategies and care giving that Ross is receiving because of the generous donations are not only helping Ross to recover but also will contribute to changing the way professionals treat brain injuries in the future.
Jeremy Nelson, Physical Therapist
The recovery from traumatic brain injury is a process that is uncertain for both the patient and their families as well as the professional involved in the care and rehabilitation of each patient. I have been a speech-language pathologist for more than 20 years. Traumatic brain injury rehabilitation requires knowledge, expertise, creativity, and risk taking.
These skills have been used in my treatment of Ross. Ross sustained extensive injury to his brain as a result of his accident. This damage affected not only his physical/motor and communication skills but also his ability to eat and swallow. When Ross first came to our center he was being fed with a feeding tube and was unable to move his tongue and lips. His improvement thus far has been nothing short of remarkable. He no longer requires a feeding tube for his food intake, is able to move his lips and tongue, and is able to chew food. I have never seen anything close to this during my years in practice. His improvements are steady and impressive. The care provided by all of the therapists, his parents, friends, and aides have contributed to his remarkable progress. The generous donations of funding and time have made a huge contribution to his ongoing progress. We know that this is only the beginning!
Dr. Deborah Swain, Speech Pathologist
In other words, when his parents made the terrifying and necessary decision to bring Ross home instead of placing him in custodial nursing home care, they found themselves, with God's grace, able to construct and sustain a home-based, sub-acute care and rehabilitation situation for Ross that has optimized his recovery results and potential. His therapists, and they are some of the best, are telling us that no rehabilitation institution could provide a better healing environment and results than what is being provided for Ross at home.
Ross's “steady and impressive” improvement is beyond the medical prognosis received early in this journey. Now as a result of God's grace expressed though your love and support to Ross, his family and care team, Ross is getting better and other families are benefiting from what the Dillons are learning.
Ross's family says,
The day-to-day changes we see are remarkable. When Ross came home in June of last year, his doctors gave him a very poor prognosis for any improvement and regarded us as a grief-stricken family unable to “let go” and face the tragedy that had befallen us. And indeed Ross didn't look good. He spiked fevers every day or so and had regular bladder infections. He required feeding into a gastric tube for all of his nutrition and fluids and his nourishment was sugar-based liquid formula. We were warned not to put anything into his mouth for fear he would surely aspirate and get a fatal pneumonia. He was drifting in and out of a vegetative daze and, while apparently awake, he was not very responsive and certainly incapable of purposive action. His right side was contracted with some minimal movement while his left side was “toned out” in extension. When supported in a sitting position, he couldn't hold up his head or exert any trunk control. His digestive system was constantly upset and his only sounds were cries of pain. He was awake most of the night and dozing through therapy during the day. We were overwhelmed for weeks; but we believed that there was a fundamental rightness to having him home and giving Ross our best effort. We had no idea what lay ahead, but we believed home was far better than a nursing home.
Then with God's grace the blessings began to flow for Ross, and not a moment too soon because taking care of Ross is very daunting and exhausting. We had to turn Ross every two hours and move his limbs that were stiff with contractures and spastic tone. At that point he only moved his eyes, and rarely moved them beyond midline. Dear people who had heard of Ross loaned us an electronic hospital bed and a hydraulic lift. These two pieces of equipment have been invaluable in making daily care of Ross safer for both him and his caregivers. We were able to purchase a tilt table and track and a lift for putting Ross into the bathtub. Initially, we used the tilt table to acclimatize him to upright positions. When we first started, his feet and legs turned purple from weight bearing. By May, he was doing so well with weight bearing, that we were able to start using a standing frame, an activity that requires trunk stability, shifting his weight from one leg to the other, and correcting his posture.
In January, we put Ross on his stomach for the first time in nineteen months. At first, it was frightening for Ross and hard work for us who had to position him. We would time his tolerance for lying on his stomach, and then later we timed him holding his head up when lying prone. Holding his head up for even thirty seconds was so arduous that he cried. We discovered that if we put a timer where he could see it, he would hold his head up longer. There was jubilation in our house the first day that he held his head up off the bed for nine minutes. We now use the timer whenever Ross is working on endurance in a new activity. That competitive spirit learned in long hours of training for races is coming to his aid now that he is training for the hardest race of his life. In fact we have used bicycle-training terms a lot to encourage Ross when he is trying to do the impossible. We say, “Ross, this is a sprint. You know how hard sprints are.” Or, “Ross there is a bonus for this lap. Keep it up.” We are so proud of the hard work, perseverance, and patience that Ross has displayed over the last two years.
Ross is now using his right leg with maximum control: kicking, circling, and putting his leg over his left leg. In the last six weeks, he has started to regain gross motor skills with his right arm. He knocks plastic cones off his chair with his right arm as fast as we can put them up, and he even crosses over to the left side to knock the cones off with his right hand. He recently received Botox injections in his right arm and we expect to see the development of more control in his right hand. We also have to splint Ross's right arm and hand in order to counteract the brain's tendency to contract his muscles. We are beginning to see the development of volitional movement on the left side, and are looking forward to seeing more. The left side of his body is controlled by the right side of his brain, which sustained more injury.
In late spring, we requested a physical therapy mat, and a reader of the website bought one for Ross. Lisa, Ross's nurse, puts him on the floor three times a week for at least an hour. He spends time on his side and rolls to his back. He has also started to scoot when he is on his stomach. He manages to maneuver himself, recently moving in a 180-degree arc. When he had finished moving, his head was where his feet had been. If you are thinking that Ross's rehabilitation seems to be following the principles of child development, you are correct. Watching Ross regain function reminds us of how amazing the body is, and the orderliness of development.
Ross's latest advance is to turn on the radio by hitting a wobble switch. He can hit the switch easily with his right hand, but he is inspired to start moving his left hand more when we place the switch on his left. Someone who read our website request has also given Ross an Atari game system. We are still brainstorming how to modify the controls so that he can use it. With all of our interventions, it takes awhile to work out the details, but then we hit upon the way to present it so Ross can respond.
Ross has said a few things out loud. He also mouths phrases. Yesterday, when I put a stool in front of him for his right foot, he mouthed, “Thank you.” He definitely responds to questions by nodding his head yes or no. We are seeing responses that confirm that he does understand us and can respond. Clearly, cognitive work is the next frontier in Ross's restoration. This will require more specialists and lots of hard work for Ross and his caregivers.
We are so grateful for the members of TEAM ROSS: skillful, courageous, and life affirming physical, occupational, and speech therapists, a wonderfully positive and creative nurse and the saintly, capable gentleman who is Ross's main caregiver. We now have a team of wonderful doctors, all who are awesome professionals with a belief that Ross can continue to make significant progress. We also thank all of those who have shared their support and ideas with us. Your prayers, visits, letters, phone calls, and financial support are and have been an absolutely essential part of giving us the means and courage to carry on.
And Ross has more than done his part, responding far beyond anyone's expectations. His parents, therapists, doctors, as well as all of us are amazed! He has shown his first smile since being at home and now smiles and laughs often. He is completely off tube feeding and is eating an all-natural diet by mouth. With help he can now feed himself. He has learned to open his mouth in anticipation of food, to hold a spoon in his right hand and guide it to his mouth, and to chew and swallow. He loves different tastes and is intensely interested in food. He can freely move his right arm and leg (though inhibited by contractures) and reach across his midline to touch objects. Small but definite movements are coming into his left arm and leg. He holds up his head, turning to gaze at people, pets, and TV. His favorite “games” are kicking a ball and knocking over plastic cones with his right arm and leg. His trunk strength and control are excellent. His interpersonal attentiveness is striking and touching. He is clearly trying to mouth words and clearly said “Ow!” during a chiropractic adjustment. He seems so close to speaking. His seizures are less frequent and milder and his general health is sound. Somehow, while so restricted in his ability to move voluntarily, he has maintained good body tone and strength. All of these wonderful changes are “not in the books” as his therapists like to say, because Ross is far exceeding any “reasonable expectations.” His improvements are more frequent and in bigger steps, and this is happening more than two years after his accident when it's supposed to be “impossible.” He is on a roll!
If you have any further questions, feel free to contact:
The Fund Advisor, Dr. Paul Popper at 415-753-8666 or at [email protected]
Ross's dad, Rusty Dillon at 707-953-9369 or at [email protected]
Sincerely,
Paul Popper, Ph.D.