My apologies to those of you who view this site in Chrome. My web program, does not interact well w/that browser.
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PO Box 1509
Glen Ellen, CA 95442
Charles "Rusty" Dillon
On June 3, 2002, while riding his bicycle in a wide bike lane along an unobstructed stretch of rural road, 25 year old Ross Dillon was struck from behind by an innattentive driver. In that one, pivotal moment, Ross's life, and the lives of his family and friends, were changed forever. His care has been chronicled in an online diary, beginning at www.rossdillon.com. His is a story of amazing courage and resiliance, and the very stubborn love of a family unwilling to give up on his journey toward recovery.
Ross's mom has done extensives study on traumatic brain injury, and is often asked for her resource material. A bibliography has been added to the site. The link is above.
July 8, 2014
This year’s anniversary of Ross’s injury was hard for us. We are grateful that Ross is continuing to make constant progress; his ability to communicate and interact with us is a miracle. I try to emphasize the positive things in our lives, and to be thankful. This year was different; the grief and sadness were stronger and engulfed us for a few days. Thankfully, Ross’s sunny disposition is good medicine for all of us, and we are looking forward to see what Ross will show us.
Ross continues to make improvements in all areas. He is talking more, and his articulation is better, especially in the morning after a good night’s sleep. Dr. C, his new doctor, is methodically attending to Ross’s overall health and the seizure issue. The doctor ordered a blood test to check some important hormone levels. Ross is now taking medicine for this, and he seems to be more alert, less puffy, and more energetic. I have been giving the doctor detailed records of Ross’s vital signs, sleep quality, and seizure activity. This analysis helps us to understand Ross’s seizures. One interesting fact, mentioned by the doctor, and confirmed by our data, is that there is a correlation between low blood pressure and seizures. This is not considered to be a causal relationship, although we hope it will give us clues. For example, Ross’s partial seizure activity is much less, and his blood pressure somewhat higher since he has been taking hydrocortisone. Concurrently, partial seizures have decreased to about seven a month, rather than two a day. The two large seizures in the last two months were very mild.
Ross is sleeping up to seven hours at night which helps his disposition and also calms his central nervous system. Ross’s mobility has markedly improved. He cannot yet walk alone, but he does stand up from sitting at his bed without any help, walk from his room (with Jeremiah holding his hands from the front) across the hall, down the ramp, and to the therapy room. He also walks from his room to the family room, again with Jeremiah holding his hands. He continues to propel himself around the house is his wheel chair, using his feet. He is very good at guiding it. I tried to maneuver the chair while seated in it, which is not easy!
Ross is also showing more independent thinking and decision making. Recently, at lunch time, he decided it was time to eat and took himself to the table. When he saw that his niece was sitting in his place, Ross positioned himself at the end of the table and waited for his lunch.
Ross’s speech is also advancing. One morning, he was lying in bed and seemed uncomfortable. I asked if he wanted to have his pillow moved, and he nodded “Yes”. After removing his pillow, I then asked if he would like a small pillow. Again, he nodded “Yes.” After I put the new pillow in place, Ross distinctly said, “Thank you.” Another time, again in bed for the night, I thought he would be more comfortable if we lowered the bed’s head section. I asked him about it, and then started to lower the bed. Ross said, “Don’t put down.” He then gestured upward with his hand. This morning he was watching the Tour de France on TV. At one point, Ross yelled at the television, “Turn right.
The most exciting “new thing” is Ross’s ability to stand on his own. Jeremiah has Ross sit on the edge of his bed with the bed elevated enough so that Ross’s feet touch the floor. Using raspberries as an incentive for Ross to move, Jeremiah gets Ross to stand. After Ross is standing, Jeremiah holds a raspberry just out of Ross’s reach in order to entice Ross to lean forward, sideways, down or up in order to reach the raspberry and eat it.
Ross has learned to stand without pushing down or pulling himself up as he does with the standing pole. After a few minutes, Ross sits down, all by himself.
For those of you who are interested in nutrition and brain health, I have discovered a web site. Of special interest is the research report about Omega 3s (High quality fish oil) for brain health. The web address is www.brainhealtheducation.org .
Thank you for your thoughts and prayers for Ross. We could not do this by ourselves.
Blessings for all of you,
Onward and upward!
June 3, 2002 A quick note from Kate (web person)
Betsy has had a long day and is getting a late dinner prepared for Ross--she said she'll send an update when she can. I couldn't let this date go by without a brief thank you to those of you who have followed Ross's story, have kept him and his family in your prayers and healing thoughts, and have, in so many ways, shared this long journey with Ross and his family. It was twelve years ago today when an inattentive driver hit him from behind while Ross was on a training ride on his bike. He was doing all the right things--riding in a wide, well-marked bicycle lane, traveling with the flow of traffic, wearing his helmet.
It wasn't enough to prevent the terrible injuries that have changed his life and the lives of his loved ones forever. His achievments have been won in a more difficult battle than anyone should have to face, but he continues to gain at least a baby step forward against the many that have knocked him back over the years. Thank you for keeping him in your hearts, and as Betsy always says, onward and upward.
April 14, 2014 An update from Betsy:
The first months of the year were challenging because of reports, tax preparation, and extra appointments for Ross. It was harder because of the annual siege of unwelcome beautiful trees-abundant yellow flowering acacia trees. They are everywhere and spring up like weeds, producers of obnoxious pollen that affects us like a terrible cold. These weeks were a reminder that when the body is dealing with inflammation (inflammation is now thought to be part of most physical ailments), it is hard to think, difficult to sleep, and certainly hard to be cheerful. For Ross, because of traumatic brain injuries, it can make him more susceptible to seizures.
Now that our annual battle with the acacias has finished, Ross is feeling better. He had a great visit with his endocrinologist. Ross was calm and cheerful, and gave the doctor a “knuckle tap.” His doctor was very impressed with Ross’s progress.
The home front has also been positive. Ross’s ability to pull himself to standing using the transfer pole is even better. He is also scooting down the therapy bench from one end to the other by just lifting his bottom, moving a few inches at a time. This is very new. A few weeks ago when Ross was standing in the power chair, Jeremiah noticed that Ross was alternately going up on the toes of one foot and then on the other foot.
Jeremiah came up with a way for Ross to do sit ups. Ross sits in the power chair and Jeremiah tilts the back until it is only about a 20% angle. Ross folds his arms across his chest and does twenty sit ups, takes a short rest ,and then does twenty more. He does these forty sit ups twice a day, every other day. Ross is thrilled to be working out. His joy in exercise is something that trauma did not take away.
It is also fun to watch him peddle, usually with a cycling video. He does not want us to watch him and he stops if knows we are watching. Jeremiah stands behind him as Ross peddles. Ross peddles for about thirty minutes; he goes fast for a while, then slows down, then starts going hard again. He also sometimes rides with his arms crossed across his chest. Before he was injured, he rode as much as possible, and we are so glad that he is able to peddle now. This morning I heard Ross yelling in his room. When I checked, he was engrossed in watching a race in Brussels and absorbed with the action.
One big rehabilitation break through has been ongoing for a few months-he is beginning to use his left side more. He is lifting his left foot some, instead of dragging it while walking. He uses his left hand to work the left brake on his chair, and uses his left hand to stabilize a book when he is turning pages with his right hand. Because of the injuries to the right frontal lobe, he has had Left Side Neglect, which means ignoring the left side. When we went to see the endocrinologist, a one hour trip each way, I noticed that as his left arm would slide and be hanging down, he would remember it, and pull it up and put it in his lap.
When I first noticed how much he was using his left, I started asking him to raise both arms, and now he does it frequently. I think he is proud to be doing it.
We are blessed that he is doing so well. Thank you for your support and prayers.
We couldn’t do this without your help. Onward and upward.
February 8, 2014 An update from Betsy:
I promised news of the progress Ross has been making cognitively and in motor function. My intent was to categorize the list I have been making over the last few months. However, life isn’t that organized. As I have thought about Ross’s progress, I look back at the grim prognosis in the first years post injury. In a numbed state, I accepted what I saw, but vowed , with God’s help, to do everything possible. Now, I am able to see Ross, not as a man with many deficits, but as a man who is gaining daily.
I recently joined an online group of caregivers, many who are at the beginning of their journey. My heart breaks for them, and I remember how it is easy to be overwhelmed when everyone around you says “No.” We often have to see positive improvements and watch our loved one build on each forward step in order to start feeling more positive. I thank all of you who have prayed for Ross, shared other TBI stories with us, and are our support community. We truly appreciate your support.
My narrative of Ross’s progress has been aided by a new doctor. For the last eleven years, Ross has never consistently slept seven or more hours through the night. Also, for the last two years he has had at least one partial seizure a day, in spite of the seizure medications. Well, we were referred to Dr. C. He looked at all the supplements we give Ross. We talked about the seizures and he ordered a comprehensive blood test. We left with some suggestions, an herbal supplement at bed time, and an herbal tea that is calming to drink three times a day.
That night Ross took the supplement and ate some avocado (my daughter says that pediatricians advise a little avocado before bed time). Obviously, I don’t know which or both get the credit, but Ross has been sleeping through the night since we started the routine. Instead of a partial seizure a day, Ross has had only five small seizures in four weeks.
Again, I am grateful for the wonderful doctors we have been able to work with.
In mid-November, Jeremiah, Ross and I were sitting in the living room. Ross was flexing the fingers on his right hand; at one point, Ross said, “I have five fingers.” Then Jeremiah remarked that Ross individually licked each of his fingers. Ross was sitting in the recliner, and became very angry until we calmed him down, and he then smiled. I asked him if he wanted to work privately, and didn’t want to talk it about it. I asked him, because about ten days before, I commented that he was holding his left hand with the right hand and he became angry. I have recounted that the first time he spoke in 2005, he said, “I love my parents and they love me. I want to live; I don’t want to die.” I have thought that he had been practicing those words, until he had mastered them. It would be like him to practice a skill, and then surprise us. Maybe in the future he can tell us.
Another day, in the shower, he leaned forward until his chest touched his knees, then clasped his hands under his legs, and rocked for ten minutes. He also now, when lying flat in bed, rolls over on his right side, grabs the rail with his left hand, and lies there for about ten minutes. These are all new activities.
We have a child’s piano book with keyboard matched by numbers and colors to the songs. Ross had been playing random notes. One day, his playing sounded melodic. I went to watch him, and discovered he had learned on his own to play the keys by the numbers. Quite an accomplishment.
Another day, when he was hungry, he rolled his wheel chair to the counter and took the raspberry box to the table, where he took off the lid, not an easy task, and helped himself to raspberries.
His speech is clearer and a bit more specific. One night, Jeremiah was feeding Ross sorbet with a spoon. Jeremiah playfully just a tad on the spoon. Ross refused it and said, “bigger”, asking for a bigger serving. Another day, when Ross was standing in his special chair, he said to Jeremiah, “Lower me.” One day, when he was standing, we asked him to dance. His response was, “My left leg is not moving. It won’t work.”
I am posting a picture of a Lego structure that Ross built completely by himself. Pretty amazing.
Onward and Upward!
January 11, 2014 First of two parts--a note from Betsy:
It is a shock to see I haven’t written since November. We have been busy as usual; Thanksgiving and Christmas seemed pressed together. On Thanksgiving we had a total of sixteen people around our dinner table. Ross was a delight at dinner; he ate quietly without the usual Thanksgiving eating mania. Jeremiah’s wife was with us; she and Jeremiah were on either side of Ross, and I sat across the table. Jeremiah helped Ross eat his dinner by cutting his food and helping Ross to eat with his fork. Ross ate a couple of helpings of turkey, stuffing, vegetables and pumpkin pie. When Ross finished, Jeremiah filled his own plate and sat down across the table. I was amazed that Ross calmly interacted with us, smiled at all of us, and not once did he ask more for more food or for Jeremiah’s food. This is a huge step for Ross and I believe it clearly shows an advance in his social skills. I don’t know if he made a conscious decision to be polite, or if this was part of his increasing cognition and calmness, but I welcome it.
Christmas was not as rosy. During the early days of December, Rusty had a bad cold. We were all congested, but were not very sick. Then the flu came calling. Ross was very congested and had a fever, probably the trigger for his seizure around 5 AM on the twentieth of December.
Thankfully, it lasted only two minutes; interestingly, there was movement on both sides of his body, which is good. He got better over the next five days, but he obviously was not feeling well. We brought him to the dinner table on Christmas evening, but took him back to his room within ten minutes, and fed him in bed. He didn’t yell or become angry, he was just extremely tired. Even opening his Christmas presents was lackluster for him. I thought being sick would cause him to lose some of his recent gains, but it is a couple of weeks later and he is sailing ahead through the rough waters of recovery.
More to come soon. Thank you for your love and support. Onward and upward!
November 9, 2013 An update from Betsy:
Ross is entering another challenging phase. He has started working with the speech pathologist on developing clearer speech and communication. We have had two meetings with her (she is also the professional who helped him learn to eat again) in the last two weeks. She has given us mouth exercises for Ross, and has suggested we buy an I Pad type device for him. We will make that purchase as soon as we know which apps we will be using.
On Monday, he drank both water and thick juice through a straw and did a great job. He also is enjoying mimicking facial gestures with us.
We have seen some partial seizures, and a few days ago I was very concerned that his pulse rate was repeatedly quickly going up to 103 and down to 70 and then back up. Thankfully, he calmed down. The next day he was feeling better and he wanted to stay in the family room all day. Usually he goes back to his room and rests in bed after exercise, but he brought himself back to the family room, walking himself in his chair. The next day was the same until midafternoon when he agreed to take a nap. One exciting thing that day was that he started looking at the chart pages on which are listed all his medicine and supplements, his vital signs, his sleep times and his fluid intake for every day. He read through it and seemed pleased.
Ross’s second appointment with the speech pathologist went very well. She was very pleased with his ability to lick Nutella (an icing like substance made with hazelnuts and cocoa) from his lips and from behind his front teeth. We still have a lot of work to do, and it is obviously tiring for Ross to be trying to make his tongue and mouth do specific things. It seems also that he is more pensive since we started this new program, and I think that it may be triggering some memories. Jeremiah was reminding me that Ross was speaking more clearly at one point. We can’t remember when that was so I will go through all of our records and see if I can determine when. I am curious if it was before the fourth seizure medication was added.
Thank you for your support and love.
Onward and upward!
October 17, 2013 A quick note and a photo from Betsy of Ross walking with Jeremiah's help:
As usual, we have been very busy. Also, summer allergies/colds have sapped our energy. As I often say, the spring/summer allergies are the price we pay for living in this beautiful area.
Anyway, Ross is doing very well. He continues to enjoy using the addition and subtraction flash cards. One day, I watched him work out 8 + 6. He mumbled a little, as if he were adding, and then said 14. He is also using new words. The other day, Letha (the Occupational Therapist) was working with him writing on the Etch-A-Sketch. Ross said “I am the king, I am a boy, a son.” Letha asked him to write son, and he wrote “son”. That was a first. I had not heard him say son or seen him write the word. The next day, he was looking at his place mat which has a picture of a Paris street scene. He put his hand on the buildings and said “Building”. A few day s later I heard him saying “Petaluma town” over and over. (We lived near Petaluma until Ross was eighteen.) Jeremiah translated what Ross was saying, “Petaluma town, Petaluma town is not a country; it is buildings.”
Since Ross is now doing so much better, we are going to have a meeting with the speech pathologist in a few weeks, and hopefully start speech therapy. We think Ross is ready.
One note about our constant interference, seizures. Ross had a grand mal a couple of weeks ago that was very mild. Interestingly, he turned his head to the left, not the right as usual. During the seizure his left hand moved, as well as both feet. This was so different (left dominant rather than right), we think it was part of healing of his brain. Afterward, he was fine, and particularly verbal.
We have noticed that he is having small partial seizures the day after he has exploded, yelling and kicking. Usually these events are preceded by fear or frustration. Some professionals believe that these episodes are also seizures. Also, some neuropsychologists believe that this kind of seizures makes pathways for more seizures. It is certainly complicated, but we are thinking that some seizures are part of healing, and some can be more negative. This means we have to pay careful attention and not overstress him. Ross is teaching us as we go along.
Thank you for your support. Onward and upward!
September 4, 2013 Just received a new update and photos from Betsy, and the reminder that Ross will be 37 on September 7:
Ross continues to make great progress. A few weeks ago, when he was feeling rested and independent, he insisted on
putting the fire truck jig saw puzzle together by himself. He wouldn’t let Jeremiah remove any of the puzzle pieces from the box or make suggestions about the placement of the pieces. Nice!
Ross is also continuing to use his left side more. He regularly remembers to lift his left hand up to the arm rest of his chair or to the table. That side used to be totally neglected. Recently, during an exercise session, Jeremiah lifted his own arms above his head. Ross followed Jeremiah’s lead, and raised both arms over his head, not just the right arm. Ross said, “My left hand is not dead. And again he said, “My left hand is not dead.”
About a month ago, Jeremiah put Ross’s watch on Ross’s arm. Ross looked at the watch and said, “Brother, wrong!.” The watch was upside down and Ross couldn’t read it.
On Monday, the Occupational Therapist told me that Ross was touching the words in the book they were reading as she said the words.
We received a catalog from a company from which I have purchased clothes for Ross. I said, “Ross, I thought you might like this. That is where I buy clothes for you.” Ross looked inside, folded the catalog close to his chest, and said with a smile, “For my body.”
The other day, Jeremiah had Ross standing in the electronic wheel chair. Jeremiah usually places a yellow yoga block next to Ross’s left ankle to keep the ankle straight. Jeremiah had not put the block in place when Ross said, “Brother, brother.” When Jeremiah looked at Ross, Ross pointed to the yellow block to remind Jeremiah.
One final story that had Rusty and me in tears. I was in a store and saw flash cards, simple addition and subtraction. We have many flash cards, and Jeremiah uses them with Ross every day. I realized we didn’t have any math cards; these were simple with just single digits. When I gave the cards to Jeremiah, he immediately started working with Ross on subtraction. Ross read the problems out loud and gave the answers (not seen). For example, one of the cards looked like this: 9 Ross said without any help, nine minus 7 is two.
Clearly, the information is there. Ross has just needed to heal enough to access it. As we have been told, we do not see a ceiling on his progress.
Onward and upward! We could not do it without the love and prayers of all of you.
July 14, 2013--update and new photos from Betsy:
Why is Ross so happy? He just completed a task he set for himself. After lunch, he decided to spread the two towels out neatly on top of each other. It is not easy because the smaller towel on the bottom is not completely flat. But Ross is tenacious, and he tediously straightened the top towel at each corner.
He did this completely with his right hand. Jeremiah tells me that Ross did the same thing the previous day. As you see, when Ross turned to look at me, he was immensely proud of his work.
The big story for the last month is that Ross’s new orthotics are helping him to walk much better.
Ross is now walking with assistance from his room to the family room, about 50 feet one way, frequently five times a day. Sometimes, he decides to go outside through the garage, across the driveway, and in the front door. He also likes to detour by the cars, and often wants to get into them. Jeremiah is very good at letting Ross decide where he wants to go, and trying to make it work. As you can see in the picture, Ross’s posture is better when walking and Jeremiah is just providing the security of his hands, not primary support for Ross as in the past.
Ross is also enjoying making music. Letha, the OT, found drums for Ross at a garage sale. Ross loves playing them as well as playing chimes that were Ariel’s. Sometimes, he loves banging, but more frequently he plays rhythmically.
As I have reported, Ross has been pedaling a stationary bike while seated in his wheel chair for a number of years. He usually pedals for 30 to 60 minutes, often while watching a cycling video. He has recently started lifting small weights with Jeremiah, and one day expressed interest in the Total Gym after Jeremiah had finished a work out. As usual, Jeremiah used his ingenuity to make it work. Ross has the handles in his hands, and is doing rows and curls from his chair.
I have a final story about Ross from today. He was sitting at the dining room table, eating and looking out the window. He frequently looks at the mountains and the valley from that window. Today, he said something new about it. He said, “It’s a world outside..” One of us said, “It’s mountains.” Ross replied, “ It’s a world. A world called America. We are part of the world.”
Thank you all for your love and prayers for Ross. As you can see, he is more and more with us.
June 3, 2013--it's been eleven years since the fateful day of Ross's injuries. I just received a brief note from Betsy:
I am shocked that it has been two months since I wrote. We have had lots of emotional sunshine (Ross making advances) and enough rain (sorrows and setbacks). Since we are very sad today, the 11th anniversary of the terrible incident that changed Ross’s life, I will not say more than how grateful we are to everyone who has stood by us through the dark days and the sunny ones. Ross was given such a terrible prognosis in 2002, and he continues to confound that gloom. He brings joy to us every day, though we cry about every seizure.
The good news is that he continues to progress and enjoy life. My next update will list all of the good things that have happened in the last two months.
Thank you so much for your prayers, love, and support. We could not do it on our own.
Rusty, Betsy and family
April 5, 2013--Just got a really fun update from Betsy:
I am so happy to tell you about Ross doing something wonderful and brand new. He told Letha the OT about his experience e of eating. What follows is from her clinical notes on Thursday, April 4.
Client had just finished eating at OT arrival. He was a little distant (less than fully present). When offered the heavy blanket, he said no and pointed to OT; “for you.” He then began telling OT;
“The food goes in my mouth [demonstrated putting food into his mouth c 2 fingers.
It goes into my head, in my head.
It goes down [motions from chest toward stomach] into my body, my body.
It expands and makes me happy.” [lights up in a smile and extends arms to sides]
Writing on etch a sketch, he asked OT her name. Ross wrote: A, R, I, then turned the I into an E. He wrote another E, then L. He kept going doing 2 letters of the alphabet; AA, BB, CC, DD, EE, FF. OT asked; “What’s next Ross?” He wrote; G. OT tried to continue but this was it.
As usual, it is time to make more food. Hopefully, I will send more soon.
Onward and upward.
March 25, 2013--I am convinced Betsy senses when I'm getting ready to bug her for an update. Had planned to write to her tonight when the following arrived:
Whew! The last two months have been hectic. In early February, I realized that Ross’s weight gain, a side effect of one of his anti-seizure medications, might mean that his g-tube needed to be larger. He still needs the feeding tube because of seizures, and for the occasional times when he cannot safely take food, water and medications by mouth. I called a nurse who knows about this particular kind of tube, and she confirmed that he did need a larger size. However, she did not have the measuring device for determining the right size. I glibly said I would get a prescription from the doctor and order it. That was the start of a harrowing ten days when I spent many hours at the computer, trying to find this simple tool. I found only a handful of suppliers, all of whom, for one reason or another, could not help me. One kind man called from a New Jersey supplier to say his company did not ship to California, that finding the item would be hard, and that they were sold only by the case. Finally, I found a local pharmacy that could order a case, but delivery would take two weeks. What a pickle! We were worried because several nurses we consulted said it needed to be replaced a.s.a.p. We couldn’t even order the new size until we had the measuring tool. To make a long story shorter, a friend suggested another pharmacy that told us they could order just one, and have it in three days. With having the new tube shipped by air, we were able to put in the larger size ten days after starting the process. We explained to Ross what was happening, and he seemed to understand. In fact, when we had finished putting in the new larger tube, Ross said, “Thank you.”
Three days later, Ross had a grand mal seizure, much milder than in the past. We gave him the medication to stop it, but over the next hour, the seizure subsided and then started again. Since we had given him the maximum dose of the medicine that we can do at home we called 911, and the paramedics thought we should go the hospital. He was checked for pneumonia and other infections, and nothing appeared to be wrong. After five hours, we brought him home. Post seizure, Ross was unable to eat or drink for twenty-four hours, once again confirming that the g-tube is still needed. While we knew that Ross was not seriously ill, these times bring back the feelings of grief, stress, and helplessness that never completely go away. When Ross was back to normal a day later, he was bright and sharp, and once again we are seeing him make new progress. It really does seem that over the years, when he is making significant advances, at some point his brain needs to reset.
For the last month, Ross’s cognitive progress has been significant. One of the high points is that Ross is playing bongo drums. Letha, our wonderful OT, had been offering him the opportunity to drum, using a drum stick, drum pad, and a tambourine. He also was playing chimes that had been Ariel’s, but he was drumming them too. I was very impressed with a ten minute recital, which showed great stamina and some rhythm, and was very primitive. A week or so later, Letha found a set of bongo drums at a garage sale. Ross was initially tentative, but was clearly interested in playing. With the tambourine next to the drums, and Letha showing him, Ross was playing with a decided beat and adding in the sound of the tambourine. Ross is now enjoying drumming, and his drumming is a little more coordinated. The best part is that Letha saying the drumming is calming for him, and a way for him to self-regulate his nervous system. She also noted that his jamming with her and Jeremiah is a higher level of community. Previous examples of his “community participation” are when three or four of us play ball with him, or at Thanksgiving when he was miming with the guests.
While Ross is becoming more aware of others, he is more aware of himself. Several times when Jeremiah was exercising, he has said to Jeremiah, “Brother, I want to be like you.” One time, Jeremiah was lifting weights, and the other time he was repeatedly lifting his arms. Jeremiah is now doing weight lifting with Ross, using very light hand weights. We also see Ross independently lifting both arms repeatedly, and also experimenting with different ways to close his right hand into a fist.
Last week, Ross decided to go outside on his own. Jeremiah was cleaning up after lunch, and Ross was still sitting at the table. Ross backed away from the table and went to the front door. He turned the dead bolt, turned the knob and opened the door. He tried to kick the screen door open, but then pushed the handle, and used his right foot to open the door. By this time Jeremiah was behind the wheel chair, and ready to control the chair if Ross were in danger. Ross went down the ramp, out past the chicken coop and around the drive way. These times of self-direction and executive function are occurring more, and calling us to an even higher level of vigilance.
A few days ago when Ross was peddling the bike from a recumbent position, Jeremiah pointed to a picture of Ross on his bike on the wall. Jeremiah said to Ross, “You used to ride your bike a lot.” Ross proceeded to talk, some of his words not clear. Ross used hand gestures and words to say, he used to “go around and around, and up and down, and then my head was hurt.” He repeated this several times. As time goes by, I think Ross remembers almost everything from before, but the limitations of short term memory, speech problems and his physical disabilities restricts his full expression. As I write, I imagine Ross’s experience is like being locked in a room with memories, feelings, and experiences, frequently jumbled as if a storm has hit, but little of it is gone.
For those of you who are interested, Letha (the Occupational Therapist) recommended a book that I am finding very helpful. “In an unspoken Voice: How the Body Releases Trauma and Restores Goodness” by Peter Levine Ph.D.
We are blessed that Ross continues to progress in his rehabilitation. I hope that his progress offers hope to other families. Thank you for your prayers and support.
January 31, 2013--Betsy must have known I was planning to write and ask her for an update--it just arrived:
I apologize for being so late in writing an update. December was very busy, and January seems even more so. All is well, and Ross is continuing to move forward in both cognitive and motor skills. His understanding and communication have become more sophisticated. I will share some of the things Ross has said recently. One day, when we were out of sorbet, I improvised by grinding up frozen blueberries with water. When I removed the “ice cream” from the freezer, it was a block of blue ice. I was chipping away pieces to feed Ross when he asked, “What is that?” When I told him, he seemed to understand. I don’t remember him asking what his food was before. On another day, Jeremiah had given Ross raspberries in a bowl and he told Ross to use his fork. Ross said, “No, I have a hand.” He proceeded to pick the berries up with his fingers.
A friend gave Ross two jigsaw puzzles for Christmas. They both are animal scenes, one has light colors and a few animals like a beaver and a raccoon. The other is of darker colors and more ferocious animals. Ross has been working the first one by himself and completes it quickly. However, he keeps moving the second puzzle away when we ask him he if wants to work on it. I think that the second seems scary to him. In the meantime, his favorite jigsaw puzzle is a big picture of a fire truck.
We made a trip to Petaluma yesterday for an orthotics appointment. Ross is being fitted for orthotics that will allow him to walk independently. We had a good drive and he seemed to understand my monologue about how Petaluma was when we lived there, and how much it has changed since we moved eighteen years ago. Also, he kept telling me when to stop at red lights.
He is moving around the house on his own in his wheelchair. It is a treat to see him come down the hall into the kitchen on his own. When he is going to the dining room table, he comes toward the table, then backs up and makes a perfect entrance to the twelve inch space where a leaf in the table gives him proper leg room. It is like watching a driver back into a parking place.
When we saw the neurologist last week, Jeremiah was telling her that when he is heating up Ross’s food, he tells Ross to go to the table and get ready to eat. Ross goes to the table and positions himself, then he pulls the place mat forward, carefully makes it line up properly with the edge of the table, and waits for his food. He also puts down his spoon when he finished and puts down his glass instead of dropping it on the floor. One recent change we have noticed is that he eating more slowly (instead of shoveling it in). He even sometimes puts down his spoon, picks up his water glass and takes a sip, puts the glass down, eats some more and repeats the process of stopping to sip water. We believe this is a sign of being more organized in his thinking, and purposeful in his actions.
Jeremiah told us that when he and Ross were in the therapy room the other day, Ross stood up from the plinth, using the transfer pole, walked to his chair and sat down. When they finished, Jeremiah did a little bit of work himself on the total gym. Ross said, “Brother, I want to be like you.” Jeremiah let Ross pull the strap toward himself.
As I write this, I am watching Ross work a three dimensional puzzle that accepts different block shapes. Since it is almost 6PM and he is tired, he has left out four blocks that are similar. Earlier in the day, he would have finished the whole puzzle and moved it to the back of the table.
We are very thankful that Ross is doing so well, and it is hard not to constantly want more. Thank you for your support and prayers. We wish all of you a blessed 2013.
December 13, 2012--a quick update from Betsy:
Time flies when we are busy. We have had an active and good month. Ross had another grand mal seizure two days ago; again it was mild and he has quickly recovered. Rusty just told me that Jeremiah said that Ross has been awake and partying (laughter and banging on the side rail of his bed) since 3:30 AM. Rusty asked Ross, “Ross have you been awake since 3:30?” Ross answered, “Absolutely.” This jumbled sleep is probably related to the seizure. Yesterday, Ross, the man who always wants food, rolled himself away from the dinner table, rejecting his food, maybe because of the green broccoli. He had refused the green vegetable puree a few hours before. We ground the meatloaf and broccoli into a puree and put it back on the table. After exploring the room and looking at different things for about fifteen minutes, he returned and ate dinner. This again is new advanced behavior that has occurred right after a seizure.
Ross is reading the newspaper, children’s books, and through the day Jeremiah communicates with him by writing questions on the Etch a Sketch. One message yesterday was “Ross I want you to take a rest time.” Ross then allowed himself to be pushed in his wheel chair back to his room.
Thanksgiving was the best yet for Ross. Thanksgiving has always been his favorite holiday, and he always made sure to come home for it. After eating second helpings of everything, then pumpkin pie, Ross started a game with the people at the table, making funny faces/miming. Ross was totally and pleasantly engaged in the interaction for at least fifteen minutes. Then he was very tired, and Jeremiah took Ross back to his room to rest. Not too long after, Ross again was holding court with our extended family of friends. Onward and Upward!
November 5, 2012--it's been a while, but got a great note from Betsy tonight:
The last month has been a blur. Ross had a grand mal seizure in early October, but it did not last very long and, as usual, when he recovered from the seizure, he seemed not to have been harmed by the event. He is walking better, talking more, and demonstrating increased understanding.
Letha, the occupational therapist has been working with Ross since 2005. Yesterday, after his session, Letha said “I have been waiting for this day ever since I started working with Ross”. Everything seemed to click. When Letha arrived, Ross asked her how old she was. She asked him how old he thought she was. He started with four. She told him that she was older than four, and to try again. He proceeded to accurately count from four to sixty. When she asked him if he was ready to get out of bed, he pulled himself up and walked to his chair with little assistance. A little later he read what she wrote on the Etch a Sketch. She had written November 5, 2012. Ross read it back to her correctly. When they did a puzzle, Ross was able to put the pieces together to make the frame. When he became tired, he pushed himself away from the table and took a rest break. We are all celebrating his progress.
One day about a month ago, Ross’s eyes were red, particularly the left one. It looked as if there was something irritating it. I said, “I think we need to wash it.” I went to the kitchen and brought back a very small glass filled with sterile water. Ross reached for it and to avoid a conflict, I gave it to Ross. I was sure he would drink it. To my surprise, he moved the glass over his left eye, and poured the water on it. He had understood the whole interaction.
The following week, Ross had his annual visit with one of his doctors. Ross was a champ. Again, he had no outbursts of fear or confusion. In fact, Jeremiah remarked that riding in the van seemed to calm Ross. This was the second car trip which he enjoyed. He was also very calm and interactive with the doctor. Ross needed lab work and with trepidation we decided to have it done at the lab downstairs from the doctor’s office. Even though the tech had trouble with his left hand, the one that is always used for blood draws, and had to use his right hand, Ross was wonderful. He started calling the technician “Honey”, and when she finished he said, “I love you.”
Jeremiah has Ross on the floor on the mat almost daily. Ross’s strength and flexibility as he rolls around to capture raspberries is so much better. He is continuing to read more and more. I look forward to the day when he doesn’t have to have assistance for almost everything he does, and I am thankful for his incredible positive attitude. Onward and upward!
September 30, 2012--Received an update from Betsy, and am also including her note to me:
Hi Kate, I started writing this update weeks ago, but life and my forgetfulness kept getting in the way of finishing it. I hope to send another more recent update soon. I hope all is well.
August 24, 2012
I am so proud of Ross today. We usually take Ross to the dentist once a year which requires an oral surgeon, our dentist, a dental assistant, and a hygienist because Ross has to be sedated. We were unable to keep Ross’s appointment last year because of his hospitalization and subsequent fragility.
Always before, Ross has had a hard time not being able to eat or drink for eight hours before the appointment. When I talked to him last night about his dental appointment, he nodded affirmatively and opened his mouth wide. Today he has been super cooperative. He didn’t ask for food, he helped when we transferred him from bed to wheel chair, and he did not become upset during the thirty minute drive to the dentist. He definitely knows what is happening, and is cooperating with us. The dentist is very impressed with the condition of Ross’s teeth, and he says that good nutrition and thorough teeth brushing is obviously the reason.
We are continuing to watch the Petaluma Little League team play in the World Series. Ross is actively engaged in watching the games, and I think he even remembers that he once played Little League baseball when we lived in Petaluma.
One last note about Ross’s progress. Yesterday, Jeremiah called me in to see what Ross was doing. They were using Skip Bo cards and Old Maid cards. Ross first lined up the Old Maid cards from 1-10, and then he lined up the Skip Bo Cards 1-12 directly below the first row all by himself. Afterward, Jeremiah brought out a deck of Sight word cards. He would show a card to Ross and Ross would either say the word or spell the word, sounding out each letter. Jeremiah wisely only had Ross do about 30 cards because the whole set would have been too tiring.
Rusty and I are elated. As many families have discovered, there is hope after a TBI. Onward and upward!
August 21, 2012--just received an update from Betsy:
Hi All: We have been watching the Petaluma Little League team play in the Little League World Series.
This is especially meaningful because not only does Ross love baseball, he played Little League baseball when we lived in Petaluma. On Sunday, I walked in and spoke to him while he was watching the game. He let me know that I was interfering with his concentration. A little later, he started gesturing with his left arm in a swinging motion, and then raised his right hand to hold the bottom of his imaginary bat. (Raising his left arm is not easy for Ross.) As you can see from the picture, he was having great fun.
Onward and Upward!
July 16, 2012--New update from Betsy:
Ross has made a nice recovery from the setbacks in May that were related to the substitution of his medication. He is now more conversational and much more able to tell us what he needs and wants. He is also walking more. We are using his leg braces more, and this gives him the stability to walk without leaning on Jeremiah as much as before. We have also been giving him more standing time in the power chair. He spends about thirty minutes standing each day while he works jigsaw puzzles.
There have been a couple of times in the last week when Ross let us know that he was having a partial seizure. The first time, he called out to Jeremiah, “Brother, brother!” Jeremiah saw from Ross’s face what was happening. Ross said, “Home, home!” Jeremiah asked if he wanted to go to his room and Ross said, “Yes.” When he went to his room, Ross pointed to the photon stimulator. Again, during the weekend, Ross felt his mouth contort and started making an alarmed sound, while pointing to his mouth. Because he seemed in pain, my first thought was that he had bitten himself. I realized he was experiencing a partial seizure. Again, he indicated that he wanted us to use the photon stimulator. (The photon stimulator relies on a special light to calm the sympathetic nervous system.)
One day recently, after his shower and being dressed, Ross indicated that he wanted to walk to the living room. While Ross was walking, as always with Jeremiah’s help, Ross kept saying, “Thank you; I love you!” One day, Letha the OT asked if she could wipe her fingers on his towel. Ross very calmly replied, “I don’t care.” Ross is continuing to copy words; last week he copied the word Nature on his Etch-a-sketch.
It has taken years for me to accept that Ross having seizures because of a traumatic brain injury means that he has TBI induced Epilepsy. Since I accepted this idea last summer, after he was hospitalized with seizures, I have been receiving e-mails and articles from www.epilepsy.com. This includes articles from the Epilepsy Therapy Project. I highly recommend this website because it discusses many aspects of living with seizures, not just seizure medications. Of course, every one is an individual and no one thing works for every one, but the web site does discuss different ideas which have in turn helped us to understand more. For example, one recent article discussed the relationship between seizures and inflammation markers in the body.
Thank you all for your loving kindness. We know we are not alone in this journey. Onward and Upward!
June 9, 2012--I've just received an update from Betsy, and now understand why I've not heard from her:
I have considered several ways of starting this update that is so long overdue. I feel the need to be upbeat and to truly reflect the many daily blessings in our life. Our new granddaughter, Marley Mae, is a beautiful gift to her parents, our daughter and son-in-law, and to us. When Ross saw her the first time, he said, “I love you. I will love you forever.” I feel so at peace when I am holding her, and as I tell her, “We tell stories to each other.” I have forgotten the lullabies I once knew, and I will have to relearn them to sing to her.
The other part of our life, with our precious Ross, has been very rocky for the last three weeks. After a seizure free year, except for two small seizures due to excitement, Ross had two grand mal and five partial seizures within an hour on May 19. It was so scary because the usual medications did not stop them. Thankfully, our wonderful neurologist responded to my call and helped us make the decision to go to the Emergency Room. She called ahead and amazingly the ER was not slammed with Saturday night emergencies. To top it off, we had a good ER doctor and a good EMT team that delivered him to the hospital. From the start of the seizures at 8:30 P.M. to home again was less than five hours.
The post seizure period the next two days were hard because he did not bounce back quickly. We had to give him his medicine and food through the feeding tube we have kept for emergencies. The neurologist reassured me, saying that this was different from other times because the combination of anti seizure meds was different than before. She was so right. By Tuesday, Ross was taking everything by mouth again and improving in alertness.
A week later, on June 2, Ross started to have a high heart rate, and to spike as high as 160. In addition, his oxygen sat rate occasionally went below 90. This went on for two days. Ross’s pulse was down in the 80s with good oxygen saturation levels by Monday afternoon. As I was thinking about possible reasons, I suddenly remembered that the pharmacy had substituted one of his medications with a generic from a different manufacturer at the end of April. (I knew because the pills were a different color.) When I picked up the refill at the end of May, they had gone back to the original generic.
On Wednesday, we met with the neurologist and I told her about the medication change. What she said will be of interest to those who take care of loved ones with brain injuries. She said, “Generics often work, but seizure drugs are not the same, and are not to be substituted with generics.” I am convinced that the substitute Keppra is the reason Ross had to go through this. The doctor has told the pharmacy not to substitute, and I will check every time I pick up a refill for Ross. Ross is back to normal vital signs and he is definitely feeling better.
One other mishap happened along the way, and Friday brought a happy ending. On Sunday, Ross’s hospital bed stopped working. Rusty called and ordered a new motor on Monday, and it came yesterday. In the interim we had a “high tech” solution – we used different lengths of lumber to prop up the head portion for different positions. My husband is an accomplished tinkerer and he installed the new motor in this wonderful bed that was given to us when we brought Ross home nine years ago. The bed is still working hard, making life safer and easier for Ross and for us who take care of him.
Of course, amidst all of this, June 3 was the tenth anniversary of Ross being terribly injured and disabled. I agonized before Sunday about what I would write. As it turned out, we had no internet service that day, and I was so worried about Ross that I couldn’t calm down enough to write. This year I have been so aware of what Ross and we who love him have lost. I miss the old Ross so much, and I love the Ross we have now very much. I am proud of him, his determination, his incredible progress, and his loving sweet spirit. He inspires all of us to keep chugging along and to do our very best. As I think about it, I remember the fairy tales that ended, “They lived happily ever after.” I think many of us want that, and certainly I believed it was possible. Now, I know that for everyone, there are good times and bad times. There are joyful moments, and no matter how bleak it sometimes seems, we are very blessed that Ross is with us. We are also blessed by the people who have reached out to us over the last ten years. Thank you so much for your love and support. God bless you all.
June 3, 2012
It's been ten years today since Ross was hit by an inattentive driver while on a training ride on his bicycle. Please hold Ross and his family in your thoughts and prayers as they continue this long and difficult struggle.
© Kate Douglas 2010