May 28, 2010--a report from Betsy:
When I last wrote, Ross was scheduled for an ambulatory EEG. We took him in to San Francisco to have the electrodes attached, then a turban wound around his head to hold them in place. He did well under the circumstances. It took about an hour of sitting quietly with no entertainment except his silly mama and some crackers. At home we were able to record both a small petit mal seizure and a grand mal seizure in the first thirty hours, which meant Ross did not have to endure having his “gear” attached for a whole seventy-two hours. Ross’s sleep was disturbed for a few nights afterward; he didn’t sleep at all one night, and he was very animated during the day. Rusty’s experience with neurofeedback leads him to believe that the passive EEG equipment does create a small amount of stimulation and Ross, with an injured brain, was very sensitive to it. The EEG showed that both seizures and some nighttime spikes had come from the same spot in Ross’s brain, the right temporal lobe.
The next step was the medication adjustment. Ross has been on the neurologist’s protocol for tapering off Tegretol for about a month. He now is almost completely off Tegretol and on a maintenance dose of Lamictal and Vimpat. I would never have imagined that the medication change would affect Ross’s cognition so much. He is dramatically more aware of himself and others. His speech is more complex and relevant. For example, we were watching the last stage of the Tour of California and then footage of an old Tour de France on television. Ross watched intently, and after a while he said, “It is just a bike.” And “this is an international race.” He has also started watching Jo, the dog, and, for the first time in eight years, he is now enjoying her antics. He pets her; he tells her “Be quiet” when she is barking. One day, he looked at his watch and said “Oh no! It is five o’clock.” And it was.
Cognitive exercises that used to cause small seizure activity don’t now. He is typing, using an adaptive keyboard, and instead of just hitting keys, he is looking at the screen to see what he has typed. He is sometimes writing his name on the computer. Yesterday, I wrote on his paper, Ross Juan Dillon. Ross read it aloud, and then copied it himself. His puzzle activity is improving with the harder puzzles, and concurrently he has more flexibility in his right hand and increased use of his left side, arm, hand and leg.
Another example, we were watching television. I was talking when the programs we watch started. Ross said insistently, “Mother, Mother” to get my attention. When I looked at him, he nodded at the television to indicate our program had started. One last incident, Ross’s old humor is back. “I hate you. You are ugly. Just kidding.”
Another story, I was wearing the orange Team Ross shirts we had made eight years ago. Ross looked at the shirt, written in cursive, and said “Ross! That’s beautiful. That’s beautiful.” Onward and upward! Thank you for being part of Team Ross.
April 12, 2010--A quick note from Betsy about the video:
I just realized as I watched the cycling video that Ross was singing and the words were; “I am the king!” “Up!” “I love you.” “I am a man. I am your father. No! I am your brother!”
Ross had a very good therapy session today with lots of standing by pushing down with his hands, coming up to a squat and then standing. He did it many times and his sitting down was also controlled. Letha was very pleased. After lunch, he seemed to be on the edge of a seizure, but it passed.
Betsy
April 10, 2010--I just got an update from Betsy, along with a video:
We went to see the seizure specialist on Wednesday. As expected, the doctor wants Ross to have an EEG. This will be an Ambulatory 72 hour EEG, and we hope to capture a EEG record of seizure activity during that time. Ross has an appointment to have the sensors attached, and then we will bring him home. He will miss his daily showers, but the rest of life will go on as usual. After the EEG is finished and the physician has evaluated the information, we will start to reduce the Lamictal. I am so glad that I have kept daily records for the last almost seven years. I plan to go through them soon in order to see if there were more seizures connected with any one of the medications he has taken.
Ross is not having obvious seizures at this point. He is doing very well in therapy. His transfers from bed to chair are becoming easier, though he still needs help for safety. He is pulling himself up to standing by himself using the transfer pole (it’s too bad the pole doesn’t move with him). He also can now scoot himself on the seat of his chair (with the seat belt on) around to see what is behind him. He did that the other day. He was sitting at his table after eating, and was very tired, almost dozing. I was behind him working at the table and looked up to see he had scooted around (a grin on his face) to nonverbally asking me to put him in his recliner.
He has been sleeping very well except for one night last week when he was awake from 2 AM on. He is doing much better with the jigsaw puzzles, especially since we have numbered all the pieces. The numbering enables him to have an additional strategy besides the shape of the piece to use in figuring out where the piece goes. One disclaimer, he is not doing these 100 piece puzzles by himself, but is an active participant; he is very happy when he puts the piece in the right place.
He is trying to put everything, including puzzle pieces, in his mouth again. It is nerve wracking because we have to watch him very carefully. We are clearing the space on his table since he can lean forward and reach more things. Today, he reached over and picked up the hand mirror that we keep on the table and put it in his mouth. Since it could break, I removed it. He is also asking for food immediately after eating. I suspect that this oral fixation could be associated with being over medicated. He is also much grumpier and stubborn. He is highly reactive to unexpectedly being touched, although he does signal Rusty and me to lean forward for kisses.
He is also reading words on television, not just the letters. Rusty has set up an old lap top computer for him to use. Ross has now made the connection between pushing a key and the image on the screen. Last Sunday when we had many friends here, he said, “Patricia” (one of our friends) for the first time. He frequently points to his recliner which means he wants us to move him there. He can now sit and rock himself for a long time, up to an hour. His left foot is even flat on the floor at these times, something we have been working on for years. Things are slowly getting better. Onward and upward.
March 31, 2010--a really encouraging update from Betsy:
Ross is doing so much better. I feel that the new medication, Vimpat, is the key. Ross had a great weekend. He has been talking in complete sentences and the seizures have stopped. When he pedaled on Sunday, I couldn’t believe how fast he was going. I think the filming worked, but I haven’t had a chance to send it to YouTube. In the first couple of days after starting the Vimpat, I would see Ross look to the right side and then slowly turn back. It seemed that he was starting a seizure and then it would stop. This is consistent with the description of the drug’s effect - it prevents seizures from happening and stops them. Obviously, we are hoping that this is going to enable us to reduce the other seizure drugs. We will see.
Ross’s neurologist instructed us to reduce the Lamictal by another 50mg a day starting Sunday. On Monday morning we increased the Vimpat. On Monday we saw some pre-seizure activity, more volatility and confusion. Again, I think this was because of reducing Lamictal. By Tuesday he was doing much better. While he has occasionally been confused and volatile, he is continuing to improve.
I have been delighted this week with his comments. “Who are you?” I answer that I am his mother. He answers with a big smile, “I love you.” Today he said, “I am happy that I am the king and can have food.” He has also said several times, “I have a name.” I ask what his name is. He says, “Ross.” He said to Rusty, “I am who I am.” He is also doing much better with transfers, standing up with more control and moving from one place to another. He is also scooting himself around on the seat of his chair in order to kick the ball when it rolls to his right side. We are very grateful for his progress. Onward and upward!
March 22, 2010--an update from Betsy:
The beat goes on. Ross is better, but still having the Aversive Seizures of last week, although they are not coming as often. He also had a two stage grand mal this afternoon. We are starting the third medication tonight, and then hopefully reducing the Lamictal down to the previous dosage. Ross’s appointment with the seizure specialist is April 7 in San Francisco. This is so hard on Ross, and not easy for the rest of us to see him go through this. Thank you for your prayers.
March 20, 2010--a more positive message from Betsy:
Ross is so much better this morning. The only change is the reduced dosage of Lamictal; we decreased the 6 P.M. dosage last night. Before that, for an hour and a half I sat next to him timing the seizures and intervals between. The interval between seizures averaged about seven minutes and the seizures were from one to two and a half minutes in duration.
He didn’t go to sleep until 11 P.M., slept fitfully for an hour and then slept until 5 A.M. He had turned on his side and drawn up his legs during the night--another good sign. His swallowing when we gave him his medicine and food was much better. He went back to sleep for three hours, had breakfast, went back to sleep is just now waking up for lunch. All of the seizures over the last five days were so exhausting and he is so tired. We are grateful that he is able to sleep today. We have seen no seizures today and this is a big improvement. This morning his pulse rate was 65; the last five days he has averaged 85 up to 110.
We hope we are on the other side of this. Lamictal may be good for other people, but not for Ross.
Thank you for your support.
Betsy
March 19, 2010--more from Betsy:
We just came home from seeing the neurologist. Ross is feeling a little better, and the doctor was able to see what we have been seeing all this week. Instead of calling them Absence Seizures, he calls them Aversive seizures. Today I have timed some of them and they last between one and a half to two minutes. Ross is very tired and that is probably because of the constant seizure activity. The doctor does not think they are causing more damage, which is good.
The question of why is unanswered, but since the Lamictal dosage is the only thing that has changed, we are starting to decrease the Lamictal amounts tonight. In a week we hope to have the dose back down to where it was a month ago. There is a new antiseizure medication that might be a good replacement for Ross’s other seizure medications. After Ross has recovered from this ordeal, we will explore the new medication. The process is likely to be long and tedious, but we are being referred to a doctor in San Francisco for consultation.
This is so disheartening; Ross has been doing so well and to have this episode is not fair. But then, often the world isn’t fair. Please keep him in your prayers.
March 19, 2010--Ross is still having problems:
Ross is still having a hard time. Rusty and I feel that it has to be related to medication changes. Exactly one month ago, we agreed to try raising Lamictal and then trying to get Ross off Tegretol because of Tegretol’s serious side effects. Increasing the Lamictal is the only thing that has changed. As observers it is hard for us to determine if he is having constant small seizures or hallucinations or both. We are taking him to the neurologist early this afternoon. Please continue to keep him in your prayers. We are so grateful for your support.
Betsy
March 17, 2010--just heard from Betsy:
GOOD NEWS! It is 7:30 P.M. and we just came home. Ross’s doctors agreed that sleeping at home was far better for Ross. The tests: blood test, X rays and CT scans all came back showing no problem. I think the absence seizures were probably because he was fighting a virus. Those seizures could have been harder on him than we realized, although we were pretty concerned. Then the two grand mal seizures added more stress. One of the doctors thinks that today Ross was suffering from postictal (post seizure) confusion and lethargy. He is looking better now, while still affected by the sedatives given to keep him calm for the x-rays and CT scan.
I have to say that we had a wonderful experience with the nurses and doctors today. We even talked to a nurse who had taken care of Ross in ICU in 2002.
Thank you everyone for your prayers and thoughts.
Betsy
March 17, 2010--a quick update from Betsy:
A quick update about Ross. He slept well until 4:30 A.M. when he woke up and had a grand mal seizure. It was intense, but the shaking part lasted for only five minutes, in contrast to previous ones. The whole episode from start to calm was about 15 minutes. We thought that was the end of it, but he awoke at about 8:30 A.M. with another grand mal, although much less intense. He went peacefully to sleep, but now is awake and keeps turning his head to the right and is much less responsive. I am waiting for a call from the doctor. I will keep you posted.
Betsy
March 16, 2010--Something we've not seen for quite some time, but Betsy has asked for your prayers for Ross--she wrote:
The last day and a half has been a roller coaster ride. Ross has been having very frequent near grand mal seizures. They are really absence seizures with a little bit of trembling of his right hand. The problem is that they are hourly or more often, except when he is asleep. It occurred to me that you could put this on the web site and ask people to pray for Ross and all of us who are trying to understand. I should say that in the midst of all this there are wonderful moments of contact and interaction.
Thanks,
Betsy
March 11, 2010--a brief update from Betsy:
There is so much to report about Ross’s progress. This first installment is about the Grasshopper nearly three weeks ago. It was an impressive event with a large number of riders; I heard there were three hundred. We were all bundled up because of the cold and greeting old friends and meeting new people. Ross seemed to be more present and aware than on other occasions like this. One man came up and introduced himself. When the man said who he was, Ross said to him, “How are you?” We have never seen Ross do that before. Later, Miguel, the organizer came over to talk. I noticed that Ross moved his right hand the way he usually does in order to shake hands. When I mentioned that I thought Ross wanted to shake hands, Miguel turned and shook hands with Ross, and it seemed that Ross made eye contact with him. It was a very touching moment. When all the riders rode away, Ross seemed to want to be riding with them. I think he identified with cyclists on their bikes for the first time since his injury. I asked him about it because he seemed wistful. His nonverbal response was a slight nod.
Ross is now pedaling about an hour each day and is pedaling harder; this is in contrast to the last six months of lackadaisical pedaling for maybe half an hour.
I am enclosing a picture of Ross and his sister Ariel taken at the Grasshopper. More later.
February 13, 2010--latest update from Betsy:
It has been three weeks since we posted the video of Ross walking. Now that I have discovered I can film videos with our digital camera, I am eager to do more. I will have to think more like a photographer and always have the camera ready to capture Ross at the beginning of an “O wow” moment, not after he has expended most of his energy.
Thank you to all who have written or called to say how excited you were to see Ross walking. Many people have asked me how Ross is doing now. The answer is that Ross is doing well. Is he walking by himself yet? No, but he triumphs in small ways each day. For example, during therapy on Wednesday, he walked on his knees while pushing a big exercise ball in front. He has been walking on his knees, but this day he was able to balance on his knees while also thinking about using his arms, and how to push the ball with his hands. All at the same time! It reminds me of Pinky Lee, patting his head with one hand while rubbing his stomach with the other hand and hopping on one foot, when I think about how difficult putting all those moves together must be for Ross. He is continuing to write numbers, his name, and letters of the alphabet. About a week ago, I showed him a book that had been given to his dad. The inscription, written in cursive, read, “Given to Charles Ross Dillon.” Ross zeroed in on the name, put his finger on the Ross Dillon words, and said “I am Ross Dillon.” Last night, while on the edge of a seizure and very confused, he lifted not only his right foot to put it on a chair, but also lifted his left foot. Lifting his left foot that high was another first. Today, when we went to the lab for blood to be drawn, the guy who has been a fearless champ at having blood drawn for the last year or so was resistant. He said “Sister”, talking to the lab tech, “Pain.” When the needle went in, he said, “It hurts!” As I talked to the lab tech afterwards, we talked about how progress brings other issues. The work will not diminish, it will just be different. Ross now feels more sensation in his left arm (where the blood is drawn) and he also remembers previous lab visits. I think that awareness was part of today’s resistance.
I am continually reminded that Ross’s progress is never a straight upward progression. It frequently involves a great “Ah ha” like the walking video, and then what can seem like a regression, then a small spurt in one area, then another spurt somewhere else, then a few down days, and then another “Ah ha”. In retrospect, it is like climbing a steep mountain. We take switchbacks, rests, and sometimes a brazen straight up, after which we have to rest. Isn’t that like life?
Rusty and I are so proud of Ross. Despite his terrible injuries, he continues to face the challenges with determination, persistence, and even joy. God is good!
January 15, 2010--this is just so cool--Betsy just sent film of Ross walking.
January 13, 2010--an update from Betsy:
There is the adage “When it rains, it pours.” Actually, it is raining now, and we need it to keep life going. I am not so welcoming of the metaphorical rain that pours into our lives, but it is also a part of life.
Ross is certainly a role model for me. In the early bleak days after he was hit by a car, I told him over and over that we would make delicious lemonade from the bitter lemons we had been given. And, indeed, Ross is making lemonade-he has responded to his predicament with determination and courage, even though his understanding is often clouded by confusion. One poignant example is his first smile in early December of 2003, six years ago. He had just awakened and was sitting up in bed, unable to move, and suddenly a beautiful smile spread across his face. Now we fast forward to night before last when he seemed to sleep through the night on his left side. He has started to roll over with his knees slightly bent and fall asleep. How normal!
Speaking of normality – a few days ago, after Ross had finished lunch, we cleared his plate, but left his glass of water on the table. Always before we have asked him to drop his spoon and then handed the water to him. After having his plate removed, Ross dropped his spoon, leaned forward and picked up the glass, sipped some water, and then put the glass, still partly full, down on the table without spilling a drop. This was another one of the firsts we celebrate.
Yesterday, during Occupational Therapy, Ross was pretty confused, but Letha, the therapist, was persistent and suddenly Ross not only understood what he was supposed to do, but made a breakthrough. The task was to walk without turning his feet so far inward that his feet become tangled. When he finally agreed to walk, he walked with his feet moving forward in parallel. He has not repeated it, but now we know he can. Later, I was talking to him about what Letha had said about the session, suddenly he had a beautiful sunny excited laugh. It seemed that he was remembering the event and was definitely delighted.
This reminds me of something the Lens therapist told Rusty recently. She admonished us to remember that Ross (and other brain injury survivors) can be ON (communicating and working well) and suddenly be washed with overwhelming fatigue and unable to do anything. We have started calling this Switching Channels. Ross can be talking, being playful and suddenly he is frightened and combative, or just so tired that he sits with his head bowed and minimal response to us. We do find that we can reassure him, even in his confusion. We touch him, we hold him, and tell him that he is safe. Usually he appears to come back, gives a little smile of recognition, and is calmer. As Ross becomes more cognitively alert, we see more channel switching all through the day.
Ross continues to read. I have pulled out the Richard Scarry books from childhood. I was reading one with him last night. He loves the humorous animal personalities and even seems to understand some of the word play. Last night he put his finger on the picture of a gasoline truck in the picture, and very clearly said, “What is that?”
Though life seems very hard these days, we know we are not alone. Thank you for being there with your love and prayers. Onward and Upward.
December 10, 2009--a brief update from Betsy:
Life has slowed down a bit for our family, and I have a chance to sit down and write. Ross has been having more small absence seizures, but he is also cognitively more aware. He is talking more conversationally and in complete sentences. Two nights ago Rusty was rocking Ross's bed a bit, and Ross said, "That's like sailing; that feels good." Yesterday, during therapy, Ross was doing really well and Jeremiah said, "Good boy!" Ross replied, "I am not a boy. I am a man."
After therapy today, Ross walked to the living room, with help, and sat in his recliner. He began to rock, and it was wonderful to see how he was using his quads, his core abdominal muscles and his head, all in a synchronized flow of movement. He sat, talking to us, doing an inventory of all of us as he frequently does these days. Jeanette (the PT) is my sister, Jeremiah is my brother, Rusty is my father, and I get to be both my mother and my sister. He also played with the dog and for the first time stroked her nose. Later, I took him to the lab to have blood drawn. His last blood test did not show any problems, except his Tegretol levels were a little high, and sodium a tad low. The higher Tegretol can be the reason for lower sodium and for the increased seizure activity, but we always double check before reducing seizure medication. As we were driving, he was watching everything, he told me that he loved me, and then he said, "I am happy." As always, when Ross is happy, we are happy.
December 1, 2009--an update from Betsy:
We have had the usual ups and downs in the last few weeks. Ross has had a couple of grand mal seizures in the last month, but many fewer partial seizures. Ross is enthusiastic about mastering the art of scooting himself from one end of the bench to the other. (Lifting his bottom off the seat enough to move a few inches to the right at a time.) He is practicing pulling himself to standing and walking around the pole with minimal help. He continues to read and is now doing simple addition and subtraction problems.His speech has improved. He is more conversational and he is talking to himself - one of the important steps in child development. The main theme is, "Ross, you are a man." Or, to me, he said, "I said to Ross, you are a man."
On Friday, Ross and I looked through two photo albums that a family friend created for him. One is a collection of pre injury pictures from Thanksgivings through the years with our extended family. There are pictures of Ross with friends Luke and Katie from their infancy forward, being held by Ross or later playing with him (they are now 15 and 17). Ross enjoyed the pictures of himself with with Luke and Katie, and with Ariel and Eva, a friend with whom he grew up. He shows his interest and pleasure by repeatedly touching the faces with his finger and smiling. The second album is composed of post injury pictures. As I showed him a picture of himself in intensive care, and another picture from when the doctors said he was in a vegetative state, I talked to him about how much better he is now. He seemed to understand and nod his head as I told him how proud we are of his hard work and progress He seemed able to understand that he has been getting progressively better over time. Of course, my interpretation is subjective, but I have come to believe that I do understand a lot of his nonverbal communication. This experience of what appears to be increased cognition is also demonstrated in other ways.
We were watching television last night. Ross looked at me and said, "You are my mother." He looked at Rusty and said, "You are my father." He looked at Jeremiah in the kitchen and said, "He is my brother." Then he said, "We are a family."
I have saved the best for last. On Thanksgiving, Ariel went into Ross's room. Ross was seated in his wheel chair with the seat belt fastened. He started pointing to the buckle of his seat belt. Jeremiah asked him if he wanted to open the belt. Ross nodded yes, When Jeremiah opened the seat belt, Ross moved his feet from the foot rest to the floor (this is the precursor to standing). Jeremiah held Ross's left elbow while Ross stood up. Ross gave Ariel a big hug, and sat down in his chair. What a wonderful gift for Ariel and the rest of us. We grieve for what is lost, but we rejoice in every step of Ross's recovery. Thank you to all of you for your wonderful love and support. You are part of Ross's healing.
October 24, 2009--My apologies--Betsy sent this update yesterday but I was out of town w/o Internet.
Ross continues to eagerly tackle challenges. One place we see this is in the way he leans forward in his wheel chair with good posture and sits that way for ten or fifteen minutes. He also does this when he wants to sit on the couch or wants to walk. I often realize that emotionally he is ready to walk on his own. The other day, during his session with the OT, he leaned forward, grabbed the transfer pole and sat down in his wheel chair with no help. He was so pleased with his accomplishment. He gave us the thumbs up sign, smiled widely, and said, "I am a man." A few minutes later, he said,"I am happy." He accented both syllables, hap py, which always sounds happy to me. Letha, the therapist, then took us to Ross's room and had him work on getting out of bed on his own. She had him sitting on the side of the bed, grabbing the lower rail to pull himself to standing, then turning to sit in his chair. He will need to practice, practice, practice in order to master the process, but when he can do his own transfers, without a strong body to help, it will be a big change in our lives, more independence for Ross and more vigilance on our part.
Another improvement is his ability to follow specific verbal instructions. We have sometimes seen this in the past, but during Thursday's therapy session he was able to correctly respond to most of Letha's instructions. In fact, when he is moving from the couch back to his wheelchair and seems confused about walking backward, I find that if I tell him to move his right foot backward, he does it. Our team of therapists is good about trying to respond to Ross's lead. For example, yesterday, after the stand, walk, sit routine, Ross wanted to walk outside. With Letha and Jeremiah assisting, he walked to the van, got in on his knees, and crawled up on to the bench seat. He happily sat there for a while. I went into his room a few days ago and he was squinting with his left eye; in fact, it was almost closed.I asked him if he was having trouble with his eye and he nodded yes. I gave him his eye patch, and Ross said, "Why does that (happen)." After I explained that head injuries can cause vision problems and that he is getting better, I realized that his question came from a new level of cognitive processing.
There are two more new achievements. Ross is putting magnetic letters together in order. This works if he does not have to choose from many letters at once. Last weekend, I almost precipitated a seizure by having all the letters on the table from which to choose. He put the letters on the white board in order A-F and I watched him try to make sense of all the letters, trying to decide between two letters (one was the next letter) for the next placement. He "hit the wall" and I could see a petit mal starting to happen. I put away the letters, and tried to reassure him. After lunch, he napped and then awoke and was okay. I felt terrible, but I was able to recognize that while he can do the alphabet puzzle, putting the letters in order as I was trying is a different modality and it needs to be structured carefully. One of our friends has made an amazing recovery after being thrown from a horse and she says that putting together nuts and bolts triggers petit mal seizures for her. I know of someone else who was no longer having seizures, but doing tongue twisters triggered a seizure. For Ross, it seems that sometimes an emotional recognition triggers a petit mal. Finally, I gave Ross an addition problem. I set the problem up on the whiteboard, then gave him three file cards with numbers and ask him to choose the card with the correct answer on it. He gave the correct answer with the first try. He successfully did another problem the next day, but when I tried to have him do a second problem, it was too confusing.
Finally, I have wanted to mention how progress for the brain injured, and at some level for all of us, is not linear. We were told by an experienced nurse in the early days, "Three steps forward, two steps backward." A friend who is the mother of a child with a brain injury calls it "The Brain Injury Train." I was talking about this with Letha (the OT) and she said she thinks of it as an electrical entrance box where someone pulled out all the wires, stripped off the insulation, and put the bare wires back in. The result is often surprising and unexpected. I have been especially aware that it is not only the patient who goes through this painful recovery, but it is the people who love that person. We rejoice and feel great when progress is relatively uncomplicated, and we are stricken when we encounter one of the terribly steep mountains. For those of you reading this who have loved ones on this train, our prayers are with you and we welcome inquires from you.
October 7, 2009--More good news from Betsy:
I have more good news about Ross. First of all, on Friday night, while lying in bed, he rolled on to his right side. He has never been able to do this because his left side has been so slow to recover. He did this roll completely on his own and lay there for about thirty minutes. Again yesterday, he did the same thing. This is such a huge accomplishment. Also, on two different nights he turned on to his right side and slept there for part of the night. These movements that we don't even think about have been big obstacles for Ross. Yesterday, Jeremiah had Ross reaching out his left arm to hold the rubber ball, then bringing the ball into his chest, holding it with both hands and raising it to face level. He also moved the ball from left to right and back.
Today, even though he was tired after physical therapy, Ross worked on some cognitive material. As the therapist pointed to each letter in the alphabet, Ross said it's name. He said the names of all the letters except Q. When we asked him to print the letters, he started getting mixed up as to which letter was next. I think this was because of fatigue and his vision. When I put on his eye patch he seemed to do better. He did something else new and exciting, he switched from just writing the letters, to writing the outline of the letter. After lunch, we printed the letters on his easel and had him copy them. He not only did it, but most of them were symmetrical. I am so proud of him. Onward and upward.
October 2, 2009--I just received a wonderful update from Betsy:
There are so many good things to tell you about Ross. He has entered a new dimension of cognitive awareness and understanding. Ross had a doctor's appointment yesterday. I told him in the morning that they would be taking his blood pressure using a cuff above his elbow which is different from the one we use at home. I asked him to cooperate with the nurse. Well, hours later, when the nurse said she needed to take his blood pressure, Ross lifted his arm for her. Later, when the doctor walked in, Ross extended his right hand to shake his hand. While we were waiting, I read a Bernstein Bear book to him. There was a picture of the bear children sleeping in their bunk beds. I reminded him of the bunk beds he and Ariel slept in when they were young. Then I said, "We still have them." Ross immediately asked, "Where?"
During physical therapy he has been walking between parallel bars, sliding both hands along the rails. Last week Ross was sitting on the plinth, the therapy bench, and the therapist had to take a call. While she was away, Ross reached out and grabbed the transfer pole, then pulled himself to standing. He proceeded to walk around the pole ( the therapy assistant and I were standing guard) and then sat down. All of this was voluntary without any instructions from us. The other BIG improvement is that he is holding a large ball with both hands, even lifting the ball with both hands. Yesterday he was throwing a small ball, not just grasping and dropping as usual, but throwing it for Jeremiah to catch. His skill is still rudimentary, but awesome to watch. Both the PT and OT have remarked that Ross really likes to learn new things.
He is continuing to read and he has started to say the names of the letters as he put each piece of his alphabet puzzle in place. His vocabulary and syntax are improving. He recently told Jeremiah, "I am scared. I am afraid." Another time, when I left his room, he asked, "Was that my sister who just left?"
Also, he is less explosive and, after blowing up, he quickly laughs at himself. The things that make him angry, rather than confusion, are when one of us undertakes to wipe his mouth. I see this as his feeling that he is being treated as child, and I try to encourage everyone to hold a mirror so he can see himself. When we do, he wipes it himself. The other day I was washing his face and he didn't like it. When he protested, I handed him the cloth, and for the first time he tried to wash his face, rubbing his forehead and the side of his face. Finally his seizures are milder and further apart. Rusty and I believe that the LENS treatments are definitely helping him . We are very pleased with his progress.
September 2, 2009--Ross turns thirty-three on Monday. I received a poignant note from Betsy, a reminder of how much time has passed since Ross's life and that of his entire family was so terribly changed and forever redirected over seven long years ago.
The days slide by as we try to do more for Ross, and as I try to incorporate more into his various therapies and routines. I recently had a poignant dream that symbolized the interweaving of loss and reality that underlie our days. I dreamed I was asleep and I heard Ross say, "Hi Betsy" in the same tone he used to use when saying, "Hi, Mom." I turned to look and saw fifteen year old Ross standing in the doorway. I ran to him and we embraced. We were both crying, and I said, "Ross, I have missed you so much." Ross replied, "I have missed myself ." After a good cry, I went to tell Ross about my dream. His smile was so welcoming, open and sweet that I thought that somehow he has been involved in my dream. After a minute or two of listening to me, he sweetly said, "Give me food." Poof, back to the real world where hope, dreams and discouragement constantly mingle, and Ross wants food.
Ross continues to show great courage, determination and frustration. He is crawling more expertly, similar to a combat crawl in which he is able to use his left leg more. I watched him walk across the room on his knees (the therapist and assistant on the floor with him) the other day, and he was fast. He is also sitting on the therapy bench, reaching out and grabbing the transfer pole with his right hand, and pulling himself to standing. He then, on his own, but with us standing guard if he starts to fall, walks one step at a time around the pole to his wheel chair and sits down.
Today, during PT he was sitting on a therapy ball, with the PT behind him as he bounced, one, two, three - stand, grab the pole. We are doing some concentrated work with Ross standing without the hard orthotics on his feet and constantly we are checking and realigning the left foot so the brain and far away foot are learning together how normal feels.
Ross's left hand is often open when he is asleep. On Sunday, I watched him deliberately open his left hand with fingers extended. It was amazing because he was watching his own hand and was excited when he realized he had opened it. I see this as part of his increasing self awareness, both in speech: "I have two eyes, a nose, one mouth." More attention as he watches his own right hand as it starts to quiver when he is having a small seizure, and an increase in control when he lifts his left foot to have us put on a sock or shoe.
His seizures are definitely briefer and lighter. He has not had a Grand Mal for several weeks. We have noticed that intense cognitive work for much more than a couple of minutes triggers small focal seizures. We have a sense, in consultation with the LENS experts, that his brain is achieving a new balance, where he can do more, but too much intensity is too much stimulation, and then there is small spill over in the brain. It is similar to getting ready for a high altitude backpacking trip. One has to gradually train, adding more strength, stamina and mastery.
On Monday, Ross will celebrate his thirty-third birthday. It is another occasion to remember the wonder and joy of his birth, wonderful stories of his growing up, reworking our expectations and dreams, and looking to the future. Thank you so much for your prayers, love and support. We could not be doing this alone.
August 5, 2009--I called Betsy last night, concerned because I hadn't heard from her in such a long time, and they've been tremendously busy caring for Ross and dealing with the effects of trying to regulate his medication intake. There appears to be a very fine line between theraputic doses and toxic doses of so many of the medications Ross takes, but I'll let Betsy explain what's going on:
Ross continues to improve. He is still reading, line by line. The other day when we were reading a Berenstain Bears book together, he would push my hand out of the way when I happened to be blocking the line he was reading. That day, he not only read some of the words, but also spelled some. His speech has improved and he forms complete sentences more often.He is very articulate when he is angry with us. This happens when we are insisting that he work in therapy, or food isn't coming fast enough, or we are doing something that like dressing, brushing teeth, or shaving that he doesn't want. Sometimes he explodes without provocation; this is not unusual for people with brain injuries. However, there are other possible causes; one is subclinical seizures, another is medication related. We have been continuing the Lamictal (antiseizure drug) withdrawal. I reduced the dose by 25 mg about two and a half weeks ago. This was a reduction of twelve percent. Within days he was having more seizures, both partial and grand mal. After about ten days, I added back half a tablet, and while the seizures were much less, he was terrifically angry. Over the weekend, he also appeared to be hallucinating. His angry outbursts would suddenly just happen, and he spent a lot of time looking down and being grim. In fact, I wasn't help to bring a smile to his face with my silly antics, something that always works. When I mentioned it to the OT on Monday, she said that the only time she had seen hallucinations with brain injury patients, it was related to drugs. So back to the internet and reading the stories of other people who have had difficulty with Lamictal withdrawal. Sure enough, there was a story of a woman who had started tapering from 400 mg a day, and after years of tapering was down to 2.5 mg. When she dropped that last 2.5 mg, she started experiencing tremendous rage and depression. With that information, we took Ross back to the full 100 mg night time dose on Monday night. Amazingly, 90 minutes later, Ross was relaxed, smilingly sweetly and saying, "I love you." He is more relaxed now. This is anecdotal and we will see if this better mood continues. It is time to take Ross to the chiropractor. Thank you so much for your caring about Ross. We are sustained by your love and prayers.
July 2, 2009--Just received a long update from Betsy:
It has been another eventful month, but aside from a minor scare on June 6, the day of the Ross Epic Hill Climb, and a couple of seizures, Ross has been improving on all fronts. On the morning of the sixth, Ross was flushed, had elevated blood pressure, a high respiration rate and his axillary temperature was 100. We agreed that we needed to stay home. I gave him Advil, vitamin C and a homeopathic remedy for virus symptoms. By noon, his temperature was normal and he was feeling better. Again, we can only hypothesize why. It has been a terrible time for hay fever this spring and many of us were congested. Ross has been more congested than usual for two or three weeks, despite all my efforts. It could have been hay fever, but I have another possible explanation. I have been thinking that this fever and the previous fever in April could be related to the healing in his brain. We were told by the LENS practioner that as Ross’s brain equilibrates itself, some symptoms that he once had might briefly reappear. During the first forty-two days post injury, Ross had raging neurofevers, the cause of which was never determined. It is possible that milder artifacts of those fevers are occurring as the neuro suppression in the brain comes off. As I think in this vein, I wonder if his worsening congestion for a while was a result of a lifting of neuro suppression, especially since he is much less congested now.
We also have been able to cut Ross’s antiseizure medication Tegretol back to the pre 2008 dosage because his blood levels had climbed to a toxic level. He has been calmer and less tired since we reduced the Tegretol dosage. We are still tapering the Lamictal and that is going well.
On the motor skills front, Ross is learning to pull himself up at the transfer pole. One day he pulled himself up with the transfer pole while our backs were turned. He is pulling himself up and then walking around the pole to the right and also to the left to his wheel chair. We are standing guard to help him if he needs it, but he is doing at least fifty percent by himself. A week ago, Ross walked down the hall to the kitchen with Letha (OT) on one side and Jeremiah on the other. Letha said it was the first time Ross seemed aware of his core (trunk balance and strength) and his arms.
He is also now able to track the interaction in a group. Last week at the LENS session, the practitioner, Rusty and I were talking and Ross was following our conversation and looking at each one as we spoke. The day before, Ross said, while looking at me, “Yellow, red, blue!” Then he looked around to Letha and the assistant and said, “Blue, blue!” He again looked at me and said, pointing to my shirt, “Yellow, red, blue and white.” I was wearing a blue shirt with yellow and red embroidery over a white shirt. The others were also wearing blue shirts. Letha asked him, “What color are your pants?” Ross looked at his pants and correctly said, “Green!” Afterward, as we walked into the house, he wanted to go into his room. He sat down on his bed, then lay down and pulled his feet up onto the bed. When Letha told him it was time to walk more, Ross said, “I don’t have a body.” I held up a mirror so he could see his body. Then he said, “Currently, I’m a face. That is the only thing.” He did stand and walked some more. It seems that demanding physical exertion drives his verbal advances. We have to be careful though because if he becomes too exhausted, he becomes more confused. Yesterday’s therapy was exhausting and we noticed that he was more confused for the next twenty-four hours.
Last week I bought Ross a couple of 100 word jigsaw puzzles. When I sat with him to work on the first one, I took out the straight edged pieces and set them up so we could put together the border. I was amazed that he was able to spot two pieces that fit, not just once, but five or six times. He also kept explaining, “Mom, Mom” because as we were completing the border, it was obvious we didn’t have all the pieces. Over the next two days, he continued to show that he can see shapes that fit together.
After his LENS session last week, we stopped on the way home to get coffee. We hadn’t had an outing like that in a long time. We went to a small shopping center that has a nice courtyard. We started with a latte (soy because he is lactose intolerant) for Ross. He was very happy to be drinking his coffee, and he wanted ours when he finished his. There was pizza shop, so I ordered pizza. Ross loved it and there were few outbursts. I did have to move him away from the table when he finished so the aide could have his pizza. It was so much fun and I decided to do it more often. While we were there he looked at the newspaper, said “Michael” and then spelled the word. This week, I sat down to read Dr. Seuss’s Are You My Mother? Ross started reading some of the words out loud and was obviously reading each page from left to right. We have continued to read it each day. Yesterday, he read some of the book out loud; some words were clear, others were word salad, and for the others his tongue was moving. Tonight, his reading was stronger and he continued to read each page from left to right. So I have started digging through boxes to find appropriate children’s books for this wonderful new development. Just as I was beginning to despair that Ross, the voracious reader, might never read again, it is happening. God is good! Onward and upward!
June 3, 2009--Today is the 7th anniversary of the day Ross's life and the lives of his family were forever changed. I just received an update from Betsy:
Today, June 3, is the seventh anniversary of that terrible day when Ross's life was changed. We keep hoping that remembering won't hurt as much and that we will forget the details. Rusty and I have been feeling the anniversary blues for the last few weeks. It started earlier this year because Ariel was hit head on by an inattentive driver while she was driving to an early afternoon class on a suburban street on May 11. Miraculously, she walked away from the crash, although her car was totaled. She has been very brave, but it has been hard for her and us. In fact, the day after her accident, I was talking to Rusty on the phone about how Ariel was in pain and very upset. I heard Ross who was sitting behind me make a strange noise. I rushed to him and saw that he was sobbing and it lasted a long time. I remembered how he used to worry about us being okay, so I explained that I knew he was worried about his sister and she was safe. I held him until he was calm.
As we have learned in these last seven years, blessings are always mixed in with the hard issues of life. That Ross was aware of my phone call and Ariel's misfortune is an indication of his increased cognitive functioning, understanding and his increased interaction. As always, I think a description of what Ross says and does provides a good picture. He seems to be accelerating in the area of cognition and language. I see this in his communication skills, his use of language, and his increased memory and insistence on routines. Finally, he is still advancing in walking, rolling to his side, and doing what he is asked . A few weeks ago, Ross asked the Occupational Therapist, "How am I doing?" This was a first, another BIG event. It showed introspection and concern for her opinion.
Today Ross was pedaling, seated in his chair with his feet strapped in the pedals on the bike. Ross pedaled for a while, then stopped. We told him to pedal a little longer. Ross pedaled for a while, then he stopped. Jeremiah asked, "Are you finished." Ross nodded affirmatively. When Jeremiah did not immediately move, Ross said, "feet, feet". Jeremiah asked, "What do you want me to do with your feet?" Ross responded, "Untie my feet!" meaning unstrap my feet from the pedals.
Another time, Ross was trying to communicate what he wanted with gestures. When we didn't understand, Ross said, "You don't have a head!" It was a very symbolic way of saying, "You don't understand."
Last week we were driving by a McDonalds on the way to an appointment. Ross pointed to the sign and said, "Mom!" I asked if he wanted to eat at McDonalds. I then launched into a one sided conversation about how we used to stop somewhere else for hamburgers. We went to our appointment and did not stop at the Mexican Restaurant for enchiladas (something we frequently do). When I pulled up to our house a couple of hours later, Ross became agitated, saying over and over, "Mother, Mother, Mother!" The only explanation I have is that he thought we were going to stop for food, which means he had to remember the earlier conversation or linked Mexican food to going to the chiropractor.
Today, I heard Ross calling me, "Mama, Mama, Mama!" I went to his room and Ross said to me "You are my mother?" He also now expects me to sit beside him to watch the TV show Jeopardy. For example, tonight I was sitting close by, but he again started saying, "Mother, Mother" until I came over to sit next to him.
Last week, Ross started walking, holding the bar with his right hand and Letha's hand with his left hand. It was amazing to watch. However, this week at his next session, he was tired and confused and just couldn't put it together. As he was seated after one extremely difficult trip across the room I decided to show him the pictures I had taken during the previous session. He looked at the pictures in the camera and ,as I pointed out how he had walked the previous week, he started to move each leg as if walking and to move his shoulders in like fashion. It was wonderful to watch because he obviously understood what I was saying and remembered what he had done a few days before.
We have given Ross something new to do and he is enjoying the change of pace. We have a magnetic white board with letters and magnets and, with direction, he places them in order, moving them from one spot to another and using his left hand some of the time. We are thrilled and we think Ross is self aware enough to also be thrilled with his progress.
Finally, the third annual Ross's Epic Hill Climb is this Saturday, June 6. For information and to register, go to http://www.bikemonkey.net .
Onward and upward!
Freelance author David Darlington's 2008 Bicycling story about Ross, Jill Mason, Alan Liu and Danny O'Reilly has been nominated for a National Magazine Award in the category of Public Interest. Together with the feedback reported by Christine Culver, Andy Clarke of the League of American Bicyclists, and the editors of Bicycling, the article is continuing to help shed light on our society's inattention to the vulnerability of cyclists.
April 30, 2009: 44th Annual National Magazine Awards Winners Announced!
Congratulations, David!
Read the article
Beating out articles from Newsweek, Vanity Fair, Mother Jones, and Business Week, Bicycling's "Broken" won the 2009 National Magazine Award for Public Interest in a ceremony at New York's Lincoln Center.
May 1, 2009--It's been awhile since Betsy's last update, so there is a lot of news in this one:
Writing an update has been on my mind for weeks. Unfortunately, my resolve to sit down and write is continually pushed out of the way by day to day routines that cannot be ignored and by the need to nap in order keep going.
As I reported last time, Ross is again making very clear progress.
On Easter Day, we had a houseful of friends with whom we gather for holidays. Our friend Gerri kindly provided the dinner. Rusty wanted Ross to walk down the hall to the dinner table. With Rusty on one side, and one of our aides on the other, Ross had us in tears as he, standing tall, moved first one foot and then the other, beautifully transferring his weight with each step. I had decided it was safer to have him sit in his wheelchair because if he became combative (thanks to his brain injuries), there would be no chance of tipping his chair over. As usual, Ross loved the food and ate it almost as quickly as I could cut it and put it on his plate.
Everyone was amazed at how much food he ate. Finally, when he had eaten dessert, he became agitated because I wouldn't give him more food. As I wheeled him away from the table, I was glad he was already in his wheelchair. After we put him in bed, he was a happy guy with a full tummy and a dreamy look on his face.
Ross has continued to progress in motor skills: he pulls himself to standing using the transfer pole, is walking with assistance, and is beginning to walk with a walking stick. His cognitive progress has accelerated. He continues putting puzzles together. Two weeks ago when I gave him an alphabet puzzle, he amazed us by completing it right away. When he isn't interested in working the puzzle at his table, but instead is watching me at work in the kitchen, we encourage him to work by putting one of the puzzle pieces in the wrong spot. He will then correct the placement and work the puzzle. Some of the pieces look the same on both ends (for example, S), but will only fit if the smaller side is on top. I have discovered that I only have to say, "Ross, I think you need to turn it 180 degrees" and rotate my hand in the air. Ross immediately corrects the placement by rotating the puzzle piece. Yesterday, before dinner he worked all seven of his wooden object puzzles (excluding the alphabet one) in fifteen minutes while he waited for dinner.
We had an interruption about ten days ago. Ross was doing well and had a great evening laughing and cracking jokes. The next morning he slept until nine, and then had two large seizures two and a half hours apart. When I took his underarm temperature, it was 101.8. I knew the seizures could be because of the fever, but why the fever? He was definitely not feeling well and Rusty and I, after conferring with the neurologist, decided to take him to the Emergency Room. The doctor ordered tests and did a CT scan of Ross's head. We were devastated when the doctor said, "It looks like either fluid on the brain or an infection." They then did an MRI, but had to keep sedating Ross to keep him still enough for the procedure. Rusty, Ariel and I were becoming really worried. The doctor wanted to transfer Ross to UCSF, but UC did not have a bed available. In the meantime, we were also waiting for a bed at the hospital in Santa Rosa. Finally, at 2:30 A.M., twelve hours after our arrival, Ross was taken to a room adjacent to the ICU where he spent forty-four days in 2002. We were relieved to finally have a room.
Rusty came home to get some sleep and I sat in a chair by Ross's bed through the night. I am grateful that I was able to be with him the whole time, both in Santa Rosa and San Francisco. He is so easily confused and agitated that he needs one of us to mediate for him and to calm him by our explanations and presence. Ross was started on IV antibiotics in Santa Rosa. Finally, on Thursday night, two days after going to the ER, Ross was transferred to UCSF. When we arrived on the neuro floor around midnight, a resident came to see us. He was familiar with Ross and promptly went off to compare the scans we brought with the ones on file. He returned half an hour later with the wonderful news, "There is no change." What the radiologist in Santa Rosa saw was scarring from the previous infection and the shadow of the prosthetic bone flap. In addition, he said, "Ross is looking a hundred times better than he did last year. He said they would keep him a while for observation, but much to our relief, at 6 P.M., we were told that Ross's neurosurgeon said Ross's cultures were clear and he could go home. We were very happy as we brought our tired guy home. I don't think anyone was happier to be "going home" than Ross. In fact, he had become petulant on Wednesday when I told him we could not yet go home. He had turned his head, refusing to look at us, and pouted.
I was impressed the whole time with Ross's ability to control his fear and alarm as I explained what was happening and coached him. For example, "Ross, this lady is going to take a blood sample. Show her how well you keep your hand still and watch." Ross would sit still and watch intently. He even sat still for a chest x-ray.
One last story! Ross surprised us all when we went to his LENS treatment yesterday. He sat quietly as the practioners attached the sensors to his ears and to different spots on his head. She made a point of telling him what she was doing and, before doing anything, she waited until he nodded or made an indication that he was ready. He did not become scared and he even sat through the whole session, about twenty minutes, without having any food to distract him. As we say, this was BIG. Another big event occurred a few minutes ago. Jeremiah put on his jacket, and Ross said to him, "Father, you go home now?" As I sit here typing, I can hear Ross talking in complete sentences to the television.
So, onward and upward! Life is not a bed of roses, but it is very good.
March 23, 2009--Betsy finally had a chance to send me an update--I sometimes wonder when she finds time to breathe!
Well, few things are easy. Just as I was becoming confident that tapering the antiseizure drug Lamictal was not going to be as hard as I feared, Ross did have a seizure. It happened when I reduced the daily dosage by 50mg six days after the previous reduction. The next day brought several partial seizures followed by a grand mal that had two phases. The next two days Ross had head aches, nausea and felt terrible. I determined this by asking Ross questions and he answered with head movements. His neurologist agreed to increasing the dosage of herbs Ross takes to reduce glutamate uptake in the brain (one of the biochemical mechanisms in seizures). This has helped, but I also discovered (another benefit of the internet) that Lamictal is available in 25mg doses, which allows us to taper by 25mg instead of 50mg. This is much easier on Ross, even though we are seeing a small partial seizure within a day of each decrease. Because of this, Ross is staying on each level for two weeks. It will take longer for Ross to be finished with Lamictal, but it is easier for him.
The good news is that Ross's walking and standing is getting better. He is pulling himself to standing by learning to grab the pole with his left hand (he regularly grabs with his right hand). He is crawling and moving his left leg from the hip. All the great work his physical therapist is doing in stretching his legs and hips are increasing his strength and agility. She also has him standing on his shoulders (with lots of support), which is helping to drive the neuronal connections in his brain. He is walking with support, lifting his left leg and putting it forward almost as fluidly as the right foot. He is learning to walk with a walking stick and the support of someone on his left.
In bed, he is rolling with ease when he is in bed, and this morning he turned to his side, almost onto his stomach. This is exciting as progress, but also it is a way he can help himself to be more comfortable or even reduce nasal congestion. Of course, Ross's progress means we need to be more careful in protecting him from falls while facilitating more independence. Once more, I am grateful that we are able to have someone with him around the clock.
The difference between Ross in a confused state and when he is alert is more obvious now. He is communicating more and we have two way conversations. The chiropractic neurologist has told us to expect more outbursts as he gets better. The occupational therapist has told us that the first thing Ross will say may be what is most accessible. I think an example of this is that he will laugh heartily and say, "I hate you!" At other times, he seems to be playing around with linking words. We still hear "I love you!" frequently. Yesterday, he asked me if he could be my husband. There are times when he is laughing, but his eyes are filled with tears. I think that he probably is crying at these times.
His movements are quicker and more precise. He did the first Magneato construction by himself last week. When Jeremiah tried to add a piece, Ross pushed Jeremiah's hand away.
Ross is still receiving LENS treatments. We are pleased with his progress and clearly Ross is improving neurologically. It seems that Ross is almost back to baseline (before the surgeries of 2008). He has not been spelling as he did before, but he is beginning to write again. The LENS therapist has said that if he was spelling before last year, it is still there and is accessible. He also has started to talk about pain, and is able to tell us when he is in pain. Sometimes it is indirect as in this exchange. Ross said to Jeremiah, "I love my head". Jeremiah said, "I love my head too; what is wrong with your head?" Ross replied, "Pain, pain!"
Oh, one last change in our routine. We discovered that Ross was less congested when we ran out of the nutritional gummies (they had a small amount of sugar). So, no more gummies, but after trying different combinations, I am now making little treats that are soft, small and easily picked up by Ross of dates, coconut and almonds. Now with the gummies (as we call them), just about everything I give Ross is home made. I spend a lot of time in the kitchen, but I like knowing just what he is eating.
As Ross is progressing, I feel that our sails are filled with wind again and this will be a better year. Ross is working hard, he is much calmer, and he is happier. And when Ross is doing well, our family is too.
February 14, 2009--I was getting worried and asked Betsy for an update--they've been BUSY!
No, we did not go on vacation. We are busier with extra appointments and more to do. Ross continues to make great progress, both in motor skills and cognitive functioning. There are two good things to report.
Ross's seizure activity has calmed in the last few weeks as we have seen fewer absence and partial seizures. He has had only four significant events during 2009.
On January 16, he had a grand mal that lasted about three minutes, but was less intense than usual. Eight days later, he had another grand mal, but it was very mild. Eight days after that, he had a ten minute absence seizure. It started as usual with Ross staring off to the right, but it didn't progress beyond that. Eight days later, this week, he had a couple of absence seizures. Neurofeedback therapists believe that sometimes aggressive outbursts in the TBI patient are really a form of seizures. Our experience in the last six weeks is that Ross is calmer and experiencing fewer observable seizures and we believe the LENS is partially the reason.
In addition, he is progressing in walking, lifting each foot in turn. Last week, he was practicing standing against the wall and lifting his right foot while standing on his left foot. He also surprised us last week when we were asking him to scoot his bottom back in the wheelchair; he suddenly stood up all my himself. It was exciting to see and a warning that we have to be careful to protect him from falls. He also has started rolling on to his side while sleeping.
This week he has been crawling on the mat and just stood on his knees independently for almost a minute. He then walked on his knees, pulling his left knee forward on his own. Yesterday, we mixed the pieces of two wooden puzzles around the bases. Ross, by looking at the shapes of the individual pieces, determined in which space to put each piece and he did it all by himself. I am including a picture of the puzzles before he put them together.
On Wednesday, Ross had a routine appointment with his neurologist. I have been concerned about one of Ross's antiseizure medications that he started in the summer of 2007. The doctor had hoped the drug, Lamictal, might replace the Tegretol which he also takes. However, even though Ross was taking the maximum dose, his blood levels were never therapeutic. One of the serious side effects is a red rash and over the last four months I have noticed some off and on iffy looking rashes.I had also started to wonder if the staph infection had been potentiated by Lamictal. The doctor took my concerns seriously, examined Ross, and checked the internet where he found a blog on which the writer said she had developed staph after taking Lamictal for a couple of months. So, we are tapering Ross off the Lamictal. I am concerned about the side effects of withdrawal, but Rusty and I believe that it is the right thing to do. Once again, we are thankful that Ross is under the care of a thoughtful doctor who listens to our concerns.
For the last two days, Ross has been happy, calm and more alert. Onward and upward!
January 19, 2009--a terrific update from Betsy:
Ross is doing very well. Despite his cold lasting for weeks, his speech is blooming again. On New Years Eve, while I was trying to use the nasal spray for his nose (sometimes he wants it and other times he doesn't), he became very angry with me. Rusty sharply told him to be nicer to me. When Ross calmed down, he said, "Mother, don't worry. Nothing happened! Father, nothing happened." That level of analyzing and speaking is a new development. Later that day, he started singing, "Boom, boom!"
The next day, he was telling us, "Don't hurt my back! Don't, I'm serious!" We were not doing anything that hurt, but we think he is newly aware of pain he didn't feel before, and he was warning us to be careful. Later he asked me, "Pour me some (coffee)." Then he said, "You just go while I eat my food."
Another day, while trying to convince Jeremiah of something he said,"Father, why don't you trust me? I am the king! Obey me!" A few days later, after his physical therapy session, he looked at the therapist's tee shirt with interest. I asked him if he liked it and he said, "R O X Y", spelling the logo on the shirt. He also said, after scooting himself back in his wheelchair, "I am awesome at picking up my bottom!"
He went to the dentist for the first time in over a year a week ago. We kept having to postpone his appointments because of the various surgeries last year. A dental visit involves sedation, the oral surgeon, the dentist, the hygienist and the surgeon's assistants. Ross surprised me in that he sweetly accepted having no food before the 8:30 AM appointment. He was very cooperative and calm through the whole process of x-rays, being anesthetized, and waking up. He had a speedier recovery than ever before. The only negative of the experience is the deep staining and wear on the enamel that both the hygienist and dentist think is related to the anti seizure medications.
He was very cooperative at his LENS appointment on the seventh, but a week later, seemed to be wary of anyone but Jeremiah touching him. When the therapist compared the brain maps of the two weeks, it showed that there is more activity now. Some areas are showing higher frequency. It is to be expected that he may be more frightened.
Letha, the OT, has been on vacation. Today, she started the session with Ross standing by pulling himself up using the pole. He than leaned against the wall, turning and walking sideways. Afterwards, he walked across the therapy room and back on his knees, moving very quickly. When it was time to do some distance walking, he didn't want to walk so he started to sit down. Letha and Jeremiah let him do what he wanted, lie down on the floor while they protected his head. Letha asked him if he wanted to stay there, or walk to the chair. After about five minutes, he indicated he wanted to get up and he walked to a chair just inside the house. After resting, they had him walking again down the hall to his recliner in the living room. It was awesome to watch because he was lifting each foot and bringing it forward. He only needed help with the left foot for two steps. Letha said it was the best session since before the January surgery last year. When she asked Ross, "What do you think I should put in my notes that you did best today? Should I say your walking was best?" Ross thought for a while, and then he said, "All of it!"
Onward and upward!
December 30, 2008--just received a note from Betsy:
Once again I apologize for how long it has been since the last update. It has been a busy few weeks and we all have been sick for the last week. We went to a Christmas party on Sunday, the 21st. When Ross's friend Jon greeted him, Ross said, "Who are you?" While that response may seem disappointing, I think it really indicates that Ross is now able to speak up, rather than being evidence of regression. Ross enjoyed watching the many little children and, of course, he loved the food. However, after an hour and a half, I could see he was becoming overwhelmed and we left. As we drove back in the dark and rain, Ross watched the traffic intently.
A few nights before, in the middle of the night, Jeremiah heard Ross saying over and over, "Woman, I am not going to die! I will live. I will live." All who have heard this story believe that this goes back to those early days when he was in a coma and we were praying that he would survive. There are many stories of those who remember what people were saying while they were in a coma. I believe that one day Ross will tell us what he remembers.
Since Wednesday, Ross has been sick with a bad cold. He has had a low fever and has been miserable with pain and congestion. He starts out feeling miserable in the morning and then feels a little better as the day progresses. He spent most of today in bed, but when he walked (with help) from his bed to his chair, he started with his left foot and walked bilaterally to the chair, turning completely before sitting. Usually he turns halfway and sprawls on the seat.
Ross has not had a LENS treatment for almost two weeks; we canceled last week because of his cold. I had asked the practitioner what the mapping of his brain showed. What she reported is consistent with a TBI. The dominant frequency is very low, as in the frequency of sleep, but were high amplitude, showing irritation of the brain. At the last session, she briefly gave him stimulation (one second) at one site with the goal of calming his irritated brain. It would appear that Ross's improved cognition and communication is related to the treatment. I am encouraged by the possibility that as the treatments continue, Ross's dominant brain waves will be more normal. Interestingly, the few seizures Ross had had in the last month have been milder, another possible effect of the LENS treatment, as well as a result of the lower ICP made possible by the shunt repair two and a half months ago.
The last year has been very hard for Ross and I have recently realized that we didn't fully understand how invasive the January and April surgeries were. Rusty and I are encouraged that he is regaining speech and we are looking forward to the coming year. Thank you so much for your love and support. Happy New Year to all of you!
December 6, 2008--another great update from Betsy:
Baby, Baby, Baby! Ross woke up this morning with those very clear words. What is significant to me about this is that he and his friend Jon used to have a lot of fun with saying, “Baby, baby”, “Just appreciating” and other short expressions. The tone or context was the funniest part. This morning, Ross said “Baby, baby” over and over and laughing while he said it. Then, “Baby, baby, I need food. I am the king and I need food! You are my mother; I need food! I am a man; I need food!” All of this was spoken softly and with humor, with none of the anger and fear with which we are familiar. He even counted 1, 2, 3, 4, and 5. As he ate his breakfast, his chewing was more controlled and thorough. Yesterday, when he was pedaling, it was not the slow, pedal, stop, pedal that we have seen lately. He was spinning like the old days of training. And for the last twenty-four hours we have seen more smiles and chuckles than in a long time. During his therapy session yesterday, he made significant advances in walking on his knees, standing with his weight over his feet and almost no signs of severe confusion.
So what is different? Well, all of us are thinking it is the result of the LENS neuro feedback session he had on Wednesday. This was the third session (the first two were in September before the shunt repair). We noticed a change then, but the therapist wanted to wait until Ross's difficulty with the shunt had passed. We think that the treatment has helped to calm his brain waves and that results in him being more comfortable and this better functioning. I don't want to make the mistake of oversimplification, but we are definitely looking forward to more sessions for Ross. In the meantime, there is a review of a book about the history of LENS that explains the technique somewhat.
The link is http://www.townsendletter.com/April2008/ltr_white0408.htm . We will keep you updated about Ross's progress. In the meantime, we are grateful that Ross is feeling better and we are optimistic that these treatments will be beneficial. I am also wondering if Ross is going to be treating us again with his wonderful sense of humor and wordplay. Thank you for your love and prayers.
November 21, 2008--a terrific update from Betsy:
As usual, we have been busy. Ross finished the month long regimen of antibiotics on November 4. Thankfully, he didn’t have digestive upsets this time, probably because of the stronger digestive enzymes that he has been taking. When Ross finished the antibiotics, he was able to again take the herbal supplements that have helped his cognitive progress and, hopefully, reduce seizures. Ross is still making great advances in motor skill development, lifting his left foot and moving it forward, almost as well as he moves his right foot. He is rolling around in his sleep, lying on his side. He is also sleeping through the night, possibly because moving in his sleep allows him to be more comfortable. His speech is improving and a few days ago, when he saw a bus while watching television, he said, “Bus”.
When he is driving his wheelchair around in the driveway, he now likes to stop at the car and he communicates that he wants to sit in the car. A couple of days ago, he got a short ride in the passenger seat of Jeremiah’s car. Watching, as he and Jeremiah drove off, reduced me to tears. It was so normal, but poignant because he used to love driving himself. We are so proud of Ross; he works so hard to regain his life. We can see that he is often confused and overwhelmed, which is scary for him.
Yesterday, he had a number of breakthroughs in therapy. For the first time, he stood with his weight completely over his feet, his left hand holding the pole, elbow bent, while he leaned forward to take a gummy off the pole with his right hand. The therapist kept saying, “This is what we have been working for and today he is doing it”. While we were elated with that, Ross and Rusty and I were really jazzed when we got him on the exercise bike. Up until now, he has only pedaled in the recumbent position, seated in his wheelchair. It took three people to get him on the bike, but as you can see in the picture, he briefly settled in to it, as if the memory of all those hours on the bike was evoked. Notice his hands and how they are bilaterally wrapped around the handle bars. It was hard for him, it was uncomfortable because he had not been on a bike for six and a half years, and he was frightened. But afterward, he was ecstatic and he kept laughing and talking. He didn’t even clamor for food as he waited for lunch.
Then, at dinner time, he had a grand mal seizure, eleven days after the last one, and only the second since being released from UC. What is common to both seizures is that they were preceded by exceptionally successful therapy sessions with wonderful breakthroughs. He slept soundly, and this morning is laughing and talking. For now, it seems that seizures are again part of Ross’s life and that his brain is very sensitive to fatigue and excitement. I suspect that he is becoming acclimated to the new lower ICP (Intracranial pressure) since the shunt modification. I am learning more about the chemical part of seizure activity, and over time will be adding in some more nutrients that are supposed to help. Please continue to pray for Ross. We are frequently reminded that Ross is a trailblazer and has come so much further than the initial prognosis. We are blessed and we are so happy to report that his therapists do not see a ceiling on his progress. Thank you for your love and support for our son.
We are gearing up for our annual Thanksgiving celebration. Thanksgiving has always been Ross’s favorite holiday, and this year, he will sit at the table in a dining room chair, not his wheelchair. Happy Thanksgiving from the Dillons!
October 30, 2008--an update and photo from Betsy:
While he is waking up with headaches and is not sleeping as much at night, Ross is having a good therapy week. He still has very definite ideas about what to do. On Monday, he wanted to walk outside, so our wonderful OT agreed. When Ross, with Letha and Jeremiah's support, reached our adapted van, he wanted to get in (without the usual wheelchair) and sit on the back seat. It was hard work and took three of us helping him. He put his right knee on the floor inside the van, then the second one. He was then able to pull himself up on the seat and turn to sit. He worked so hard that he was shaking, but he was also so excited that he turned to Letha, conveying pride in his accomplishment. (I am enclosing a picture I took.) He wanted us to drive, so we took a little ride, about a tenth of a mile. He was very happy. Getting out of the car was easier and he walked back into the house to sit on a dining room chair.
Ross has one more week of antibiotics; then he can resume taking the herbal products that have been so helpful, and hopefully his headaches will diminish. He is also using his left arm more and more. My dream is that he will be able to walk with a walker in 2009. That is a task that requires using his left arm for support and consistent movement of his left foot.
One last example of Ross's coping skills. Yesterday, I gave him a couple of rice crackers that I had broken into pieces. Ross can pick them up with his fingers, but he decided to wet his finger in his mouth, put the wet finger on the cracker and then put the cracker in his mouth. He used that method to consume all of the pieces. Another reminder that so much of what Ross knew and could do is there, but still disorganized.
October 27, 2008 I just received a lengthy update from Betsy:
It does not seem that it has been two weeks since we brought Ross home from his last hospital stay. Not only have we been busy checking discharge instructions, following through on bleach baths twice a week because of a staph colonization acquired during one of his hospital stays, making weekly lab visits because one of the antibiotics for the staph infection interferes with the blood levels of his seizure medication, which in turn messes with his electrolyte levels, and having the sutures removed. Even though we have awesome doctors and a good local lab, I have to follow-up to make sure every loose end is tied. Rusty and I have been exhausted and several times a day I have said to myself, “I am too tired.”
I am sure part of the fatigue is emotional. This has been a very hard year for Ross and for us. The few weeks before this last surgery were terrible because there seemed to be nothing we could do but wait for the shunt repair and we didn’t know how much worse it would get while we waited. When he is having a setback, I tend to panic for a while.
Ross’s recovery is amazing and wonderful and he has come so much further than any of the experts believed could happen. He was doing so well a year ago and then he started to lose part of what he had gained in cognitive function, speech, drawing and writing, while at the same time moving forward in gross motor skills. There have been many times in the last two months when my belief that Ross is slowly getting better and better has been challenged. It is interesting that when strangers see him, he looks so healthy and alert that it is hard for them to believe that he still needs someone to do almost everything for him. But then we always make assumptions on the basis of what we see. I had a brief moment with another mother who was in the elevator with her son. He was about eight and in a wheel chair. He looked healthy and happy, but I noticed that as she stood behind him, she gently held his hand with which he was making hitting motions. I realized instantly that he had a brain injury and I said, “My son does that. He has a brain injury.” She smiled and nodded as they exited. That encounter made an impression on me and I told a couple of people about it. I think the recognition that we both deal with the same problem the same way touched me.
However, and this is the good news! Ross is doing much better-he is talking more, his drawing is controlled and he is writing. One morning he woke up writing in space with his finger. Jeremiah gave him his easel and paper and he wrote eight pages of cursive in mostly straight lines, and line upon line. We were able to identify a few words. He is obviously thinking and strategizing. He can unscrew the gummy bear bottle himself and dump out the bears. He put some nesting containers back together yesterday. He is eager to have us put on his shoes and to walk (with help). Also, while he was in the hospital and now, he sits carefully and watches the technician draw blood from his left hand. I used to have to hold his right hand, but now he becomes annoyed if I put my hand on his right arm.
He still has a temper and tells us exactly what he thinks of whatever we are doing-usually when we are not producing food fast enough or when we remove his plate from the table until he has cleared his mouth. (He likes to take very big bites.) Tonight, I pulled his chair away from the table because he was mad that we were trying to get him to slow down. He was angrily waving his spoon around. I told him he had to sit there until he was ready to stop trying to hit. He was able to pull himself together and smile. The rest of the meal was smoother. Last weekend, he was very agitated so we brought in the blow up plastic dummy made for hitting and kicking. He was reluctant at first, but the he kicked angrily for about five minutes and then he was tired of it and much calmer. I constantly have to remember that we are raising our son a second time, except now he is much larger.
As I was brushing his teeth the other night, it became a hassle. Ross was angry at me for persisting, but when I had finished, he laughed and said, “I love you.” He still enjoys watching children. We always see children walking home from school when we go the chiropractor, and Ross now watches them. Occasionally, one will wave to him and that is a treat. We are looking forward to seeing his friends, Jon and Mel, and their children at Christmas. He loves looking at the pictures of the children.
So, you see that despite my rough moments about Ross, with the shunt repair accomplished, he is getting back to base line. His motor skills are progressing. For example, last night he turned on to his left side for a while in his sleep. While this is something we do without thinking, it is a big deal for Ross.
Thank you for your love and prayers. We could not do this alone.
October 11, 2008: I finally heard from Betsy today--they didn't get home until 9:00 last night, so it was a long day for everyone, but Ross was really glad to be home and slept through the night. Betsy said that he hadn't slept at all Thursday night, but she sat and talked with him much of the night and it was very special--she said it was like nothing that's happened since he was injured, and it was obvious that Ross was not only connecting, but following and participating in the conversation. Friday morning he was feeding himself breakfast, something that really surprised the nurses.
He's got a six inch crescent shaped incision across his head, but it's through the skin only. Doctors did not have to go inside his skull, so this should heal quickly. He's on oral antibiotics for awhile, and Betsy said his sodium levels are still off, but that's most likely because of the way his body is metabolizing the Tegritol.
Ross had to have a lot of blood drawn--four times a day for tests--and he often will fight the process, but Betsy said he was very calm and held still for the phlebotomist and actually watched the process.
It sounds as if adjusting the shunt pressure has made a huge difference. I'm looking forward to Betsy's future updates to see how Ross is progressing now that the pressure has been reduced. Thank you all so much for your prayers and healing thoughts. Your generosity and kindness has made such a difference in Ross's continuing recovery.
October 9, 2008 8:30 PM I just called Betsy and she said that Ross is doing so well that they're convinced the shunt has probably been malfunctioning for months if not years. He'll be going home tomorrow afternoon with a couple of oral antibiotics to take for the staph infection, but everything looks great. Thank you all so much for your prayers and healing thoughts. Your good wishes mean so much to Ross and his family.
October 8, 2008 8:30 PM I just got a call from Betsy, still at the hospital with Ross:
Ross is feeling much, much better tonight, according to his mom. She said the CT scan showed that the ventricle in Ross's brain where the shunt has been placed is much reduced in size since the surgery. Since the shunt has probably been stuck for quite some time, Betsy said it's possible the pressure has been much higher than anyone realized, possibly for many months. She said Ross already seems more comfortable, he's very alert and responsive. A small infection on his leg tested positive for staph, so he's receiving antibiotics to prevent further infection. It looks like they'll be going home on Friday, October 10. Six years ago to the day, Ross was moved from Marin General to Herrick Hospital where he began therapy following his injury, and Betsy's looking at Friday's date as a good sign--it's time to get him back home.
Thank you all so much for your prayers for Ross and his family. You are an amazing source of strength for everyone.
October 7, 2008 9:00 PM: Betsy called earlier but I'm just now able to update:
Betsy finally spoke with the neurosurgeon. He said Ross's CT scan looks good, though he may have to turn the shunt down even more. He seemed to think the seizures were due to Ross's sensitivity to sedation and the changes in the shunt pressure. He'll need to take antibiotics for the infection on his head and they're going to keep him in the hospital until Friday to make sure all is well before sending him home. I forgot to mention earlier that Ross is at UCSF, Moffet Hospital. Many thanks to everyone for your prayers and healing thoughts. Your kindness means so much to the entire Dillon family, but especially to Ross.
October 7, 2008 2:30 PM: Betsy just called me with an update:
Ross was feeling okay last night, though he didn't sleep well at all. Then, this morning, he had three seizures. One was a "grand mal" that lasted ten minutes. Betsy said they're attributing the seizures to the change in shunt pressure. It was stuck for quite some time before surgery and the pressure was much too high. However, even during the seizures, Ross's pupils were the same size, something they've not seen for quite some time. Also, his gaze is steady and normal with both eyes tracking. They're still waiting to hear from the dermatologist about the infection on his scalp and will definitely be in the hospital another night.
October 6, 2008--6:23 PM: Just heard from Betsy:
Ross came through the surgery fine and woke up hungry. Betsy still hasn't talked to the neurosurgeon so she hasn't gotten a report on the condition of the shunt. She did say Ross has another spot on his scalp that they wanted a dermatologist to take a look at, which means he'll probably be one more day in the hospital than previously expected. Hopefully he'll be going home by Wednesday. I'll add more as I hear from Betsy.
October 6, 2008--Ross has his surgery today. Betsy wrote:
This is the day and Ross is sweetly awake and he seems to understand that we are going back to the hospital today. We are up really early to give him his essential meds and now maybe we can nap before getting ready for the day. Please pray for us. We have been anticipating having the valve replaced on Ross’s shunt for months and now it is actually going to happen. I will call after Ross is out of post op this afternoon. Bless you all who are Ross’s cheering section.
September 29, 2008--I just received an update from Betsy--now I understand why I haven't heard from her in so long (and I was out of state, so didn't contact her while we were away):
Ross’s month has been a roller coaster ride. The month started with Ross having a scary grand mal seizure in his sleep at 3:30A.M. This was the first time he had a seizure in the middle of the night. We are grateful that one of us is always sleeping in his room at night. This seizure was part of a troubling pattern we have been watching all year of increasingly more seizures, though less than the two months before the January surgery; more confusion and less speech. As you may remember, the neurosurgeon and we have suspected that the valve on Ross’s ventricle shunt is stuck. The doctor wanted to see if the size of the ventricles was increasing before putting Ross through another surgery. The first post surgery CT in June was inconclusive. The second CT scan on September 8 showed an increase in size. We were not surprised because we have noticed that Ross’s confusion and explosiveness is increasing, and in the last two weeks his vision was worse, the left eye drifting and the left pupil again larger than the right. His hands have become tighter and clinched and he is frequently in pain. We went back to UCSF last Tuesday and they again tried to reset the shunt without success. Ross was very agitated and frightened, but I was proud of how much he tried to cooperate.
The surgery to replace the shunt valve is scheduled for Monday. If there are no complications, he will only be there overnight. On last Friday, we were so concerned about Ross’s deteriorating condition that I called UC to see if they could do the procedure this week. We are waiting to see if they can. I also called our wonderful neurologist to ask if the increased intracranial pressure (ICP) could cause permanent damage to Ross’s brain. His answer was that probably it would take longer than a few months to cause irreversible damage. I also asked if there was anything we could do to provide some comfort for Ross while we wait. He suggested an herb that had been the topic of a lecture he had just presented, Huperzine. I bought a bottle and we started giving it to Ross on Friday night. On Sunday, he was feeling better and we didn’t see any indications of the Absence Seizures he had been having. Today he was even better; Letha, the OT said that it was his best session in a long time.
He started with walking on his knees with only bearing down through his arms to hold their (Letha and assistant) hands; visualize walking with a walker. He walked very fast, and moved both the left leg and the right without help. Later he walked outside (standing), again with support on both sides. He is now taking big steps with his right foot and independent sliding through steps with the left. I brought his old manual chair out for him to sit in. When he was seated, he started to travel using his feet to move him along. He would bring his right foot forward to more the chair, then put the right foot back next to the left foot and bring both feet forward together, and then repeat the process. When he came inside, he moved to the table, reached out and grabbed the edge in order to pull himself forward. When he encountered a table leg, he used his right foot to move the left foot to the left of the table leg, and then put his right foot on the other side and moved his chair to the edge of the table. Once again, he is showing us that he is thinking and planning, even though he can not yet talk about it.
He is definitely feeling better; if we have to wait until next week for the surgery, at least he is more comfortable and less vulnerable to another Grand Mal. It is definitely scary when I can’t remember how many seizures he has had in ten days without checking my notes. However, I am reminded of my mother saying when I was a girl, “It is always darkest before the dawn.” Thank you for your prayers.
August 31, 2008--I just heard from Betsy:
Well, something has clicked for Ross. I don’t know if it is because three months post surgery is an important interval, or the new herbal supplement the neurologist prescribed is kicking in, or if it is the extra niacinamide I started giving him after learning that it helps with balance and is an excellent antioxidant. Or then, maybe it is all of them or none of the above. Ross is much happier: he smiles more, he is laughing again, he is moving his shoulders in that wonderful way he has, alternately lifting each shoulder as he smiles and rolls his head. He is also talking again. Twice in the last week, he has said, “I am happy.” He also, told Rusty and me at separate times, “I love you.” This afternoon, he was happily eating his afternoon snack and smiling. He said, “I am always hungry! “ And he also asked me, “Are you my mother?” We haven’t heard this level of speech since before the last surgery. As I read over the entries from last year, I realize his speech was so much more advanced before the first surgery in January and we are thrilled to see the positive changes..
He is also continuing to kick the ball with his left foot. Last week, he kicked forty times in one sequence. Two days ago, we had him kicking. As I was watching him, I was aware of the effort required to send the message to his left foot. We could see him trying to remember how to do it. It is so easy to forget how hard it is for him to do things that we take for granted. Later, I tried a cognitive exercise with him. It involved identifying matching two of four letters on a page. It took a while, but he finally did it. When I gave him another page, he was distracted and looked at the page without comprehension. I didn’t give up, but walked away for a while and then returned, quietly asking him again. After ten or fifteen minutes, he finally accomplished it and, for me it was a demonstration of something I have been learning. In watching him, it seemed that he was so agitated that he couldn’t process the information in front of him. As we calmly spoke to him, walked away, came back, gently encouraging without pushing, he was able to calm down and look at the letters.
Rusty and I have been reading about neurofeedback and its use in helping people with brain injuries. The injured brain, at least from this perspective, has brain waves that are not normal. For example, low frequency, high amplitude (voltage) brain waves can destabilize the brain and trigger a seizure. One writer has likened this to the conductor of a symphony being incapacitated and the chaotic music that ensues. We became interested in neurofeedback after two families told us that their brain injured sons have been helped by neurotherapy. If anyone is interested, a good introduction is A Symphony in theBrain by Jim Robbins. We are exploring the possibility of this therapy for Ross. Certainly, just reading about it is helping us to understand day to day life with Ross.
We had an interesting experience at the chiropractors this week. A man introduced himself to Ross. I told him Ross’s name and started to tell him how Ross was injured. Ross quickly turned to me and said, “Oh, Mom, don’t tell that story now.” Times like this encourage me.
Ross’s thirty-second birthday is a week away. We will celebrate with a family dinner and birthday cake. We hope to be able to post a video/slide show on the internet soon. We will let you know when it is up. Thank you for your prayers and support. Onward and upward!
August 11, 2008--a note from Betsy:
Just a quick note since it has been a while. As usual, we have been extremely busy. I wrote in my log on July 31 that Ross has been so tired, particularly after PT on Tuesday and Wednesday. His therapists were pleased with his progress, but his fatigue was scary. A cognitive training program that I have been interested in was on sale and I took advantage of the lower price and ordered it. That evening, I sat with Ross at the computer to show him a video of another young man with a TBI who has made great progress and used the program. Ross sat with his head down, not looking. As the video played, I talked to him and said he could learn to do these things. He shook his head for “No!” I kept talking, and he finally looked up and started watching. He even smiled as I talked about him doing it and then lifted his shoulders alternately, something he does to show enthusiasm.
In talking to Rusty, we realized that with the stress of the last six months, we mainly stay home and do lots of therapy. He is doing extremely well with gross motor skills but he had regressed in cognitive work. Realizing that he was bored and resigned to his fate, I decided to add in more fun. The next day we had lunch at Murphy’s Irish Pub, where Ross had worked for a while. He had a wonderful time, eating, gesturing and calling out to other people.
Now, two weeks later, he is doing much better, except for the first grand mal in almost two months last Tuesday. However, he is smiling, drawing intricate pictures again, writing and enjoying the Olympics.
July 27, 2008 A note from Betsy:
The last two weeks have been much better for Ross. His digestive system seems to have calmed down. Since the lab tests were normal, I think that it is because the new enzyme regime is helping. I need to spend some time determining what the next step will be. There is a product that is specifically designed for reduction of mucus (i.e. nasal congestion), but I want to go slowly. Ross is less volatile and he actually seems to look forward to therapy (exercise). The OT started having him walking on his knees between the parallel bars two weeks ago. It is exciting to watch as Ross moves first his right knee forward and then the left with his hand on the bar. Sometimes we have to provide just a little lift on the left shoe to overcome the friction, but more and more he does it all. He started out walking one length, about six feet. Yesterday, he did five lengths.
Ross is also talking more often and, of course, it is frequently about food. Rusty’s tomatoes are ripening and Ross enjoys them immensely. I chop them up and he eats them with a spoon. It is also raspberry season again and he is starting to prefer a spoon for eating them because they are slippery between his fingers.
Last weekend I noticed that the pupils of both eyes were consistently the same diameter. That is the first time since he was hurt. That has pretty much continued, but I notice when he is tired or confused, the left one is again larger than the right. Yesterday, I even noticed that both eyes seemed to be tracking together. Ross stared at me when I asked if he was seeing one or two. As I write this, I realize I was moving too fast and should have asked only one question. For example, “Do you see two of me?"
I have saved the best for last. Yesterday, the therapist had Ross stand against a wall without support. He did it four times then. Today, he did it again. Rusty and I are so excited and Ross is very proud of himself. This is a huge accomplishment.
If you are on our mailing list, look for the new letter to arrive soon. The photographs of Ross enable you to see the changes. We are so grateful for his progress. Thank you to all of you who make it possible. Onward and upward!
July 11, 2008 An update from Ross's mom:
We have been very busy with visitors, appointments and life’s unexpected glitches. Ross’s sister Liz and her family were here for a week. Initially, Ross was very quiet, and Liz was saddened to see that Ross was not as responsive to her or as verbal as he was in December when she was here. However, Ross delighted in the children and laughingly watched them. The children played ball with him, accompanied him as he drove outside and stacked cones with him. He occasionally became agitated and showed it. It was upsetting for the children, and I was able to say that it makes me sad when he reacts with anger and fear too. We all recognize that it is not personal, and it is another example of how this tragedy as affected all of us. However, their experience was mostly positive. And Ross, told Liz, “I love you” just before she left.
Ross’s digestive system appears to still be recovering from all the antibiotics. The doctor is doing some tests, and we are waiting for the results. I have been able to find some books on digestive enzymes and I have slowly increased the enzymes Ross takes before each meal. It has made a difference and I think it is making a difference in his cognitive functioning. For anyone interested, the author of the books I have is Karen DeFelice. The one I really like is Enzymes for Digestive Health and Nutritional Wealth. Her web site is www.enzymestuff.com . I am realizing how critical enzymes and the digestive system are for all of us, but even more so for the neurologically challenged.
Ross’s progress in therapy is wonderful and his therapists are very pleased. He is walking on his knees, moving himself around on the floor, climbing on to the therapy table from the floor and rolling from his back to his side in bed. While his motor skills are progressing, he still isn’t talking as much since the last grand mal seizure on June 10. When we saw Ross’s neurologist yesterday, he suggested that Ross might be thinking more and, as a result not speaking as much. It does seem that he is more thoughtful and he does communicate his desires. Another thing I noticed is that he is not constantly asking for food. We have gone to church the last two Sundays and he didn’t ask for food either time until the very end. Before, he would have been agitated and asking for food from the beginning. He is also actively reading printed material. The doctor handed me some information yesterday, and Ross spent a few minutes looking at it as if he were reading. One other thing, the neurosurgeon said that the last CT scan on June 20th showed smaller ventricles. That is a great report. We have always been told that they are big, because of the injury related damage to his brain. But Rusty found a report online that indicates that on a scan, large ventricles because of hydrocephalus can’t always be distinguished from large ventricles because of damage. Rusty and I feel that Ross is on an up slope again. Onward and upward.
June 15, 2008 (I'm posting this from Montana--just received an email from Betsy with an update. Wifi is EVERYWHERE!)
You may be on the road again. I received your e-mail in the midst of making a birthday dinner for Ariel. Ross enjoyed the card
Ariel. I had found a Mary Engelbreit file folder that was so like Ariel when she was a little girl and I typed up a verse about Ariel
inside. He laughed when he saw the folder, and instead of writing his name on the inside, he drew a decorative line around the the whole verse.
Later he watched the movie "Hairspray" on television. I went in and sat with him and he laughed continually at the movie. At
and looked at me as if to say, "Isn't this outrageous." It is so wonderful to have his laughter back.
Last week at the Hill Climb there was another little toddler, just like last year. Ross loved her and laughed with joy as he watched her. At one point, her mother lifted her to see Ross, and Ross asked, "Are you a woman?" I think that was an example of his difficulty in retrieving words. He was thinking girl, but woman is what came out of his mouth.
His speech skills have been better until last Wednesday when he had another grand mal seizure. This time, articulate speech is slower to return. However, he is doing well with crawling with the therapist and standing on his knees. We are also back to having him stand for a half hour several times a day. We are hoping that getting back to standing a lot, something we couldn't do while the bone plate was missing, will help his brain to send signals to his left foot and leg about the correct position. The orthotics that he wears have been rubbing and creating blisters. Ross saw a very good podiatrist last week, who pointed out that that the problem is that Ross's ankle keeps turning. There are surgical solutions, but we are committed to using weight bearing and positioning first. There is also the question about the shunt. Too high pressure inside the ventricles can interfere also. So, I will call and start the process of securing an appointment for a CT with sedation. Comparing a new CT with the previous ones will help the neurosurgeons determine what is going on.
When I last wrote, Ross was scheduled for an ambulatory EEG. We took him in to San Francisco to have the electrodes attached, then a turban wound around his head to hold them in place. He did well under the circumstances. It took about an hour of sitting quietly with no entertainment except his silly mama and some crackers. At home we were able to record both a small petit mal seizure and a grand mal seizure in the first thirty hours, which meant Ross did not have to endure having his “gear” attached for a whole seventy-two hours. Ross’s sleep was disturbed for a few nights afterward; he didn’t sleep at all one night, and he was very animated during the day. Rusty’s experience with neurofeedback leads him to believe that the passive EEG equipment does create a small amount of stimulation and Ross, with an injured brain, was very sensitive to it. The EEG showed that both seizures and some nighttime spikes had come from the same spot in Ross’s brain, the right temporal lobe.
The next step was the medication adjustment. Ross has been on the neurologist’s protocol for tapering off Tegretol for about a month. He now is almost completely off Tegretol and on a maintenance dose of Lamictal and Vimpat. I would never have imagined that the medication change would affect Ross’s cognition so much. He is dramatically more aware of himself and others. His speech is more complex and relevant. For example, we were watching the last stage of the Tour of California and then footage of an old Tour de France on television. Ross watched intently, and after a while he said, “It is just a bike.” And “this is an international race.” He has also started watching Jo, the dog, and, for the first time in eight years, he is now enjoying her antics. He pets her; he tells her “Be quiet” when she is barking. One day, he looked at his watch and said “Oh no! It is five o’clock.” And it was.
Cognitive exercises that used to cause small seizure activity don’t now. He is typing, using an adaptive keyboard, and instead of just hitting keys, he is looking at the screen to see what he has typed. He is sometimes writing his name on the computer. Yesterday, I wrote on his paper, Ross Juan Dillon. Ross read it aloud, and then copied it himself. His puzzle activity is improving with the harder puzzles, and concurrently he has more flexibility in his right hand and increased use of his left side, arm, hand and leg.
Another example, we were watching television. I was talking when the programs we watch started. Ross said insistently, “Mother, Mother” to get my attention. When I looked at him, he nodded at the television to indicate our program had started. One last incident, Ross’s old humor is back. “I hate you. You are ugly. Just kidding.”
Another story, I was wearing the orange Team Ross shirts we had made eight years ago. Ross looked at the shirt, written in cursive, and said “Ross! That’s beautiful. That’s beautiful.” Onward and upward! Thank you for being part of Team Ross.
April 12, 2010--A quick note from Betsy about the video:
I just realized as I watched the cycling video that Ross was singing and the words were; “I am the king!” “Up!” “I love you.” “I am a man. I am your father. No! I am your brother!”
Ross had a very good therapy session today with lots of standing by pushing down with his hands, coming up to a squat and then standing. He did it many times and his sitting down was also controlled. Letha was very pleased. After lunch, he seemed to be on the edge of a seizure, but it passed.
Betsy
April 10, 2010--I just got an update from Betsy, along with a video:
We went to see the seizure specialist on Wednesday. As expected, the doctor wants Ross to have an EEG. This will be an Ambulatory 72 hour EEG, and we hope to capture a EEG record of seizure activity during that time. Ross has an appointment to have the sensors attached, and then we will bring him home. He will miss his daily showers, but the rest of life will go on as usual. After the EEG is finished and the physician has evaluated the information, we will start to reduce the Lamictal. I am so glad that I have kept daily records for the last almost seven years. I plan to go through them soon in order to see if there were more seizures connected with any one of the medications he has taken.
Ross is not having obvious seizures at this point. He is doing very well in therapy. His transfers from bed to chair are becoming easier, though he still needs help for safety. He is pulling himself up to standing by himself using the transfer pole (it’s too bad the pole doesn’t move with him). He also can now scoot himself on the seat of his chair (with the seat belt on) around to see what is behind him. He did that the other day. He was sitting at his table after eating, and was very tired, almost dozing. I was behind him working at the table and looked up to see he had scooted around (a grin on his face) to nonverbally asking me to put him in his recliner.
He has been sleeping very well except for one night last week when he was awake from 2 AM on. He is doing much better with the jigsaw puzzles, especially since we have numbered all the pieces. The numbering enables him to have an additional strategy besides the shape of the piece to use in figuring out where the piece goes. One disclaimer, he is not doing these 100 piece puzzles by himself, but is an active participant; he is very happy when he puts the piece in the right place.
He is trying to put everything, including puzzle pieces, in his mouth again. It is nerve wracking because we have to watch him very carefully. We are clearing the space on his table since he can lean forward and reach more things. Today, he reached over and picked up the hand mirror that we keep on the table and put it in his mouth. Since it could break, I removed it. He is also asking for food immediately after eating. I suspect that this oral fixation could be associated with being over medicated. He is also much grumpier and stubborn. He is highly reactive to unexpectedly being touched, although he does signal Rusty and me to lean forward for kisses.
He is also reading words on television, not just the letters. Rusty has set up an old lap top computer for him to use. Ross has now made the connection between pushing a key and the image on the screen. Last Sunday when we had many friends here, he said, “Patricia” (one of our friends) for the first time. He frequently points to his recliner which means he wants us to move him there. He can now sit and rock himself for a long time, up to an hour. His left foot is even flat on the floor at these times, something we have been working on for years. Things are slowly getting better. Onward and upward.
March 31, 2010--a really encouraging update from Betsy:
Ross is doing so much better. I feel that the new medication, Vimpat, is the key. Ross had a great weekend. He has been talking in complete sentences and the seizures have stopped. When he pedaled on Sunday, I couldn’t believe how fast he was going. I think the filming worked, but I haven’t had a chance to send it to YouTube. In the first couple of days after starting the Vimpat, I would see Ross look to the right side and then slowly turn back. It seemed that he was starting a seizure and then it would stop. This is consistent with the description of the drug’s effect - it prevents seizures from happening and stops them. Obviously, we are hoping that this is going to enable us to reduce the other seizure drugs. We will see.
Ross’s neurologist instructed us to reduce the Lamictal by another 50mg a day starting Sunday. On Monday morning we increased the Vimpat. On Monday we saw some pre-seizure activity, more volatility and confusion. Again, I think this was because of reducing Lamictal. By Tuesday he was doing much better. While he has occasionally been confused and volatile, he is continuing to improve.
I have been delighted this week with his comments. “Who are you?” I answer that I am his mother. He answers with a big smile, “I love you.” Today he said, “I am happy that I am the king and can have food.” He has also said several times, “I have a name.” I ask what his name is. He says, “Ross.” He said to Rusty, “I am who I am.” He is also doing much better with transfers, standing up with more control and moving from one place to another. He is also scooting himself around on the seat of his chair in order to kick the ball when it rolls to his right side. We are very grateful for his progress. Onward and upward!
March 22, 2010--an update from Betsy:
The beat goes on. Ross is better, but still having the Aversive Seizures of last week, although they are not coming as often. He also had a two stage grand mal this afternoon. We are starting the third medication tonight, and then hopefully reducing the Lamictal down to the previous dosage. Ross’s appointment with the seizure specialist is April 7 in San Francisco. This is so hard on Ross, and not easy for the rest of us to see him go through this. Thank you for your prayers.
March 20, 2010--a more positive message from Betsy:
Ross is so much better this morning. The only change is the reduced dosage of Lamictal; we decreased the 6 P.M. dosage last night. Before that, for an hour and a half I sat next to him timing the seizures and intervals between. The interval between seizures averaged about seven minutes and the seizures were from one to two and a half minutes in duration.
He didn’t go to sleep until 11 P.M., slept fitfully for an hour and then slept until 5 A.M. He had turned on his side and drawn up his legs during the night--another good sign. His swallowing when we gave him his medicine and food was much better. He went back to sleep for three hours, had breakfast, went back to sleep is just now waking up for lunch. All of the seizures over the last five days were so exhausting and he is so tired. We are grateful that he is able to sleep today. We have seen no seizures today and this is a big improvement. This morning his pulse rate was 65; the last five days he has averaged 85 up to 110.
We hope we are on the other side of this. Lamictal may be good for other people, but not for Ross.
Thank you for your support.
Betsy
March 19, 2010--more from Betsy:
We just came home from seeing the neurologist. Ross is feeling a little better, and the doctor was able to see what we have been seeing all this week. Instead of calling them Absence Seizures, he calls them Aversive seizures. Today I have timed some of them and they last between one and a half to two minutes. Ross is very tired and that is probably because of the constant seizure activity. The doctor does not think they are causing more damage, which is good.
The question of why is unanswered, but since the Lamictal dosage is the only thing that has changed, we are starting to decrease the Lamictal amounts tonight. In a week we hope to have the dose back down to where it was a month ago. There is a new antiseizure medication that might be a good replacement for Ross’s other seizure medications. After Ross has recovered from this ordeal, we will explore the new medication. The process is likely to be long and tedious, but we are being referred to a doctor in San Francisco for consultation.
This is so disheartening; Ross has been doing so well and to have this episode is not fair. But then, often the world isn’t fair. Please keep him in your prayers.
March 19, 2010--Ross is still having problems:
Ross is still having a hard time. Rusty and I feel that it has to be related to medication changes. Exactly one month ago, we agreed to try raising Lamictal and then trying to get Ross off Tegretol because of Tegretol’s serious side effects. Increasing the Lamictal is the only thing that has changed. As observers it is hard for us to determine if he is having constant small seizures or hallucinations or both. We are taking him to the neurologist early this afternoon. Please continue to keep him in your prayers. We are so grateful for your support.
Betsy
March 17, 2010--just heard from Betsy:
GOOD NEWS! It is 7:30 P.M. and we just came home. Ross’s doctors agreed that sleeping at home was far better for Ross. The tests: blood test, X rays and CT scans all came back showing no problem. I think the absence seizures were probably because he was fighting a virus. Those seizures could have been harder on him than we realized, although we were pretty concerned. Then the two grand mal seizures added more stress. One of the doctors thinks that today Ross was suffering from postictal (post seizure) confusion and lethargy. He is looking better now, while still affected by the sedatives given to keep him calm for the x-rays and CT scan.
I have to say that we had a wonderful experience with the nurses and doctors today. We even talked to a nurse who had taken care of Ross in ICU in 2002.
Thank you everyone for your prayers and thoughts.
Betsy
March 17, 2010--a quick update from Betsy:
A quick update about Ross. He slept well until 4:30 A.M. when he woke up and had a grand mal seizure. It was intense, but the shaking part lasted for only five minutes, in contrast to previous ones. The whole episode from start to calm was about 15 minutes. We thought that was the end of it, but he awoke at about 8:30 A.M. with another grand mal, although much less intense. He went peacefully to sleep, but now is awake and keeps turning his head to the right and is much less responsive. I am waiting for a call from the doctor. I will keep you posted.
Betsy
March 16, 2010--Something we've not seen for quite some time, but Betsy has asked for your prayers for Ross--she wrote:
The last day and a half has been a roller coaster ride. Ross has been having very frequent near grand mal seizures. They are really absence seizures with a little bit of trembling of his right hand. The problem is that they are hourly or more often, except when he is asleep. It occurred to me that you could put this on the web site and ask people to pray for Ross and all of us who are trying to understand. I should say that in the midst of all this there are wonderful moments of contact and interaction.
Thanks,
Betsy
March 11, 2010--a brief update from Betsy:
There is so much to report about Ross’s progress. This first installment is about the Grasshopper nearly three weeks ago. It was an impressive event with a large number of riders; I heard there were three hundred. We were all bundled up because of the cold and greeting old friends and meeting new people. Ross seemed to be more present and aware than on other occasions like this. One man came up and introduced himself. When the man said who he was, Ross said to him, “How are you?” We have never seen Ross do that before. Later, Miguel, the organizer came over to talk. I noticed that Ross moved his right hand the way he usually does in order to shake hands. When I mentioned that I thought Ross wanted to shake hands, Miguel turned and shook hands with Ross, and it seemed that Ross made eye contact with him. It was a very touching moment. When all the riders rode away, Ross seemed to want to be riding with them. I think he identified with cyclists on their bikes for the first time since his injury. I asked him about it because he seemed wistful. His nonverbal response was a slight nod.
Ross is now pedaling about an hour each day and is pedaling harder; this is in contrast to the last six months of lackadaisical pedaling for maybe half an hour.
I am enclosing a picture of Ross and his sister Ariel taken at the Grasshopper. More later.
February 13, 2010--latest update from Betsy:
It has been three weeks since we posted the video of Ross walking. Now that I have discovered I can film videos with our digital camera, I am eager to do more. I will have to think more like a photographer and always have the camera ready to capture Ross at the beginning of an “O wow” moment, not after he has expended most of his energy.
Thank you to all who have written or called to say how excited you were to see Ross walking. Many people have asked me how Ross is doing now. The answer is that Ross is doing well. Is he walking by himself yet? No, but he triumphs in small ways each day. For example, during therapy on Wednesday, he walked on his knees while pushing a big exercise ball in front. He has been walking on his knees, but this day he was able to balance on his knees while also thinking about using his arms, and how to push the ball with his hands. All at the same time! It reminds me of Pinky Lee, patting his head with one hand while rubbing his stomach with the other hand and hopping on one foot, when I think about how difficult putting all those moves together must be for Ross. He is continuing to write numbers, his name, and letters of the alphabet. About a week ago, I showed him a book that had been given to his dad. The inscription, written in cursive, read, “Given to Charles Ross Dillon.” Ross zeroed in on the name, put his finger on the Ross Dillon words, and said “I am Ross Dillon.” Last night, while on the edge of a seizure and very confused, he lifted not only his right foot to put it on a chair, but also lifted his left foot. Lifting his left foot that high was another first. Today, when we went to the lab for blood to be drawn, the guy who has been a fearless champ at having blood drawn for the last year or so was resistant. He said “Sister”, talking to the lab tech, “Pain.” When the needle went in, he said, “It hurts!” As I talked to the lab tech afterwards, we talked about how progress brings other issues. The work will not diminish, it will just be different. Ross now feels more sensation in his left arm (where the blood is drawn) and he also remembers previous lab visits. I think that awareness was part of today’s resistance.
I am continually reminded that Ross’s progress is never a straight upward progression. It frequently involves a great “Ah ha” like the walking video, and then what can seem like a regression, then a small spurt in one area, then another spurt somewhere else, then a few down days, and then another “Ah ha”. In retrospect, it is like climbing a steep mountain. We take switchbacks, rests, and sometimes a brazen straight up, after which we have to rest. Isn’t that like life?
Rusty and I are so proud of Ross. Despite his terrible injuries, he continues to face the challenges with determination, persistence, and even joy. God is good!
January 15, 2010--this is just so cool--Betsy just sent film of Ross walking.
January 13, 2010--an update from Betsy:
There is the adage “When it rains, it pours.” Actually, it is raining now, and we need it to keep life going. I am not so welcoming of the metaphorical rain that pours into our lives, but it is also a part of life.
Ross is certainly a role model for me. In the early bleak days after he was hit by a car, I told him over and over that we would make delicious lemonade from the bitter lemons we had been given. And, indeed, Ross is making lemonade-he has responded to his predicament with determination and courage, even though his understanding is often clouded by confusion. One poignant example is his first smile in early December of 2003, six years ago. He had just awakened and was sitting up in bed, unable to move, and suddenly a beautiful smile spread across his face. Now we fast forward to night before last when he seemed to sleep through the night on his left side. He has started to roll over with his knees slightly bent and fall asleep. How normal!
Speaking of normality – a few days ago, after Ross had finished lunch, we cleared his plate, but left his glass of water on the table. Always before we have asked him to drop his spoon and then handed the water to him. After having his plate removed, Ross dropped his spoon, leaned forward and picked up the glass, sipped some water, and then put the glass, still partly full, down on the table without spilling a drop. This was another one of the firsts we celebrate.
Yesterday, during Occupational Therapy, Ross was pretty confused, but Letha, the therapist, was persistent and suddenly Ross not only understood what he was supposed to do, but made a breakthrough. The task was to walk without turning his feet so far inward that his feet become tangled. When he finally agreed to walk, he walked with his feet moving forward in parallel. He has not repeated it, but now we know he can. Later, I was talking to him about what Letha had said about the session, suddenly he had a beautiful sunny excited laugh. It seemed that he was remembering the event and was definitely delighted.
This reminds me of something the Lens therapist told Rusty recently. She admonished us to remember that Ross (and other brain injury survivors) can be ON (communicating and working well) and suddenly be washed with overwhelming fatigue and unable to do anything. We have started calling this Switching Channels. Ross can be talking, being playful and suddenly he is frightened and combative, or just so tired that he sits with his head bowed and minimal response to us. We do find that we can reassure him, even in his confusion. We touch him, we hold him, and tell him that he is safe. Usually he appears to come back, gives a little smile of recognition, and is calmer. As Ross becomes more cognitively alert, we see more channel switching all through the day.
Ross continues to read. I have pulled out the Richard Scarry books from childhood. I was reading one with him last night. He loves the humorous animal personalities and even seems to understand some of the word play. Last night he put his finger on the picture of a gasoline truck in the picture, and very clearly said, “What is that?”
Though life seems very hard these days, we know we are not alone. Thank you for being there with your love and prayers. Onward and Upward.
December 10, 2009--a brief update from Betsy:
Life has slowed down a bit for our family, and I have a chance to sit down and write. Ross has been having more small absence seizures, but he is also cognitively more aware. He is talking more conversationally and in complete sentences. Two nights ago Rusty was rocking Ross's bed a bit, and Ross said, "That's like sailing; that feels good." Yesterday, during therapy, Ross was doing really well and Jeremiah said, "Good boy!" Ross replied, "I am not a boy. I am a man."
After therapy today, Ross walked to the living room, with help, and sat in his recliner. He began to rock, and it was wonderful to see how he was using his quads, his core abdominal muscles and his head, all in a synchronized flow of movement. He sat, talking to us, doing an inventory of all of us as he frequently does these days. Jeanette (the PT) is my sister, Jeremiah is my brother, Rusty is my father, and I get to be both my mother and my sister. He also played with the dog and for the first time stroked her nose. Later, I took him to the lab to have blood drawn. His last blood test did not show any problems, except his Tegretol levels were a little high, and sodium a tad low. The higher Tegretol can be the reason for lower sodium and for the increased seizure activity, but we always double check before reducing seizure medication. As we were driving, he was watching everything, he told me that he loved me, and then he said, "I am happy." As always, when Ross is happy, we are happy.
December 1, 2009--an update from Betsy:
We have had the usual ups and downs in the last few weeks. Ross has had a couple of grand mal seizures in the last month, but many fewer partial seizures. Ross is enthusiastic about mastering the art of scooting himself from one end of the bench to the other. (Lifting his bottom off the seat enough to move a few inches to the right at a time.) He is practicing pulling himself to standing and walking around the pole with minimal help. He continues to read and is now doing simple addition and subtraction problems.His speech has improved. He is more conversational and he is talking to himself - one of the important steps in child development. The main theme is, "Ross, you are a man." Or, to me, he said, "I said to Ross, you are a man."
On Friday, Ross and I looked through two photo albums that a family friend created for him. One is a collection of pre injury pictures from Thanksgivings through the years with our extended family. There are pictures of Ross with friends Luke and Katie from their infancy forward, being held by Ross or later playing with him (they are now 15 and 17). Ross enjoyed the pictures of himself with with Luke and Katie, and with Ariel and Eva, a friend with whom he grew up. He shows his interest and pleasure by repeatedly touching the faces with his finger and smiling. The second album is composed of post injury pictures. As I showed him a picture of himself in intensive care, and another picture from when the doctors said he was in a vegetative state, I talked to him about how much better he is now. He seemed to understand and nod his head as I told him how proud we are of his hard work and progress He seemed able to understand that he has been getting progressively better over time. Of course, my interpretation is subjective, but I have come to believe that I do understand a lot of his nonverbal communication. This experience of what appears to be increased cognition is also demonstrated in other ways.
We were watching television last night. Ross looked at me and said, "You are my mother." He looked at Rusty and said, "You are my father." He looked at Jeremiah in the kitchen and said, "He is my brother." Then he said, "We are a family."
I have saved the best for last. On Thanksgiving, Ariel went into Ross's room. Ross was seated in his wheel chair with the seat belt fastened. He started pointing to the buckle of his seat belt. Jeremiah asked him if he wanted to open the belt. Ross nodded yes, When Jeremiah opened the seat belt, Ross moved his feet from the foot rest to the floor (this is the precursor to standing). Jeremiah held Ross's left elbow while Ross stood up. Ross gave Ariel a big hug, and sat down in his chair. What a wonderful gift for Ariel and the rest of us. We grieve for what is lost, but we rejoice in every step of Ross's recovery. Thank you to all of you for your wonderful love and support. You are part of Ross's healing.
October 24, 2009--My apologies--Betsy sent this update yesterday but I was out of town w/o Internet.
Ross continues to eagerly tackle challenges. One place we see this is in the way he leans forward in his wheel chair with good posture and sits that way for ten or fifteen minutes. He also does this when he wants to sit on the couch or wants to walk. I often realize that emotionally he is ready to walk on his own. The other day, during his session with the OT, he leaned forward, grabbed the transfer pole and sat down in his wheel chair with no help. He was so pleased with his accomplishment. He gave us the thumbs up sign, smiled widely, and said, "I am a man." A few minutes later, he said,"I am happy." He accented both syllables, hap py, which always sounds happy to me. Letha, the therapist, then took us to Ross's room and had him work on getting out of bed on his own. She had him sitting on the side of the bed, grabbing the lower rail to pull himself to standing, then turning to sit in his chair. He will need to practice, practice, practice in order to master the process, but when he can do his own transfers, without a strong body to help, it will be a big change in our lives, more independence for Ross and more vigilance on our part.
Another improvement is his ability to follow specific verbal instructions. We have sometimes seen this in the past, but during Thursday's therapy session he was able to correctly respond to most of Letha's instructions. In fact, when he is moving from the couch back to his wheelchair and seems confused about walking backward, I find that if I tell him to move his right foot backward, he does it. Our team of therapists is good about trying to respond to Ross's lead. For example, yesterday, after the stand, walk, sit routine, Ross wanted to walk outside. With Letha and Jeremiah assisting, he walked to the van, got in on his knees, and crawled up on to the bench seat. He happily sat there for a while. I went into his room a few days ago and he was squinting with his left eye; in fact, it was almost closed.I asked him if he was having trouble with his eye and he nodded yes. I gave him his eye patch, and Ross said, "Why does that (happen)." After I explained that head injuries can cause vision problems and that he is getting better, I realized that his question came from a new level of cognitive processing.
There are two more new achievements. Ross is putting magnetic letters together in order. This works if he does not have to choose from many letters at once. Last weekend, I almost precipitated a seizure by having all the letters on the table from which to choose. He put the letters on the white board in order A-F and I watched him try to make sense of all the letters, trying to decide between two letters (one was the next letter) for the next placement. He "hit the wall" and I could see a petit mal starting to happen. I put away the letters, and tried to reassure him. After lunch, he napped and then awoke and was okay. I felt terrible, but I was able to recognize that while he can do the alphabet puzzle, putting the letters in order as I was trying is a different modality and it needs to be structured carefully. One of our friends has made an amazing recovery after being thrown from a horse and she says that putting together nuts and bolts triggers petit mal seizures for her. I know of someone else who was no longer having seizures, but doing tongue twisters triggered a seizure. For Ross, it seems that sometimes an emotional recognition triggers a petit mal. Finally, I gave Ross an addition problem. I set the problem up on the whiteboard, then gave him three file cards with numbers and ask him to choose the card with the correct answer on it. He gave the correct answer with the first try. He successfully did another problem the next day, but when I tried to have him do a second problem, it was too confusing.
Finally, I have wanted to mention how progress for the brain injured, and at some level for all of us, is not linear. We were told by an experienced nurse in the early days, "Three steps forward, two steps backward." A friend who is the mother of a child with a brain injury calls it "The Brain Injury Train." I was talking about this with Letha (the OT) and she said she thinks of it as an electrical entrance box where someone pulled out all the wires, stripped off the insulation, and put the bare wires back in. The result is often surprising and unexpected. I have been especially aware that it is not only the patient who goes through this painful recovery, but it is the people who love that person. We rejoice and feel great when progress is relatively uncomplicated, and we are stricken when we encounter one of the terribly steep mountains. For those of you reading this who have loved ones on this train, our prayers are with you and we welcome inquires from you.
October 7, 2009--More good news from Betsy:
I have more good news about Ross. First of all, on Friday night, while lying in bed, he rolled on to his right side. He has never been able to do this because his left side has been so slow to recover. He did this roll completely on his own and lay there for about thirty minutes. Again yesterday, he did the same thing. This is such a huge accomplishment. Also, on two different nights he turned on to his right side and slept there for part of the night. These movements that we don't even think about have been big obstacles for Ross. Yesterday, Jeremiah had Ross reaching out his left arm to hold the rubber ball, then bringing the ball into his chest, holding it with both hands and raising it to face level. He also moved the ball from left to right and back.
Today, even though he was tired after physical therapy, Ross worked on some cognitive material. As the therapist pointed to each letter in the alphabet, Ross said it's name. He said the names of all the letters except Q. When we asked him to print the letters, he started getting mixed up as to which letter was next. I think this was because of fatigue and his vision. When I put on his eye patch he seemed to do better. He did something else new and exciting, he switched from just writing the letters, to writing the outline of the letter. After lunch, we printed the letters on his easel and had him copy them. He not only did it, but most of them were symmetrical. I am so proud of him. Onward and upward.
October 2, 2009--I just received a wonderful update from Betsy:
There are so many good things to tell you about Ross. He has entered a new dimension of cognitive awareness and understanding. Ross had a doctor's appointment yesterday. I told him in the morning that they would be taking his blood pressure using a cuff above his elbow which is different from the one we use at home. I asked him to cooperate with the nurse. Well, hours later, when the nurse said she needed to take his blood pressure, Ross lifted his arm for her. Later, when the doctor walked in, Ross extended his right hand to shake his hand. While we were waiting, I read a Bernstein Bear book to him. There was a picture of the bear children sleeping in their bunk beds. I reminded him of the bunk beds he and Ariel slept in when they were young. Then I said, "We still have them." Ross immediately asked, "Where?"
During physical therapy he has been walking between parallel bars, sliding both hands along the rails. Last week Ross was sitting on the plinth, the therapy bench, and the therapist had to take a call. While she was away, Ross reached out and grabbed the transfer pole, then pulled himself to standing. He proceeded to walk around the pole ( the therapy assistant and I were standing guard) and then sat down. All of this was voluntary without any instructions from us. The other BIG improvement is that he is holding a large ball with both hands, even lifting the ball with both hands. Yesterday he was throwing a small ball, not just grasping and dropping as usual, but throwing it for Jeremiah to catch. His skill is still rudimentary, but awesome to watch. Both the PT and OT have remarked that Ross really likes to learn new things.
He is continuing to read and he has started to say the names of the letters as he put each piece of his alphabet puzzle in place. His vocabulary and syntax are improving. He recently told Jeremiah, "I am scared. I am afraid." Another time, when I left his room, he asked, "Was that my sister who just left?"
Also, he is less explosive and, after blowing up, he quickly laughs at himself. The things that make him angry, rather than confusion, are when one of us undertakes to wipe his mouth. I see this as his feeling that he is being treated as child, and I try to encourage everyone to hold a mirror so he can see himself. When we do, he wipes it himself. The other day I was washing his face and he didn't like it. When he protested, I handed him the cloth, and for the first time he tried to wash his face, rubbing his forehead and the side of his face. Finally his seizures are milder and further apart. Rusty and I believe that the LENS treatments are definitely helping him . We are very pleased with his progress.
September 2, 2009--Ross turns thirty-three on Monday. I received a poignant note from Betsy, a reminder of how much time has passed since Ross's life and that of his entire family was so terribly changed and forever redirected over seven long years ago.
The days slide by as we try to do more for Ross, and as I try to incorporate more into his various therapies and routines. I recently had a poignant dream that symbolized the interweaving of loss and reality that underlie our days. I dreamed I was asleep and I heard Ross say, "Hi Betsy" in the same tone he used to use when saying, "Hi, Mom." I turned to look and saw fifteen year old Ross standing in the doorway. I ran to him and we embraced. We were both crying, and I said, "Ross, I have missed you so much." Ross replied, "I have missed myself ." After a good cry, I went to tell Ross about my dream. His smile was so welcoming, open and sweet that I thought that somehow he has been involved in my dream. After a minute or two of listening to me, he sweetly said, "Give me food." Poof, back to the real world where hope, dreams and discouragement constantly mingle, and Ross wants food.
Ross continues to show great courage, determination and frustration. He is crawling more expertly, similar to a combat crawl in which he is able to use his left leg more. I watched him walk across the room on his knees (the therapist and assistant on the floor with him) the other day, and he was fast. He is also sitting on the therapy bench, reaching out and grabbing the transfer pole with his right hand, and pulling himself to standing. He then, on his own, but with us standing guard if he starts to fall, walks one step at a time around the pole to his wheel chair and sits down.
Today, during PT he was sitting on a therapy ball, with the PT behind him as he bounced, one, two, three - stand, grab the pole. We are doing some concentrated work with Ross standing without the hard orthotics on his feet and constantly we are checking and realigning the left foot so the brain and far away foot are learning together how normal feels.
Ross's left hand is often open when he is asleep. On Sunday, I watched him deliberately open his left hand with fingers extended. It was amazing because he was watching his own hand and was excited when he realized he had opened it. I see this as part of his increasing self awareness, both in speech: "I have two eyes, a nose, one mouth." More attention as he watches his own right hand as it starts to quiver when he is having a small seizure, and an increase in control when he lifts his left foot to have us put on a sock or shoe.
His seizures are definitely briefer and lighter. He has not had a Grand Mal for several weeks. We have noticed that intense cognitive work for much more than a couple of minutes triggers small focal seizures. We have a sense, in consultation with the LENS experts, that his brain is achieving a new balance, where he can do more, but too much intensity is too much stimulation, and then there is small spill over in the brain. It is similar to getting ready for a high altitude backpacking trip. One has to gradually train, adding more strength, stamina and mastery.
On Monday, Ross will celebrate his thirty-third birthday. It is another occasion to remember the wonder and joy of his birth, wonderful stories of his growing up, reworking our expectations and dreams, and looking to the future. Thank you so much for your prayers, love and support. We could not be doing this alone.
August 5, 2009--I called Betsy last night, concerned because I hadn't heard from her in such a long time, and they've been tremendously busy caring for Ross and dealing with the effects of trying to regulate his medication intake. There appears to be a very fine line between theraputic doses and toxic doses of so many of the medications Ross takes, but I'll let Betsy explain what's going on:
Ross continues to improve. He is still reading, line by line. The other day when we were reading a Berenstain Bears book together, he would push my hand out of the way when I happened to be blocking the line he was reading. That day, he not only read some of the words, but also spelled some. His speech has improved and he forms complete sentences more often.He is very articulate when he is angry with us. This happens when we are insisting that he work in therapy, or food isn't coming fast enough, or we are doing something that like dressing, brushing teeth, or shaving that he doesn't want. Sometimes he explodes without provocation; this is not unusual for people with brain injuries. However, there are other possible causes; one is subclinical seizures, another is medication related. We have been continuing the Lamictal (antiseizure drug) withdrawal. I reduced the dose by 25 mg about two and a half weeks ago. This was a reduction of twelve percent. Within days he was having more seizures, both partial and grand mal. After about ten days, I added back half a tablet, and while the seizures were much less, he was terrifically angry. Over the weekend, he also appeared to be hallucinating. His angry outbursts would suddenly just happen, and he spent a lot of time looking down and being grim. In fact, I wasn't help to bring a smile to his face with my silly antics, something that always works. When I mentioned it to the OT on Monday, she said that the only time she had seen hallucinations with brain injury patients, it was related to drugs. So back to the internet and reading the stories of other people who have had difficulty with Lamictal withdrawal. Sure enough, there was a story of a woman who had started tapering from 400 mg a day, and after years of tapering was down to 2.5 mg. When she dropped that last 2.5 mg, she started experiencing tremendous rage and depression. With that information, we took Ross back to the full 100 mg night time dose on Monday night. Amazingly, 90 minutes later, Ross was relaxed, smilingly sweetly and saying, "I love you." He is more relaxed now. This is anecdotal and we will see if this better mood continues. It is time to take Ross to the chiropractor. Thank you so much for your caring about Ross. We are sustained by your love and prayers.
July 2, 2009--Just received a long update from Betsy:
It has been another eventful month, but aside from a minor scare on June 6, the day of the Ross Epic Hill Climb, and a couple of seizures, Ross has been improving on all fronts. On the morning of the sixth, Ross was flushed, had elevated blood pressure, a high respiration rate and his axillary temperature was 100. We agreed that we needed to stay home. I gave him Advil, vitamin C and a homeopathic remedy for virus symptoms. By noon, his temperature was normal and he was feeling better. Again, we can only hypothesize why. It has been a terrible time for hay fever this spring and many of us were congested. Ross has been more congested than usual for two or three weeks, despite all my efforts. It could have been hay fever, but I have another possible explanation. I have been thinking that this fever and the previous fever in April could be related to the healing in his brain. We were told by the LENS practioner that as Ross’s brain equilibrates itself, some symptoms that he once had might briefly reappear. During the first forty-two days post injury, Ross had raging neurofevers, the cause of which was never determined. It is possible that milder artifacts of those fevers are occurring as the neuro suppression in the brain comes off. As I think in this vein, I wonder if his worsening congestion for a while was a result of a lifting of neuro suppression, especially since he is much less congested now.
We also have been able to cut Ross’s antiseizure medication Tegretol back to the pre 2008 dosage because his blood levels had climbed to a toxic level. He has been calmer and less tired since we reduced the Tegretol dosage. We are still tapering the Lamictal and that is going well.
On the motor skills front, Ross is learning to pull himself up at the transfer pole. One day he pulled himself up with the transfer pole while our backs were turned. He is pulling himself up and then walking around the pole to the right and also to the left to his wheel chair. We are standing guard to help him if he needs it, but he is doing at least fifty percent by himself. A week ago, Ross walked down the hall to the kitchen with Letha (OT) on one side and Jeremiah on the other. Letha said it was the first time Ross seemed aware of his core (trunk balance and strength) and his arms.
He is also now able to track the interaction in a group. Last week at the LENS session, the practitioner, Rusty and I were talking and Ross was following our conversation and looking at each one as we spoke. The day before, Ross said, while looking at me, “Yellow, red, blue!” Then he looked around to Letha and the assistant and said, “Blue, blue!” He again looked at me and said, pointing to my shirt, “Yellow, red, blue and white.” I was wearing a blue shirt with yellow and red embroidery over a white shirt. The others were also wearing blue shirts. Letha asked him, “What color are your pants?” Ross looked at his pants and correctly said, “Green!” Afterward, as we walked into the house, he wanted to go into his room. He sat down on his bed, then lay down and pulled his feet up onto the bed. When Letha told him it was time to walk more, Ross said, “I don’t have a body.” I held up a mirror so he could see his body. Then he said, “Currently, I’m a face. That is the only thing.” He did stand and walked some more. It seems that demanding physical exertion drives his verbal advances. We have to be careful though because if he becomes too exhausted, he becomes more confused. Yesterday’s therapy was exhausting and we noticed that he was more confused for the next twenty-four hours.
Last week I bought Ross a couple of 100 word jigsaw puzzles. When I sat with him to work on the first one, I took out the straight edged pieces and set them up so we could put together the border. I was amazed that he was able to spot two pieces that fit, not just once, but five or six times. He also kept explaining, “Mom, Mom” because as we were completing the border, it was obvious we didn’t have all the pieces. Over the next two days, he continued to show that he can see shapes that fit together.
After his LENS session last week, we stopped on the way home to get coffee. We hadn’t had an outing like that in a long time. We went to a small shopping center that has a nice courtyard. We started with a latte (soy because he is lactose intolerant) for Ross. He was very happy to be drinking his coffee, and he wanted ours when he finished his. There was pizza shop, so I ordered pizza. Ross loved it and there were few outbursts. I did have to move him away from the table when he finished so the aide could have his pizza. It was so much fun and I decided to do it more often. While we were there he looked at the newspaper, said “Michael” and then spelled the word. This week, I sat down to read Dr. Seuss’s Are You My Mother? Ross started reading some of the words out loud and was obviously reading each page from left to right. We have continued to read it each day. Yesterday, he read some of the book out loud; some words were clear, others were word salad, and for the others his tongue was moving. Tonight, his reading was stronger and he continued to read each page from left to right. So I have started digging through boxes to find appropriate children’s books for this wonderful new development. Just as I was beginning to despair that Ross, the voracious reader, might never read again, it is happening. God is good! Onward and upward!
June 3, 2009--Today is the 7th anniversary of the day Ross's life and the lives of his family were forever changed. I just received an update from Betsy:
Today, June 3, is the seventh anniversary of that terrible day when Ross's life was changed. We keep hoping that remembering won't hurt as much and that we will forget the details. Rusty and I have been feeling the anniversary blues for the last few weeks. It started earlier this year because Ariel was hit head on by an inattentive driver while she was driving to an early afternoon class on a suburban street on May 11. Miraculously, she walked away from the crash, although her car was totaled. She has been very brave, but it has been hard for her and us. In fact, the day after her accident, I was talking to Rusty on the phone about how Ariel was in pain and very upset. I heard Ross who was sitting behind me make a strange noise. I rushed to him and saw that he was sobbing and it lasted a long time. I remembered how he used to worry about us being okay, so I explained that I knew he was worried about his sister and she was safe. I held him until he was calm.
As we have learned in these last seven years, blessings are always mixed in with the hard issues of life. That Ross was aware of my phone call and Ariel's misfortune is an indication of his increased cognitive functioning, understanding and his increased interaction. As always, I think a description of what Ross says and does provides a good picture. He seems to be accelerating in the area of cognition and language. I see this in his communication skills, his use of language, and his increased memory and insistence on routines. Finally, he is still advancing in walking, rolling to his side, and doing what he is asked . A few weeks ago, Ross asked the Occupational Therapist, "How am I doing?" This was a first, another BIG event. It showed introspection and concern for her opinion.
Today Ross was pedaling, seated in his chair with his feet strapped in the pedals on the bike. Ross pedaled for a while, then stopped. We told him to pedal a little longer. Ross pedaled for a while, then he stopped. Jeremiah asked, "Are you finished." Ross nodded affirmatively. When Jeremiah did not immediately move, Ross said, "feet, feet". Jeremiah asked, "What do you want me to do with your feet?" Ross responded, "Untie my feet!" meaning unstrap my feet from the pedals.
Another time, Ross was trying to communicate what he wanted with gestures. When we didn't understand, Ross said, "You don't have a head!" It was a very symbolic way of saying, "You don't understand."
Last week we were driving by a McDonalds on the way to an appointment. Ross pointed to the sign and said, "Mom!" I asked if he wanted to eat at McDonalds. I then launched into a one sided conversation about how we used to stop somewhere else for hamburgers. We went to our appointment and did not stop at the Mexican Restaurant for enchiladas (something we frequently do). When I pulled up to our house a couple of hours later, Ross became agitated, saying over and over, "Mother, Mother, Mother!" The only explanation I have is that he thought we were going to stop for food, which means he had to remember the earlier conversation or linked Mexican food to going to the chiropractor.
Today, I heard Ross calling me, "Mama, Mama, Mama!" I went to his room and Ross said to me "You are my mother?" He also now expects me to sit beside him to watch the TV show Jeopardy. For example, tonight I was sitting close by, but he again started saying, "Mother, Mother" until I came over to sit next to him.
Last week, Ross started walking, holding the bar with his right hand and Letha's hand with his left hand. It was amazing to watch. However, this week at his next session, he was tired and confused and just couldn't put it together. As he was seated after one extremely difficult trip across the room I decided to show him the pictures I had taken during the previous session. He looked at the pictures in the camera and ,as I pointed out how he had walked the previous week, he started to move each leg as if walking and to move his shoulders in like fashion. It was wonderful to watch because he obviously understood what I was saying and remembered what he had done a few days before.
We have given Ross something new to do and he is enjoying the change of pace. We have a magnetic white board with letters and magnets and, with direction, he places them in order, moving them from one spot to another and using his left hand some of the time. We are thrilled and we think Ross is self aware enough to also be thrilled with his progress.
Finally, the third annual Ross's Epic Hill Climb is this Saturday, June 6. For information and to register, go to http://www.bikemonkey.net .
Onward and upward!
Freelance author David Darlington's 2008 Bicycling story about Ross, Jill Mason, Alan Liu and Danny O'Reilly has been nominated for a National Magazine Award in the category of Public Interest. Together with the feedback reported by Christine Culver, Andy Clarke of the League of American Bicyclists, and the editors of Bicycling, the article is continuing to help shed light on our society's inattention to the vulnerability of cyclists.
April 30, 2009: 44th Annual National Magazine Awards Winners Announced!
Congratulations, David!
Read the article
Beating out articles from Newsweek, Vanity Fair, Mother Jones, and Business Week, Bicycling's "Broken" won the 2009 National Magazine Award for Public Interest in a ceremony at New York's Lincoln Center.
May 1, 2009--It's been awhile since Betsy's last update, so there is a lot of news in this one:
Writing an update has been on my mind for weeks. Unfortunately, my resolve to sit down and write is continually pushed out of the way by day to day routines that cannot be ignored and by the need to nap in order keep going.
As I reported last time, Ross is again making very clear progress.
On Easter Day, we had a houseful of friends with whom we gather for holidays. Our friend Gerri kindly provided the dinner. Rusty wanted Ross to walk down the hall to the dinner table. With Rusty on one side, and one of our aides on the other, Ross had us in tears as he, standing tall, moved first one foot and then the other, beautifully transferring his weight with each step. I had decided it was safer to have him sit in his wheelchair because if he became combative (thanks to his brain injuries), there would be no chance of tipping his chair over. As usual, Ross loved the food and ate it almost as quickly as I could cut it and put it on his plate.
Everyone was amazed at how much food he ate. Finally, when he had eaten dessert, he became agitated because I wouldn't give him more food. As I wheeled him away from the table, I was glad he was already in his wheelchair. After we put him in bed, he was a happy guy with a full tummy and a dreamy look on his face.
Ross has continued to progress in motor skills: he pulls himself to standing using the transfer pole, is walking with assistance, and is beginning to walk with a walking stick. His cognitive progress has accelerated. He continues putting puzzles together. Two weeks ago when I gave him an alphabet puzzle, he amazed us by completing it right away. When he isn't interested in working the puzzle at his table, but instead is watching me at work in the kitchen, we encourage him to work by putting one of the puzzle pieces in the wrong spot. He will then correct the placement and work the puzzle. Some of the pieces look the same on both ends (for example, S), but will only fit if the smaller side is on top. I have discovered that I only have to say, "Ross, I think you need to turn it 180 degrees" and rotate my hand in the air. Ross immediately corrects the placement by rotating the puzzle piece. Yesterday, before dinner he worked all seven of his wooden object puzzles (excluding the alphabet one) in fifteen minutes while he waited for dinner.
We had an interruption about ten days ago. Ross was doing well and had a great evening laughing and cracking jokes. The next morning he slept until nine, and then had two large seizures two and a half hours apart. When I took his underarm temperature, it was 101.8. I knew the seizures could be because of the fever, but why the fever? He was definitely not feeling well and Rusty and I, after conferring with the neurologist, decided to take him to the Emergency Room. The doctor ordered tests and did a CT scan of Ross's head. We were devastated when the doctor said, "It looks like either fluid on the brain or an infection." They then did an MRI, but had to keep sedating Ross to keep him still enough for the procedure. Rusty, Ariel and I were becoming really worried. The doctor wanted to transfer Ross to UCSF, but UC did not have a bed available. In the meantime, we were also waiting for a bed at the hospital in Santa Rosa. Finally, at 2:30 A.M., twelve hours after our arrival, Ross was taken to a room adjacent to the ICU where he spent forty-four days in 2002. We were relieved to finally have a room.
Rusty came home to get some sleep and I sat in a chair by Ross's bed through the night. I am grateful that I was able to be with him the whole time, both in Santa Rosa and San Francisco. He is so easily confused and agitated that he needs one of us to mediate for him and to calm him by our explanations and presence. Ross was started on IV antibiotics in Santa Rosa. Finally, on Thursday night, two days after going to the ER, Ross was transferred to UCSF. When we arrived on the neuro floor around midnight, a resident came to see us. He was familiar with Ross and promptly went off to compare the scans we brought with the ones on file. He returned half an hour later with the wonderful news, "There is no change." What the radiologist in Santa Rosa saw was scarring from the previous infection and the shadow of the prosthetic bone flap. In addition, he said, "Ross is looking a hundred times better than he did last year. He said they would keep him a while for observation, but much to our relief, at 6 P.M., we were told that Ross's neurosurgeon said Ross's cultures were clear and he could go home. We were very happy as we brought our tired guy home. I don't think anyone was happier to be "going home" than Ross. In fact, he had become petulant on Wednesday when I told him we could not yet go home. He had turned his head, refusing to look at us, and pouted.
I was impressed the whole time with Ross's ability to control his fear and alarm as I explained what was happening and coached him. For example, "Ross, this lady is going to take a blood sample. Show her how well you keep your hand still and watch." Ross would sit still and watch intently. He even sat still for a chest x-ray.
One last story! Ross surprised us all when we went to his LENS treatment yesterday. He sat quietly as the practioners attached the sensors to his ears and to different spots on his head. She made a point of telling him what she was doing and, before doing anything, she waited until he nodded or made an indication that he was ready. He did not become scared and he even sat through the whole session, about twenty minutes, without having any food to distract him. As we say, this was BIG. Another big event occurred a few minutes ago. Jeremiah put on his jacket, and Ross said to him, "Father, you go home now?" As I sit here typing, I can hear Ross talking in complete sentences to the television.
So, onward and upward! Life is not a bed of roses, but it is very good.
March 23, 2009--Betsy finally had a chance to send me an update--I sometimes wonder when she finds time to breathe!
Well, few things are easy. Just as I was becoming confident that tapering the antiseizure drug Lamictal was not going to be as hard as I feared, Ross did have a seizure. It happened when I reduced the daily dosage by 50mg six days after the previous reduction. The next day brought several partial seizures followed by a grand mal that had two phases. The next two days Ross had head aches, nausea and felt terrible. I determined this by asking Ross questions and he answered with head movements. His neurologist agreed to increasing the dosage of herbs Ross takes to reduce glutamate uptake in the brain (one of the biochemical mechanisms in seizures). This has helped, but I also discovered (another benefit of the internet) that Lamictal is available in 25mg doses, which allows us to taper by 25mg instead of 50mg. This is much easier on Ross, even though we are seeing a small partial seizure within a day of each decrease. Because of this, Ross is staying on each level for two weeks. It will take longer for Ross to be finished with Lamictal, but it is easier for him.
The good news is that Ross's walking and standing is getting better. He is pulling himself to standing by learning to grab the pole with his left hand (he regularly grabs with his right hand). He is crawling and moving his left leg from the hip. All the great work his physical therapist is doing in stretching his legs and hips are increasing his strength and agility. She also has him standing on his shoulders (with lots of support), which is helping to drive the neuronal connections in his brain. He is walking with support, lifting his left leg and putting it forward almost as fluidly as the right foot. He is learning to walk with a walking stick and the support of someone on his left.
In bed, he is rolling with ease when he is in bed, and this morning he turned to his side, almost onto his stomach. This is exciting as progress, but also it is a way he can help himself to be more comfortable or even reduce nasal congestion. Of course, Ross's progress means we need to be more careful in protecting him from falls while facilitating more independence. Once more, I am grateful that we are able to have someone with him around the clock.
The difference between Ross in a confused state and when he is alert is more obvious now. He is communicating more and we have two way conversations. The chiropractic neurologist has told us to expect more outbursts as he gets better. The occupational therapist has told us that the first thing Ross will say may be what is most accessible. I think an example of this is that he will laugh heartily and say, "I hate you!" At other times, he seems to be playing around with linking words. We still hear "I love you!" frequently. Yesterday, he asked me if he could be my husband. There are times when he is laughing, but his eyes are filled with tears. I think that he probably is crying at these times.
His movements are quicker and more precise. He did the first Magneato construction by himself last week. When Jeremiah tried to add a piece, Ross pushed Jeremiah's hand away.
Ross is still receiving LENS treatments. We are pleased with his progress and clearly Ross is improving neurologically. It seems that Ross is almost back to baseline (before the surgeries of 2008). He has not been spelling as he did before, but he is beginning to write again. The LENS therapist has said that if he was spelling before last year, it is still there and is accessible. He also has started to talk about pain, and is able to tell us when he is in pain. Sometimes it is indirect as in this exchange. Ross said to Jeremiah, "I love my head". Jeremiah said, "I love my head too; what is wrong with your head?" Ross replied, "Pain, pain!"
Oh, one last change in our routine. We discovered that Ross was less congested when we ran out of the nutritional gummies (they had a small amount of sugar). So, no more gummies, but after trying different combinations, I am now making little treats that are soft, small and easily picked up by Ross of dates, coconut and almonds. Now with the gummies (as we call them), just about everything I give Ross is home made. I spend a lot of time in the kitchen, but I like knowing just what he is eating.
As Ross is progressing, I feel that our sails are filled with wind again and this will be a better year. Ross is working hard, he is much calmer, and he is happier. And when Ross is doing well, our family is too.
February 14, 2009--I was getting worried and asked Betsy for an update--they've been BUSY!
No, we did not go on vacation. We are busier with extra appointments and more to do. Ross continues to make great progress, both in motor skills and cognitive functioning. There are two good things to report.
Ross's seizure activity has calmed in the last few weeks as we have seen fewer absence and partial seizures. He has had only four significant events during 2009.
On January 16, he had a grand mal that lasted about three minutes, but was less intense than usual. Eight days later, he had another grand mal, but it was very mild. Eight days after that, he had a ten minute absence seizure. It started as usual with Ross staring off to the right, but it didn't progress beyond that. Eight days later, this week, he had a couple of absence seizures. Neurofeedback therapists believe that sometimes aggressive outbursts in the TBI patient are really a form of seizures. Our experience in the last six weeks is that Ross is calmer and experiencing fewer observable seizures and we believe the LENS is partially the reason.
In addition, he is progressing in walking, lifting each foot in turn. Last week, he was practicing standing against the wall and lifting his right foot while standing on his left foot. He also surprised us last week when we were asking him to scoot his bottom back in the wheelchair; he suddenly stood up all my himself. It was exciting to see and a warning that we have to be careful to protect him from falls. He also has started rolling on to his side while sleeping.
This week he has been crawling on the mat and just stood on his knees independently for almost a minute. He then walked on his knees, pulling his left knee forward on his own. Yesterday, we mixed the pieces of two wooden puzzles around the bases. Ross, by looking at the shapes of the individual pieces, determined in which space to put each piece and he did it all by himself. I am including a picture of the puzzles before he put them together.
On Wednesday, Ross had a routine appointment with his neurologist. I have been concerned about one of Ross's antiseizure medications that he started in the summer of 2007. The doctor had hoped the drug, Lamictal, might replace the Tegretol which he also takes. However, even though Ross was taking the maximum dose, his blood levels were never therapeutic. One of the serious side effects is a red rash and over the last four months I have noticed some off and on iffy looking rashes.I had also started to wonder if the staph infection had been potentiated by Lamictal. The doctor took my concerns seriously, examined Ross, and checked the internet where he found a blog on which the writer said she had developed staph after taking Lamictal for a couple of months. So, we are tapering Ross off the Lamictal. I am concerned about the side effects of withdrawal, but Rusty and I believe that it is the right thing to do. Once again, we are thankful that Ross is under the care of a thoughtful doctor who listens to our concerns.
For the last two days, Ross has been happy, calm and more alert. Onward and upward!
January 19, 2009--a terrific update from Betsy:
Ross is doing very well. Despite his cold lasting for weeks, his speech is blooming again. On New Years Eve, while I was trying to use the nasal spray for his nose (sometimes he wants it and other times he doesn't), he became very angry with me. Rusty sharply told him to be nicer to me. When Ross calmed down, he said, "Mother, don't worry. Nothing happened! Father, nothing happened." That level of analyzing and speaking is a new development. Later that day, he started singing, "Boom, boom!"
The next day, he was telling us, "Don't hurt my back! Don't, I'm serious!" We were not doing anything that hurt, but we think he is newly aware of pain he didn't feel before, and he was warning us to be careful. Later he asked me, "Pour me some (coffee)." Then he said, "You just go while I eat my food."
Another day, while trying to convince Jeremiah of something he said,"Father, why don't you trust me? I am the king! Obey me!" A few days later, after his physical therapy session, he looked at the therapist's tee shirt with interest. I asked him if he liked it and he said, "R O X Y", spelling the logo on the shirt. He also said, after scooting himself back in his wheelchair, "I am awesome at picking up my bottom!"
He went to the dentist for the first time in over a year a week ago. We kept having to postpone his appointments because of the various surgeries last year. A dental visit involves sedation, the oral surgeon, the dentist, the hygienist and the surgeon's assistants. Ross surprised me in that he sweetly accepted having no food before the 8:30 AM appointment. He was very cooperative and calm through the whole process of x-rays, being anesthetized, and waking up. He had a speedier recovery than ever before. The only negative of the experience is the deep staining and wear on the enamel that both the hygienist and dentist think is related to the anti seizure medications.
He was very cooperative at his LENS appointment on the seventh, but a week later, seemed to be wary of anyone but Jeremiah touching him. When the therapist compared the brain maps of the two weeks, it showed that there is more activity now. Some areas are showing higher frequency. It is to be expected that he may be more frightened.
Letha, the OT, has been on vacation. Today, she started the session with Ross standing by pulling himself up using the pole. He than leaned against the wall, turning and walking sideways. Afterwards, he walked across the therapy room and back on his knees, moving very quickly. When it was time to do some distance walking, he didn't want to walk so he started to sit down. Letha and Jeremiah let him do what he wanted, lie down on the floor while they protected his head. Letha asked him if he wanted to stay there, or walk to the chair. After about five minutes, he indicated he wanted to get up and he walked to a chair just inside the house. After resting, they had him walking again down the hall to his recliner in the living room. It was awesome to watch because he was lifting each foot and bringing it forward. He only needed help with the left foot for two steps. Letha said it was the best session since before the January surgery last year. When she asked Ross, "What do you think I should put in my notes that you did best today? Should I say your walking was best?" Ross thought for a while, and then he said, "All of it!"
Onward and upward!
December 30, 2008--just received a note from Betsy:
Once again I apologize for how long it has been since the last update. It has been a busy few weeks and we all have been sick for the last week. We went to a Christmas party on Sunday, the 21st. When Ross's friend Jon greeted him, Ross said, "Who are you?" While that response may seem disappointing, I think it really indicates that Ross is now able to speak up, rather than being evidence of regression. Ross enjoyed watching the many little children and, of course, he loved the food. However, after an hour and a half, I could see he was becoming overwhelmed and we left. As we drove back in the dark and rain, Ross watched the traffic intently.
A few nights before, in the middle of the night, Jeremiah heard Ross saying over and over, "Woman, I am not going to die! I will live. I will live." All who have heard this story believe that this goes back to those early days when he was in a coma and we were praying that he would survive. There are many stories of those who remember what people were saying while they were in a coma. I believe that one day Ross will tell us what he remembers.
Since Wednesday, Ross has been sick with a bad cold. He has had a low fever and has been miserable with pain and congestion. He starts out feeling miserable in the morning and then feels a little better as the day progresses. He spent most of today in bed, but when he walked (with help) from his bed to his chair, he started with his left foot and walked bilaterally to the chair, turning completely before sitting. Usually he turns halfway and sprawls on the seat.
Ross has not had a LENS treatment for almost two weeks; we canceled last week because of his cold. I had asked the practitioner what the mapping of his brain showed. What she reported is consistent with a TBI. The dominant frequency is very low, as in the frequency of sleep, but were high amplitude, showing irritation of the brain. At the last session, she briefly gave him stimulation (one second) at one site with the goal of calming his irritated brain. It would appear that Ross's improved cognition and communication is related to the treatment. I am encouraged by the possibility that as the treatments continue, Ross's dominant brain waves will be more normal. Interestingly, the few seizures Ross had had in the last month have been milder, another possible effect of the LENS treatment, as well as a result of the lower ICP made possible by the shunt repair two and a half months ago.
The last year has been very hard for Ross and I have recently realized that we didn't fully understand how invasive the January and April surgeries were. Rusty and I are encouraged that he is regaining speech and we are looking forward to the coming year. Thank you so much for your love and support. Happy New Year to all of you!
December 6, 2008--another great update from Betsy:
Baby, Baby, Baby! Ross woke up this morning with those very clear words. What is significant to me about this is that he and his friend Jon used to have a lot of fun with saying, “Baby, baby”, “Just appreciating” and other short expressions. The tone or context was the funniest part. This morning, Ross said “Baby, baby” over and over and laughing while he said it. Then, “Baby, baby, I need food. I am the king and I need food! You are my mother; I need food! I am a man; I need food!” All of this was spoken softly and with humor, with none of the anger and fear with which we are familiar. He even counted 1, 2, 3, 4, and 5. As he ate his breakfast, his chewing was more controlled and thorough. Yesterday, when he was pedaling, it was not the slow, pedal, stop, pedal that we have seen lately. He was spinning like the old days of training. And for the last twenty-four hours we have seen more smiles and chuckles than in a long time. During his therapy session yesterday, he made significant advances in walking on his knees, standing with his weight over his feet and almost no signs of severe confusion.
So what is different? Well, all of us are thinking it is the result of the LENS neuro feedback session he had on Wednesday. This was the third session (the first two were in September before the shunt repair). We noticed a change then, but the therapist wanted to wait until Ross's difficulty with the shunt had passed. We think that the treatment has helped to calm his brain waves and that results in him being more comfortable and this better functioning. I don't want to make the mistake of oversimplification, but we are definitely looking forward to more sessions for Ross. In the meantime, there is a review of a book about the history of LENS that explains the technique somewhat.
The link is http://www.townsendletter.com/April2008/ltr_white0408.htm . We will keep you updated about Ross's progress. In the meantime, we are grateful that Ross is feeling better and we are optimistic that these treatments will be beneficial. I am also wondering if Ross is going to be treating us again with his wonderful sense of humor and wordplay. Thank you for your love and prayers.
November 21, 2008--a terrific update from Betsy:
As usual, we have been busy. Ross finished the month long regimen of antibiotics on November 4. Thankfully, he didn’t have digestive upsets this time, probably because of the stronger digestive enzymes that he has been taking. When Ross finished the antibiotics, he was able to again take the herbal supplements that have helped his cognitive progress and, hopefully, reduce seizures. Ross is still making great advances in motor skill development, lifting his left foot and moving it forward, almost as well as he moves his right foot. He is rolling around in his sleep, lying on his side. He is also sleeping through the night, possibly because moving in his sleep allows him to be more comfortable. His speech is improving and a few days ago, when he saw a bus while watching television, he said, “Bus”.
When he is driving his wheelchair around in the driveway, he now likes to stop at the car and he communicates that he wants to sit in the car. A couple of days ago, he got a short ride in the passenger seat of Jeremiah’s car. Watching, as he and Jeremiah drove off, reduced me to tears. It was so normal, but poignant because he used to love driving himself. We are so proud of Ross; he works so hard to regain his life. We can see that he is often confused and overwhelmed, which is scary for him.
Yesterday, he had a number of breakthroughs in therapy. For the first time, he stood with his weight completely over his feet, his left hand holding the pole, elbow bent, while he leaned forward to take a gummy off the pole with his right hand. The therapist kept saying, “This is what we have been working for and today he is doing it”. While we were elated with that, Ross and Rusty and I were really jazzed when we got him on the exercise bike. Up until now, he has only pedaled in the recumbent position, seated in his wheelchair. It took three people to get him on the bike, but as you can see in the picture, he briefly settled in to it, as if the memory of all those hours on the bike was evoked. Notice his hands and how they are bilaterally wrapped around the handle bars. It was hard for him, it was uncomfortable because he had not been on a bike for six and a half years, and he was frightened. But afterward, he was ecstatic and he kept laughing and talking. He didn’t even clamor for food as he waited for lunch.
Then, at dinner time, he had a grand mal seizure, eleven days after the last one, and only the second since being released from UC. What is common to both seizures is that they were preceded by exceptionally successful therapy sessions with wonderful breakthroughs. He slept soundly, and this morning is laughing and talking. For now, it seems that seizures are again part of Ross’s life and that his brain is very sensitive to fatigue and excitement. I suspect that he is becoming acclimated to the new lower ICP (Intracranial pressure) since the shunt modification. I am learning more about the chemical part of seizure activity, and over time will be adding in some more nutrients that are supposed to help. Please continue to pray for Ross. We are frequently reminded that Ross is a trailblazer and has come so much further than the initial prognosis. We are blessed and we are so happy to report that his therapists do not see a ceiling on his progress. Thank you for your love and support for our son.
We are gearing up for our annual Thanksgiving celebration. Thanksgiving has always been Ross’s favorite holiday, and this year, he will sit at the table in a dining room chair, not his wheelchair. Happy Thanksgiving from the Dillons!
October 30, 2008--an update and photo from Betsy:
While he is waking up with headaches and is not sleeping as much at night, Ross is having a good therapy week. He still has very definite ideas about what to do. On Monday, he wanted to walk outside, so our wonderful OT agreed. When Ross, with Letha and Jeremiah's support, reached our adapted van, he wanted to get in (without the usual wheelchair) and sit on the back seat. It was hard work and took three of us helping him. He put his right knee on the floor inside the van, then the second one. He was then able to pull himself up on the seat and turn to sit. He worked so hard that he was shaking, but he was also so excited that he turned to Letha, conveying pride in his accomplishment. (I am enclosing a picture I took.) He wanted us to drive, so we took a little ride, about a tenth of a mile. He was very happy. Getting out of the car was easier and he walked back into the house to sit on a dining room chair.
Ross has one more week of antibiotics; then he can resume taking the herbal products that have been so helpful, and hopefully his headaches will diminish. He is also using his left arm more and more. My dream is that he will be able to walk with a walker in 2009. That is a task that requires using his left arm for support and consistent movement of his left foot.
One last example of Ross's coping skills. Yesterday, I gave him a couple of rice crackers that I had broken into pieces. Ross can pick them up with his fingers, but he decided to wet his finger in his mouth, put the wet finger on the cracker and then put the cracker in his mouth. He used that method to consume all of the pieces. Another reminder that so much of what Ross knew and could do is there, but still disorganized.
October 27, 2008 I just received a lengthy update from Betsy:
It does not seem that it has been two weeks since we brought Ross home from his last hospital stay. Not only have we been busy checking discharge instructions, following through on bleach baths twice a week because of a staph colonization acquired during one of his hospital stays, making weekly lab visits because one of the antibiotics for the staph infection interferes with the blood levels of his seizure medication, which in turn messes with his electrolyte levels, and having the sutures removed. Even though we have awesome doctors and a good local lab, I have to follow-up to make sure every loose end is tied. Rusty and I have been exhausted and several times a day I have said to myself, “I am too tired.”
I am sure part of the fatigue is emotional. This has been a very hard year for Ross and for us. The few weeks before this last surgery were terrible because there seemed to be nothing we could do but wait for the shunt repair and we didn’t know how much worse it would get while we waited. When he is having a setback, I tend to panic for a while.
Ross’s recovery is amazing and wonderful and he has come so much further than any of the experts believed could happen. He was doing so well a year ago and then he started to lose part of what he had gained in cognitive function, speech, drawing and writing, while at the same time moving forward in gross motor skills. There have been many times in the last two months when my belief that Ross is slowly getting better and better has been challenged. It is interesting that when strangers see him, he looks so healthy and alert that it is hard for them to believe that he still needs someone to do almost everything for him. But then we always make assumptions on the basis of what we see. I had a brief moment with another mother who was in the elevator with her son. He was about eight and in a wheel chair. He looked healthy and happy, but I noticed that as she stood behind him, she gently held his hand with which he was making hitting motions. I realized instantly that he had a brain injury and I said, “My son does that. He has a brain injury.” She smiled and nodded as they exited. That encounter made an impression on me and I told a couple of people about it. I think the recognition that we both deal with the same problem the same way touched me.
However, and this is the good news! Ross is doing much better-he is talking more, his drawing is controlled and he is writing. One morning he woke up writing in space with his finger. Jeremiah gave him his easel and paper and he wrote eight pages of cursive in mostly straight lines, and line upon line. We were able to identify a few words. He is obviously thinking and strategizing. He can unscrew the gummy bear bottle himself and dump out the bears. He put some nesting containers back together yesterday. He is eager to have us put on his shoes and to walk (with help). Also, while he was in the hospital and now, he sits carefully and watches the technician draw blood from his left hand. I used to have to hold his right hand, but now he becomes annoyed if I put my hand on his right arm.
He still has a temper and tells us exactly what he thinks of whatever we are doing-usually when we are not producing food fast enough or when we remove his plate from the table until he has cleared his mouth. (He likes to take very big bites.) Tonight, I pulled his chair away from the table because he was mad that we were trying to get him to slow down. He was angrily waving his spoon around. I told him he had to sit there until he was ready to stop trying to hit. He was able to pull himself together and smile. The rest of the meal was smoother. Last weekend, he was very agitated so we brought in the blow up plastic dummy made for hitting and kicking. He was reluctant at first, but the he kicked angrily for about five minutes and then he was tired of it and much calmer. I constantly have to remember that we are raising our son a second time, except now he is much larger.
As I was brushing his teeth the other night, it became a hassle. Ross was angry at me for persisting, but when I had finished, he laughed and said, “I love you.” He still enjoys watching children. We always see children walking home from school when we go the chiropractor, and Ross now watches them. Occasionally, one will wave to him and that is a treat. We are looking forward to seeing his friends, Jon and Mel, and their children at Christmas. He loves looking at the pictures of the children.
So, you see that despite my rough moments about Ross, with the shunt repair accomplished, he is getting back to base line. His motor skills are progressing. For example, last night he turned on to his left side for a while in his sleep. While this is something we do without thinking, it is a big deal for Ross.
Thank you for your love and prayers. We could not do this alone.
October 11, 2008: I finally heard from Betsy today--they didn't get home until 9:00 last night, so it was a long day for everyone, but Ross was really glad to be home and slept through the night. Betsy said that he hadn't slept at all Thursday night, but she sat and talked with him much of the night and it was very special--she said it was like nothing that's happened since he was injured, and it was obvious that Ross was not only connecting, but following and participating in the conversation. Friday morning he was feeding himself breakfast, something that really surprised the nurses.
He's got a six inch crescent shaped incision across his head, but it's through the skin only. Doctors did not have to go inside his skull, so this should heal quickly. He's on oral antibiotics for awhile, and Betsy said his sodium levels are still off, but that's most likely because of the way his body is metabolizing the Tegritol.
Ross had to have a lot of blood drawn--four times a day for tests--and he often will fight the process, but Betsy said he was very calm and held still for the phlebotomist and actually watched the process.
It sounds as if adjusting the shunt pressure has made a huge difference. I'm looking forward to Betsy's future updates to see how Ross is progressing now that the pressure has been reduced. Thank you all so much for your prayers and healing thoughts. Your generosity and kindness has made such a difference in Ross's continuing recovery.
October 9, 2008 8:30 PM I just called Betsy and she said that Ross is doing so well that they're convinced the shunt has probably been malfunctioning for months if not years. He'll be going home tomorrow afternoon with a couple of oral antibiotics to take for the staph infection, but everything looks great. Thank you all so much for your prayers and healing thoughts. Your good wishes mean so much to Ross and his family.
October 8, 2008 8:30 PM I just got a call from Betsy, still at the hospital with Ross:
Ross is feeling much, much better tonight, according to his mom. She said the CT scan showed that the ventricle in Ross's brain where the shunt has been placed is much reduced in size since the surgery. Since the shunt has probably been stuck for quite some time, Betsy said it's possible the pressure has been much higher than anyone realized, possibly for many months. She said Ross already seems more comfortable, he's very alert and responsive. A small infection on his leg tested positive for staph, so he's receiving antibiotics to prevent further infection. It looks like they'll be going home on Friday, October 10. Six years ago to the day, Ross was moved from Marin General to Herrick Hospital where he began therapy following his injury, and Betsy's looking at Friday's date as a good sign--it's time to get him back home.
Thank you all so much for your prayers for Ross and his family. You are an amazing source of strength for everyone.
October 7, 2008 9:00 PM: Betsy called earlier but I'm just now able to update:
Betsy finally spoke with the neurosurgeon. He said Ross's CT scan looks good, though he may have to turn the shunt down even more. He seemed to think the seizures were due to Ross's sensitivity to sedation and the changes in the shunt pressure. He'll need to take antibiotics for the infection on his head and they're going to keep him in the hospital until Friday to make sure all is well before sending him home. I forgot to mention earlier that Ross is at UCSF, Moffet Hospital. Many thanks to everyone for your prayers and healing thoughts. Your kindness means so much to the entire Dillon family, but especially to Ross.
October 7, 2008 2:30 PM: Betsy just called me with an update:
Ross was feeling okay last night, though he didn't sleep well at all. Then, this morning, he had three seizures. One was a "grand mal" that lasted ten minutes. Betsy said they're attributing the seizures to the change in shunt pressure. It was stuck for quite some time before surgery and the pressure was much too high. However, even during the seizures, Ross's pupils were the same size, something they've not seen for quite some time. Also, his gaze is steady and normal with both eyes tracking. They're still waiting to hear from the dermatologist about the infection on his scalp and will definitely be in the hospital another night.
October 6, 2008--6:23 PM: Just heard from Betsy:
Ross came through the surgery fine and woke up hungry. Betsy still hasn't talked to the neurosurgeon so she hasn't gotten a report on the condition of the shunt. She did say Ross has another spot on his scalp that they wanted a dermatologist to take a look at, which means he'll probably be one more day in the hospital than previously expected. Hopefully he'll be going home by Wednesday. I'll add more as I hear from Betsy.
October 6, 2008--Ross has his surgery today. Betsy wrote:
This is the day and Ross is sweetly awake and he seems to understand that we are going back to the hospital today. We are up really early to give him his essential meds and now maybe we can nap before getting ready for the day. Please pray for us. We have been anticipating having the valve replaced on Ross’s shunt for months and now it is actually going to happen. I will call after Ross is out of post op this afternoon. Bless you all who are Ross’s cheering section.
September 29, 2008--I just received an update from Betsy--now I understand why I haven't heard from her in so long (and I was out of state, so didn't contact her while we were away):
Ross’s month has been a roller coaster ride. The month started with Ross having a scary grand mal seizure in his sleep at 3:30A.M. This was the first time he had a seizure in the middle of the night. We are grateful that one of us is always sleeping in his room at night. This seizure was part of a troubling pattern we have been watching all year of increasingly more seizures, though less than the two months before the January surgery; more confusion and less speech. As you may remember, the neurosurgeon and we have suspected that the valve on Ross’s ventricle shunt is stuck. The doctor wanted to see if the size of the ventricles was increasing before putting Ross through another surgery. The first post surgery CT in June was inconclusive. The second CT scan on September 8 showed an increase in size. We were not surprised because we have noticed that Ross’s confusion and explosiveness is increasing, and in the last two weeks his vision was worse, the left eye drifting and the left pupil again larger than the right. His hands have become tighter and clinched and he is frequently in pain. We went back to UCSF last Tuesday and they again tried to reset the shunt without success. Ross was very agitated and frightened, but I was proud of how much he tried to cooperate.
The surgery to replace the shunt valve is scheduled for Monday. If there are no complications, he will only be there overnight. On last Friday, we were so concerned about Ross’s deteriorating condition that I called UC to see if they could do the procedure this week. We are waiting to see if they can. I also called our wonderful neurologist to ask if the increased intracranial pressure (ICP) could cause permanent damage to Ross’s brain. His answer was that probably it would take longer than a few months to cause irreversible damage. I also asked if there was anything we could do to provide some comfort for Ross while we wait. He suggested an herb that had been the topic of a lecture he had just presented, Huperzine. I bought a bottle and we started giving it to Ross on Friday night. On Sunday, he was feeling better and we didn’t see any indications of the Absence Seizures he had been having. Today he was even better; Letha, the OT said that it was his best session in a long time.
He started with walking on his knees with only bearing down through his arms to hold their (Letha and assistant) hands; visualize walking with a walker. He walked very fast, and moved both the left leg and the right without help. Later he walked outside (standing), again with support on both sides. He is now taking big steps with his right foot and independent sliding through steps with the left. I brought his old manual chair out for him to sit in. When he was seated, he started to travel using his feet to move him along. He would bring his right foot forward to more the chair, then put the right foot back next to the left foot and bring both feet forward together, and then repeat the process. When he came inside, he moved to the table, reached out and grabbed the edge in order to pull himself forward. When he encountered a table leg, he used his right foot to move the left foot to the left of the table leg, and then put his right foot on the other side and moved his chair to the edge of the table. Once again, he is showing us that he is thinking and planning, even though he can not yet talk about it.
He is definitely feeling better; if we have to wait until next week for the surgery, at least he is more comfortable and less vulnerable to another Grand Mal. It is definitely scary when I can’t remember how many seizures he has had in ten days without checking my notes. However, I am reminded of my mother saying when I was a girl, “It is always darkest before the dawn.” Thank you for your prayers.
August 31, 2008--I just heard from Betsy:
Well, something has clicked for Ross. I don’t know if it is because three months post surgery is an important interval, or the new herbal supplement the neurologist prescribed is kicking in, or if it is the extra niacinamide I started giving him after learning that it helps with balance and is an excellent antioxidant. Or then, maybe it is all of them or none of the above. Ross is much happier: he smiles more, he is laughing again, he is moving his shoulders in that wonderful way he has, alternately lifting each shoulder as he smiles and rolls his head. He is also talking again. Twice in the last week, he has said, “I am happy.” He also, told Rusty and me at separate times, “I love you.” This afternoon, he was happily eating his afternoon snack and smiling. He said, “I am always hungry! “ And he also asked me, “Are you my mother?” We haven’t heard this level of speech since before the last surgery. As I read over the entries from last year, I realize his speech was so much more advanced before the first surgery in January and we are thrilled to see the positive changes..
He is also continuing to kick the ball with his left foot. Last week, he kicked forty times in one sequence. Two days ago, we had him kicking. As I was watching him, I was aware of the effort required to send the message to his left foot. We could see him trying to remember how to do it. It is so easy to forget how hard it is for him to do things that we take for granted. Later, I tried a cognitive exercise with him. It involved identifying matching two of four letters on a page. It took a while, but he finally did it. When I gave him another page, he was distracted and looked at the page without comprehension. I didn’t give up, but walked away for a while and then returned, quietly asking him again. After ten or fifteen minutes, he finally accomplished it and, for me it was a demonstration of something I have been learning. In watching him, it seemed that he was so agitated that he couldn’t process the information in front of him. As we calmly spoke to him, walked away, came back, gently encouraging without pushing, he was able to calm down and look at the letters.
Rusty and I have been reading about neurofeedback and its use in helping people with brain injuries. The injured brain, at least from this perspective, has brain waves that are not normal. For example, low frequency, high amplitude (voltage) brain waves can destabilize the brain and trigger a seizure. One writer has likened this to the conductor of a symphony being incapacitated and the chaotic music that ensues. We became interested in neurofeedback after two families told us that their brain injured sons have been helped by neurotherapy. If anyone is interested, a good introduction is A Symphony in theBrain by Jim Robbins. We are exploring the possibility of this therapy for Ross. Certainly, just reading about it is helping us to understand day to day life with Ross.
We had an interesting experience at the chiropractors this week. A man introduced himself to Ross. I told him Ross’s name and started to tell him how Ross was injured. Ross quickly turned to me and said, “Oh, Mom, don’t tell that story now.” Times like this encourage me.
Ross’s thirty-second birthday is a week away. We will celebrate with a family dinner and birthday cake. We hope to be able to post a video/slide show on the internet soon. We will let you know when it is up. Thank you for your prayers and support. Onward and upward!
August 11, 2008--a note from Betsy:
Just a quick note since it has been a while. As usual, we have been extremely busy. I wrote in my log on July 31 that Ross has been so tired, particularly after PT on Tuesday and Wednesday. His therapists were pleased with his progress, but his fatigue was scary. A cognitive training program that I have been interested in was on sale and I took advantage of the lower price and ordered it. That evening, I sat with Ross at the computer to show him a video of another young man with a TBI who has made great progress and used the program. Ross sat with his head down, not looking. As the video played, I talked to him and said he could learn to do these things. He shook his head for “No!” I kept talking, and he finally looked up and started watching. He even smiled as I talked about him doing it and then lifted his shoulders alternately, something he does to show enthusiasm.
In talking to Rusty, we realized that with the stress of the last six months, we mainly stay home and do lots of therapy. He is doing extremely well with gross motor skills but he had regressed in cognitive work. Realizing that he was bored and resigned to his fate, I decided to add in more fun. The next day we had lunch at Murphy’s Irish Pub, where Ross had worked for a while. He had a wonderful time, eating, gesturing and calling out to other people.
Now, two weeks later, he is doing much better, except for the first grand mal in almost two months last Tuesday. However, he is smiling, drawing intricate pictures again, writing and enjoying the Olympics.
July 27, 2008 A note from Betsy:
The last two weeks have been much better for Ross. His digestive system seems to have calmed down. Since the lab tests were normal, I think that it is because the new enzyme regime is helping. I need to spend some time determining what the next step will be. There is a product that is specifically designed for reduction of mucus (i.e. nasal congestion), but I want to go slowly. Ross is less volatile and he actually seems to look forward to therapy (exercise). The OT started having him walking on his knees between the parallel bars two weeks ago. It is exciting to watch as Ross moves first his right knee forward and then the left with his hand on the bar. Sometimes we have to provide just a little lift on the left shoe to overcome the friction, but more and more he does it all. He started out walking one length, about six feet. Yesterday, he did five lengths.
Ross is also talking more often and, of course, it is frequently about food. Rusty’s tomatoes are ripening and Ross enjoys them immensely. I chop them up and he eats them with a spoon. It is also raspberry season again and he is starting to prefer a spoon for eating them because they are slippery between his fingers.
Last weekend I noticed that the pupils of both eyes were consistently the same diameter. That is the first time since he was hurt. That has pretty much continued, but I notice when he is tired or confused, the left one is again larger than the right. Yesterday, I even noticed that both eyes seemed to be tracking together. Ross stared at me when I asked if he was seeing one or two. As I write this, I realize I was moving too fast and should have asked only one question. For example, “Do you see two of me?"
I have saved the best for last. Yesterday, the therapist had Ross stand against a wall without support. He did it four times then. Today, he did it again. Rusty and I are so excited and Ross is very proud of himself. This is a huge accomplishment.
If you are on our mailing list, look for the new letter to arrive soon. The photographs of Ross enable you to see the changes. We are so grateful for his progress. Thank you to all of you who make it possible. Onward and upward!
July 11, 2008 An update from Ross's mom:
We have been very busy with visitors, appointments and life’s unexpected glitches. Ross’s sister Liz and her family were here for a week. Initially, Ross was very quiet, and Liz was saddened to see that Ross was not as responsive to her or as verbal as he was in December when she was here. However, Ross delighted in the children and laughingly watched them. The children played ball with him, accompanied him as he drove outside and stacked cones with him. He occasionally became agitated and showed it. It was upsetting for the children, and I was able to say that it makes me sad when he reacts with anger and fear too. We all recognize that it is not personal, and it is another example of how this tragedy as affected all of us. However, their experience was mostly positive. And Ross, told Liz, “I love you” just before she left.
Ross’s digestive system appears to still be recovering from all the antibiotics. The doctor is doing some tests, and we are waiting for the results. I have been able to find some books on digestive enzymes and I have slowly increased the enzymes Ross takes before each meal. It has made a difference and I think it is making a difference in his cognitive functioning. For anyone interested, the author of the books I have is Karen DeFelice. The one I really like is Enzymes for Digestive Health and Nutritional Wealth. Her web site is www.enzymestuff.com . I am realizing how critical enzymes and the digestive system are for all of us, but even more so for the neurologically challenged.
Ross’s progress in therapy is wonderful and his therapists are very pleased. He is walking on his knees, moving himself around on the floor, climbing on to the therapy table from the floor and rolling from his back to his side in bed. While his motor skills are progressing, he still isn’t talking as much since the last grand mal seizure on June 10. When we saw Ross’s neurologist yesterday, he suggested that Ross might be thinking more and, as a result not speaking as much. It does seem that he is more thoughtful and he does communicate his desires. Another thing I noticed is that he is not constantly asking for food. We have gone to church the last two Sundays and he didn’t ask for food either time until the very end. Before, he would have been agitated and asking for food from the beginning. He is also actively reading printed material. The doctor handed me some information yesterday, and Ross spent a few minutes looking at it as if he were reading. One other thing, the neurosurgeon said that the last CT scan on June 20th showed smaller ventricles. That is a great report. We have always been told that they are big, because of the injury related damage to his brain. But Rusty found a report online that indicates that on a scan, large ventricles because of hydrocephalus can’t always be distinguished from large ventricles because of damage. Rusty and I feel that Ross is on an up slope again. Onward and upward.
June 15, 2008 (I'm posting this from Montana--just received an email from Betsy with an update. Wifi is EVERYWHERE!)
You may be on the road again. I received your e-mail in the midst of making a birthday dinner for Ariel. Ross enjoyed the card
Ariel. I had found a Mary Engelbreit file folder that was so like Ariel when she was a little girl and I typed up a verse about Ariel
inside. He laughed when he saw the folder, and instead of writing his name on the inside, he drew a decorative line around the the whole verse.
Later he watched the movie "Hairspray" on television. I went in and sat with him and he laughed continually at the movie. At
and looked at me as if to say, "Isn't this outrageous." It is so wonderful to have his laughter back.
Last week at the Hill Climb there was another little toddler, just like last year. Ross loved her and laughed with joy as he watched her. At one point, her mother lifted her to see Ross, and Ross asked, "Are you a woman?" I think that was an example of his difficulty in retrieving words. He was thinking girl, but woman is what came out of his mouth.
His speech skills have been better until last Wednesday when he had another grand mal seizure. This time, articulate speech is slower to return. However, he is doing well with crawling with the therapist and standing on his knees. We are also back to having him stand for a half hour several times a day. We are hoping that getting back to standing a lot, something we couldn't do while the bone plate was missing, will help his brain to send signals to his left foot and leg about the correct position. The orthotics that he wears have been rubbing and creating blisters. Ross saw a very good podiatrist last week, who pointed out that that the problem is that Ross's ankle keeps turning. There are surgical solutions, but we are committed to using weight bearing and positioning first. There is also the question about the shunt. Too high pressure inside the ventricles can interfere also. So, I will call and start the process of securing an appointment for a CT with sedation. Comparing a new CT with the previous ones will help the neurosurgeons determine what is going on.