Updates from Jan. 1, 2006--May 31, 2006
beginning 6/1/05
If you would like to receive the "semi-regular" mailing that Ross's family sends out, please send your
"snail mail address" here:[email protected]
The August 2005 update letter is now posted here. It will give you a comprehensive view of Ross's overall recovery.
To send "snail mail" notes to Ross:
Ross Dillon
PO Box 1509
Glen Ellen, CA 95442
Over my Head,
a fascinating look at TBI written by
Claudia Osborn
Flooding: Flooding is being overwhelmed by one's emotions. One can be unaware of the emotional overload, and outsiders may not discern anything amiss. To quote Osborn, "...thought processing slows, and thinking, language skills, and actions may be severely impaired...may be triggered by...the awareness of one's own confusion, a sense of helplessness, the pain of one's loss of self." Claudia Osborn, Over My Head, p 236.
May 29, 2006 9:40 PM--Rusty and Betsy have been away for a couple days at the wedding of one of Ross's friends back in Boston. I called tonight for a brief update. Betsy said Ross seemed subdued and wasn't talking as much. She's not sure if it's because he's upset they were away or merely something as simple as the fact he's very congested with allergies. Everything appears to have gone well in their absence, though, and Ross continues to show improvement.
May 24, 2006 11:30 PM--I talked to Betsy earlier but just now getting to posting the update. I asked Besty how Ross did after the party on Sunday and she said he was fine. When they left Sunday evening, Betsy said Ross seemed very sad, as if he recognized that all his friends had moved on in life. He was definitely fascinated with Jon and Melanie's 3 1/2 month old daughter Ella, and gave our other granddaughter, two year old Gracie, a big smile. I hadn't seen Ross in quite some time and couldn't get over how much better he looks. He's very alert and seems interested in everything going on around him. He was definitely interested in my digital camera, though I do think the large crowd of people and the noise was beginning to bother him by the time they left.
Thank you all so much for your continuing support and your prayers for Ross. It's amazing that even now, almost four years after his accident, he continues to show progress. This is not a journey he could have ever taken alone. Thank you.
May 22, 2006--A note from Betsy:
Ross had a good week. He has been quieter at times, but when he speaks, he is saying something important like, "I didn't do anything wrong." We have been telling him the last four years that his being hit was not his fault; he did nothing wrong. I have been telling him that a lot lately when he seems distressed about his dependency. He also said, "I am in my own home." He now is nodding yes when I talk about Boston, where he was living until one month before his injury. Always before, when I asked if he remembers living in Boston on Beacon Street or if he remembers his friends who lived there, he has shaken his head for no. Just in the last week, he is nodding yes. We saw his friends Jon and Mel and their baby yesterday. He seemed to understand, but he was a little overwhelmed by all the people who were there and didn't speak.
He is eating well, and when we saw the speech therapist, she remarked on how well he was doing. At the barbeque where we saw his friends, he ate half of my hamburger with the bun. We had given him a hamburger without the bun first, which he ate, then he enjoyed sharing mine. He had his electrolytes tested last week and his sodium levels was the highest yet, right in the optimal range. I truly believe that Ross's supplements are helping him to maintain progress.
May 15, 2006 8:50 PM: I just made a quick call to Betsy before shutting down until next week and she said Ross had a terrific day. He was talking, laughing and smiling.He spent about an hour on the mat and was able to extricate himself from different positions. All in all it was a nice day and he continues to show amazing progress, even four years after his injuries.
May 15m 2006: <From Kate: I will be away until May 21 attending a conference. There will not be any updates during that time and I do apologize, but I won't have computer access while I'm gone>
A note from Betsy:
Sorry I haven't gotten back to you. I have been swamped because we didn't have any help from Saturday noon until eight last night. The Sunday night person left at 6 A.M. today and now Jeremiah is sick, so we are on our own till tomorrow. Ross is doing really well. He was lying on his stomach on Friday, and came up on his knees with his bottom up in the air. I will put him on the mat on the floor later today so he can experiment with that action . He is saying many more things. For example, Jeremiah was taking off Ross's new boxing shoes (they provide more support for walking), and Ross looked at me and said, "Tell him to stop."
Yesterday, our friends were visiting, and one of them was doing the mirroring movements we do with Ross, but much more intricate and he kept up with all of it. We have been praying for cognitive gains. Ross is making them, along with more experimentation and assertion. Just as he did when he was a baby, he likes to drop his cup. I try to make sure it doesn't have water in it. After dinner last night, we were sitting around, and he put his foot on a table. The problem was that there was a glass of wine in the way. So now, we need to child proof our house and our thinking again. All of these are good gains, and make us think more about consequences. Hard work for everyone and it is definitely producing results. Just as our first physical therapist kept saying, the key to rehabilitation is ENVIRONMENT, ENVIRONMENT, ENVIRONMENT!
May 12, 2006: A note from Betsy:
Ross had a good day on Thursday. He is now getting more wrist action in hitting the ball with his plastic bat and he is hitting it with a wallop. I gave him noodles with meatballs yesterday and gave him a fork to use for eating. He was able to feed himself for a while, lifting a forkful of noodles to his mouth. He also spent time experimenting with his fork and actually got the tines caught in the handle on the tray. When we went to see the acupuncturist, I gave Ross the thumbs up sign and for the first time he gave me a perfect thumbs up. When the needles were being put in, he was very talkative and patient. When Jeremiah was pulling him up in his chair, Ross said, "Watch my head." (The needles stay in for three days.) We came
home and Ross pedaled on the spin bike, but was very quiet. He continued to be quiet, not even asking for food. I know he was tired after dinner, but he also seemed sad. We decided to give him his bath early, I read to him, and by the time Lisa arrived, he was falling asleep.
There is another new behavior that I haven't mentioned. When we are feeding him, he will stop eating and tell us to eat some of it. Also, he really is helping with sit to stand transfers.
May 10, 2006: A note from Betsy:
Ross had a pretty good day. The OT was very pleased. He said he has never seen anyone who keeps getting better and better this long after the injury. Ross is getting more control on the left side. Now that he can move his left arm up to the armrest, we need to work with that arm to make sure that he maintains flexibility in the elbow. Last night when I worked with him, his bicep was pretty tight. However, that could be because he was in pain. We noticed that his jaw was swollen and he was complaining of pain. I went exploring, thinking it was a tooth and discovered four canker sores on the inside of his cheek. It has to hurt terribly. The pharmacist suggested an over the counter medication which we applied. He was feeling better later. It is just so hard to see him have to deal with all this. We need people's prayers as much as ever as Ross improves, life is harder in some ways.
May 8, 2006 9:20 PM: Just got a note from Betsy:
We are back and Ross is happier. Both Jeremiah and the physical therapist told me they thought Ross was blue while we were away. Yesterday, he seemed somewhat subdued. Today, he had a different air - more independent and stubborn. We took him to buy high top shoes for ankle support. It was our first excursion for buying apparel, something Ross has always enjoyed. He loves his shoes and when he stood for transfers and was in the walker, they seemed to help. He did the best ever. He moved himself backward and forward by moving his right foot and dragging his left. When Jeremiah transferred him from the recliner to his chair, he said he could tell Ross was pushing down through his legs.
May 4, 2006: Betsy and Rusty are away this week but still sending in updates:
Rusty brought his computer and I wanted to tell you about last night. I received a message from Ariel saying Ross was blue and didn't even want to eat ice cream for dessert. She suggested I call. I had said goodbye to Ross about four hours earlier. I had been telling him we were going to be away. He didn't want to look at me when I said goodbye. Anyway, when I called, I told him I was calling to say hi, told him a little about where I was, and told him I love him. He said, "I love you" and some other things I didn't understand and Ariel didn't either. But she said he got a big smile on his face when he heard my voice and then started looking around the room to find me. When I talked to her later, she said that he was happy the rest of the evening. I think that this means he has a significant short term memory. Another one of those encouraging signs.
May 3, 2006: A note from Betsy:
Hi Kate,
I will be out of town until Saturday.
Ross was very tired yesterday, but he worked anyway. He had a good occupational therapy session and pedaled for a while on his new exercise cycle. I was looking at his writing from yesterday and he was tracing his name and the first four letters of the alphabet. He has become very adept at picking up a little nutritional Manna Bear between his thumb and index finger and putting it in his mouth. This beautiful weather with the high pollen count is making all of us very congested and it is especially hard for Ross.
May 2, 2006: A really great note from Betsy!
I remember I was concerned about Ross's quietness. Well, I think it was a rest before a breakthrough. He has been talking to me in multiple sentence thoughts, only a little of which I understand. One day, he was saying that he loved me when he was a kid, and now years later, he still loves me.
On Saturday, Rusty was playing with him in a teasing way and Ross said, "Stop fooling around. Why are you messing with me?" On Sunday, as he was eating, he said, "Talk to me (while) I eat." He has also been telling me to go home when he is in bed and tired. Yesterday morning, at 5 AM, after some food and his medications, when I usually read a psalm and pray with him, he said, "Go home." He immediately fell asleep when I turned off the light. Rusty sees this as a big growth step with Ross, a form of individuation that children go through. I remember when Ross was a baby and the first time he toddled off to a different room and played for about fifteen minutes by himself. This seems analogous, but Ross can't leave, so he asks us to. He also refused to let me take off his splints during the night, so he wore them from 9:30 PM until 8:00 AM.
On Saturday, he was sitting in the recliner and we had put the foot rest up. I noticed that his left leg was moved to the side of the foot rest and his left foot was flat on the floor. About twenty minutes later, both legs were on the foot rest and his right leg was crossed over the left leg. I immediately wondered if Rusty had repositioned him, but he hadn't. Ross had done it on his own. He even demonstrated part of the move for us.
He had a small partial seizure yesterday. He had been on the total gym. It took three of us and he seemed really pleased to be using his legs. He also had been more toney for the last week. As soon as the seizure was over, he was again interacting. It certainly fits with our theory that his seizures are frequently neurological breakthroughs. We certainly don't encourage them and I find them scary, but it helps me to have a paradigm that sees them as part of his growth.
*My apologies for not updating for the past few days. I was out of town and had hoped to be able to continue updates from my location, but discovered too late I'd not loaded the web program properly.
April 29, 2006: A note from Betsy:
The podiatrist was so pleased with Ross's progress in the last month in terms of more flexibility in his left ankle that he decided to wait another month before casting the orthotic. We told him about how Ross can now lift his left foot and Ross demonstrated it for him. We need to remember how much Ross likes to demonstrate his accomplishments.
We did part of his occupational therapy session in the standing frame on Thursday. It obviously is good to have another opportunity to stand, but he also gets a better angle for using his arms, wrists and hands. We bought some very cheap remote control cars a couple of years ago and they have never worked. But they have a new life as occupational therapy tools. We strap a car (with padding on the roof and hood) to Ross's hand, and he moves his arm forward moving the car to knock over those wonderful cones that have been so useful. The beauty of this move is that the elbow has to bend to move the car back into position for the next run. Ross progressed from having his elbow moved by the therapist to doing it himself within fifteen minutes. He probably knocked 50 cones over.
In physical therapy, he stood for about five minutes, with the therapist and three others supporting him. This is harder than for him to stand in either the standing frame or the walker. When he was in the walker yesterday, he moved his left foot forward on his own.
On the language front, when Jeremiah was excercising his legs, Ross said, "Go home and come back tomorrow." Yesterday, when we were all gathered around, (it takes four of us for some of the physical therapy) he said, "Everybody go home except my brother." He sometimes asks Jeremiah if he is his brohter. More later. Betsy
April 26, 2006 9:10 PM--Just received a note from Betsy:
Sorry I didn't get back earlier. This was another busy day. Ross was able to sleep after breakfast, which was good because he seems subdued and quiet. He is doing well with eating and therapy exercises, but he seems a little flat. I know from what he says that he is feeling embarrassed about being so dependent. I can't decide if he is regressing, before the next big step forward or if he is depressed. Tomorrow, he is being fitted for the orthotic for his left foot, ankle and leg. I hope to get him outside more now that the sun is poking through the clouds.
From Kate: I will be away for the next five days, but I'm hoping to be able to keep doing updates. However, if I don't get anything up, it's because I couldn't figure out the technical side of loading the website from a different computer.
April 24, 2006 9:30 PM--Betsy said Ross did really well at speech therapy today. The therapist was very complimentary over his ability to move food around in his mouth and the control he has gained. However, by tonight Betsy said Ross was totally snowed and couldn't even blow out a candle, but then we all have days where we're not 100%. However, as Betsy said, for a mom who wants constant forward progress, it's tough. All in all, though, it was a pretty good day. He was less congested and not having as much trouble with allergies. Betsy seemed to think that was due to some homeopathic and herbal remedies suggested by the accupuncturist.
It's been almost four years since Ross was first injured. He's come so far, but he still has such a long way to go. Please remember Ross and his loved ones in your thoughts and prayers. Thank you all so much for your support.
April 23, 2006 7:40 PM--Just a brief update tonight. Betsy said Ross is doing well and talking a lot. They've had a quiet three days without their regular caretakers. As Betsy said, spring break appears to have interfered with their schedule quite a bit!
Some of the things Ross said include: "Can I please go back to my room?" "Thank you, my father," and "I have always wanted to be at home."
Thank you all for your continuing support of Ross and his loved ones.
April 21, 2006 9:20 PM--Betsy said she took Ross to the grocery store tonight and he was a bit overwhelmed, but it was a good experience for him. When they got home, she said they played with puzzles and Ross wsa like a little kid, matching pieces to their indented places. Later she said they had some bagel chips, and when Ross dropped them, he was able to pick them up again. Betsy said I should post: Ross loves food and he's learned how to pick it up!
One request--if you were a friend of Ross's before the accident and have any photos of yourself with Ross, would it be possible to send a copy to the Dillons? Ross is remembering more all the time, and photos help to jog his memory. Send copies to:
Ross Dillon
PO Box 1509
Glen Ellen, CA 95442
Thank you!
April 21, 2006--A note from Betsy:
Ross had a very good day yesterday. He did very good work in Occupational Therapy and was much happier. We made another move in the Klonopin withdrawal program. I substituted the equivalent in Valium for 1/4 mg Klonopin. I think that they may have precipitated mild withdrawal symptoms, very sensitive skin and agitation. Today, he woke up laughing and is napping now. His napping has shifted from afternoon to morning.
April 19, 2006 9:15 PM--I've got just a brief update tonight. Besty said Ross is tired and grumpy, but they're still reducing the Klonopin and she made a small reduction in it last night, substituting it with the valium as per instructions. She thought that might be the cause. He did, however, sit really still for the acupuncturist today.
As Betsy said, steps forward, steps back, but always more forward.
Thank you for your support and your prayers for Ross's continuing recovery.
April 18, 2006--received a note from Betsy:
Ross did not feel as well yesterday. He was sluggish during the afternoon therapy session, but he did well with Jeremiah in the morning. His language skills continue to progress. Yesterday, he said, "It's really painful." Another time when I was massaging his jaw, he said, "That hurts badly. Please stop." A little later, as I walked out of the room, he said, "I like the way you walk."
Betsy
April 17, 2006 10:00 PM--I talked to Betsy awhile ago. She said Ross is doing absolutely wonderfully. It's obvious in the little things. Before, she said they would have to ask him questions and then work through yes and no answers. Now Ross is framing his quesions specifically, asking for things in a much clearer fashion. For instance, today he wanted to call his dad at work. For some reason, Jeremiah elected to call his wife and have her talk to Ross. He said Ross made all the appropriate responses during their conversation.
Later, when he wanted to go to bed, Betsy needed to use the sling to get him out of his wheelchair and into his bed. Ross decided he really wanted to be in the bed the caretaker sleeps in. He's finally showing an ability to express his wants and needs for something besides food...however, Betsy won this battle and Ross ended up in his bed.
He's come so far, but it's certainly not been a journey traveled alone. Thank you for your support, your prayers and your healing thoughts. You've been a huge part of Ross's long but consistent recovery.
April 16, 2006--Received a note from Betsy:
Today, has been a rest day for Ross. We had just the four of us at home today: Rusty, Ross, Ariel and I. Ariel made a nice dinner and we all ate together. (Ross usually eats earlier and separately.) The food was very good and we all enjoyed it. Ross has become a fast eater, so I kept reminding him to slow down and have a leisurely meal. He obviously had a good time. Rusty was talking about Ariel as she was putting food on the table. Ross looked at her with his joyful look, and said, "I love her, Ariel." He told me once again, "I have always loved you." To Rusty, he said, "I love my father." After dinner, he and Rusty played a mirroring game with some pretty fancy head and hand movements, and Ross did them all. A couple were really funny. Ross lobbied to go back to his room for about fifteen minutes. He finally said, "I'm sleepy", and I started to take him back to his room. When we passed the door to the garage, however, he let me know he wanted to go out. Rusty showed us his nice hydroponic garden, and then we opened an old file cabinet Ross had used as a bedside table. Inside was his freshman student ID and he wanted to hold it between his two powerful fingers. We then found a box of business cards from his first job at an investment firm. I took one out and told him what it was. He said, "Wow!" and added that to his collection. He really was tired, and after Rusty and I got him in bed, I put on some quiet music I play for him at bedtime and he was asleep around 9:30.
April 15, 2006--Received a note from Betsy:
Ross has been so busy this week with therapy and appointments. He continues to progress. In the walker yesterday, he moved his left foot forward by himself once. Small gains, but significant. The last brain surgery Ross endured was to clean the mucosa that had been sucked into the right frontal lobe because of the frontal fracture. That 7+ hour surgery, saved his life once again, but damaged that area in the process. Thus, it has taken almost four years to start to regain control of the left extremities. Movement first started in his left shoulder, is progressing to the hand, and is emerging in the left leg. We have noticed his feet are now ticklish and he is definitely more aware of the left side.
I have been using cards showing body parts this week. My goal is for him to be able to say the words after me. He has used some of the words in speaking, but it is so random. We are trying to make word retrieval easier. When I got to the card for shoulder, Ross rolled his shoulders with out my saying anything. This of course indicates that his awareness of his own body is present. Thank you everyone for your continued prayers, support and good wishes.
Happy Easter.
Betsy
April 13, 2006 9:10 PM--Ross had a really good day, even though Jeremiah had to leave early, including an excellent occupational therapy session. Betsy said that when they left to go to the occupational therapist, she took a different route away from the house. Ross asked her, "Why are we doing this?"
Ross is much more involved in life than he's been in the past. He is aware of his surroundings, able to aks for things, and able to express his opinion. Definitely a huge change since he was first injured.
April 11, 2006--a note from Betsy:
Ross had a good day. He was tired and somewhat congested, but he also appeared to be asserting his independence. Tonight, Jeremiah called me to come to Ross's room. He was putting Ross's shoes on. Ross not only raised his right foot for the shoe, but he raised his left foot up, about twelve inches off the bed, and not once, but three times. This is a first!!! Later, as Jeremiah was getting ready to transfer him to his wheelchair, Ross put both legs over the side of the bed, and put his feet on the floor. He then proceeded to try to stand up, pushing down through his feet. We are all so excited. Betsy
April 10, 2006--a note from Betsy:
Ross is definitely a happier man now that Jeremiah is back. I realize now that I should have used a calendar and had Ross mark off the days. I still have trouble remembering that abstractions that seem so simple to me are not simple for Ross. I talked with his speech therapist about how I can help Ross with word retrieval and I hope to be able to start a more focused program this week. I just have to find a block of time to sit down and prepare lesson plans, just as when I was teaching. We have our quarterly meeting with the neurologist today and it will be gratifying for the doctor to see Ross's progress. Ross has made big changes in fine motor skills and some in language. Betsy
April 9, 2006 9:30 PM--I've been doing Ross's website for almost four years now. It's been exciting and heartbreaking and inspirational all at the same time, but for some reason, tonight I've been thinking about the Ross that should have been. The young man who was so quick witted, so caring and funny and intelligent, and how hard his struggle to regain himself has been since he was injured. When I talked to Betsy tonight she said his day went well, but he continues to ask her, "What's my name?" And, his mom tells him, just as she tells him that he was badly hurt in an accident that was not his fault, that he's getting better. Then she reminds him that he can never go back, that things will never be the same, but they can still be good. She said Ross has been telling her, "I want to die." Then he laughs, but I know Betsy has to be wondering exactly what Ross remembers and what he is thinking. It's never easy to raise kids, but in this case, it's harder than any parents should have to deal with. Please remember Ross and his family in your thoughts and prayers. They need you now just as they did when he was first hurt so many months and years ago.
April 8, 2006 9:30 PM--Betsy said Ross had a pretty good day today. Yesterday she said they felt as if he had the beginnings of a petit mal seizure, but it never went beyond his having a difficulty swallowing. Today, though, was a nice day and Ross did well. When Betsy was helping to dress him he tilted his body and lifted his hips to help her get his pants on him. She said he seems to respond well to having just his family around, though he continued to ask today what his name was. Jeremiah will be back on Monday which will take some of the responsibility off of Betsy's shoulders. As much as he tries to help, caring for Ross is a lot of work as he continues with his therapy and rehab. Thank you all so much for your continuing support, your prayers and your healing thoughts.
April 6, 2006 9:30 PM--Just talked to Betsy. She said Ross seemed rather sad today and she finally figured out that he misses Jeremiah. She explained to Ross that Jeremiah was on vacation and would be back on Monday, and she said he was noticeably better after that. She also said his speech seems to have taken a giant leap and he's saying a lot more. For instance, tonight when he was eating, he got tired of feeding himself so he held the spoon out and said, "Put it on." Betsy said she got out a deck of Old Maid cards and pulled out a few pairs. Ross was able to match written words with numerals, which was really exciting. He's definitely got his cognitive abilities.
When Betsy and I were talking, both of us marveled at the fact that even now, almost four years post-injury, Ross continues to make advances. We celebrate the small but steady steps he achieves, but the tragedy is that this is a young man whose life was irrevocably changed by a single act of carelessness. His friends have gone on to marry and have children and find their lives as adults while Ross continues to struggle with the basic skills of living, constantly aided by his family and caretakers. Ross had a brilliant and unlimited future ahead of him. Much of his drive now is due to the fact that he was smart and goal oriented and very competative before his injury. Those same character traits are what motivate him now, even though there are so many barricades in his way. Your support and prayers are essential to his recovery and rehabilitation. Thank you so very much for your continuing faith in Ross's long and amazing recovery.
April 4, 2006 9:45 PM--I just spoke with Betsy and will post a brief update. Jeremiah, Ross's primary caretaker (mostly nights, I believe) is on vacation so Betsy is taking on a lot more of Ross's care while he's away. There are other aides who come in, but not for as many hours. Ross is finally feeling better and she said he had an awesome occupational therapy session today. He's using his left hand more with better control and continues to show progress with both his left and right.
Thank you all so much for your continuing support, your prayers and healing thoughts. It's hard to believe it's been almost four years since Ross was injured, but his progress continues to astound everyone who knows him. He couldn't have come this far without your support and your love. Thank you.
April 3, 2006--Again, I need to apologize for not updating as regularly. I've discovered that life often interferes with living, if that makes any sense. Betsy, bless her soul, found time to send me an update:
I am so sorry that I have not sent the update sooner. We are having some scheduling problems because of caregivers needing to change their schedules. I am picking up the slack, plus all the usual responsibilities.
Ross has had a great few days. His cold is gone and the chronic congestion is responding to the herbs and homeopathic remedies that the acupuncturist suggested. On Saturday, we made a pizza. Ross helped pat the dough, spread the olive oil, and cheese. He certainly enjoyed eating it. Later, I thought Ross was starting to have a seizure. Rusty and I were sitting with him and talking to him about the frustration he is probably feeling at not being able to get his body to do all the things he wills it to do. Ross said, "I have a life." We responded affirmatively, and Ross smiled a big smile. Then his right hand started to quiver, another possible seizure precursor, and then he opened the thumb and first two fingers, the power side of his right hand, and touched the tips together. This is something he has been working on, but now he can do it when asked and he is so pleased.
On Sunday, as I was bathing him and I was washing his underarm, he bellowed in that BIG voice of his, "That tickles." Since he slept to 11:00 A.M., I gave him a long brunch. The last course was some more of his pizza. I was also eating some. He saw me eating it and said "Stop! Don't eat me." It was clear to me that he meant to say, "Don't eat my pizza."
Today, during physical therapy, the therapist taped his left ankle and foot, and he sat and stood with the foot being in a much better position. On the last stand, he stood for about ten minutes. I was standing in front to block one of his knees, and he put his right arm around me, held me and would occasionally kiss me. It was awesome.
March 31, 2006 9:30 PM--Betsy said Ross had a terrific day today. He was on the mat in the guest room/therapy room (as Betsy said, every room is a therapy room!) and Jeremiah was holding a watch out for Ross to reach for. He loves watches. In the process of trying to grab one, Ross rolled completely over to his side and put his feet down on the floor. With a little help from Jeremiah, he was able to sit on the edge of the mat. Betsy said his fine motor skills are improving dramatically. They've got a little plastic bat Ross uses to hit a stationary ball and he was able to whap it with both his left and right hands.
Betsy said they've had him on a new supplement called Frequensea. It's a phytoplankton based supplement Ross has been taking for about six weeks now. Betsy said she's not sure if it's the reason or not, but Ross's motor skills and communication skills have improved dramatically in the past few weeks.
One of the doctors Ross saw recently said he thought Ross's was cognitively "there" but, like someone with cerebral palsy, can't get it out. A poignant comment he made seems to back that up. Ross had just finished his bath and was talking to Lisa, his caretaker. Ross said, "Please open the door. I need somebody to open the door inside of me."
Thank you for your prayers and healing thoughts for Ross and his family and the many people who help care for him. You are a powerful part of his rehabilitation.
March 30, 2006 9:40 PM--I talked to Betsy tonight and Ross still has the lingering congestion from his cold, but he's feeling better. Betsy said the past couple of weeks have been really busy and they're all tired, but Ross's fine motor skills are coming along really well. Today he was able to do things with his left hand as well as with his right. He's also more conversational in spite of being tired. Ross did say, "I need to sleep," and he's been able to ask for water or food. At one point, Betsy said all of them were in Ross's bedroom and Ariel and Rusty were giving him a bad time, teasing him. Betsy said Ross looked at her and said, "Why my own family?"
The biggest thing people remember about Ross before he was injured was his sense of humor. I love talking to Betsy and hearing that this intrinsic part of him is finally coming back.
Thank you all so much for your healing thoughts and your prayers. His progress, three and a half years post accident, is amazing.
March 25, 2006--a note from Betsy:
Ross is feeling better. Jeremiah has been doing transfers from bed to wheelchair without the lift part of the time. He says Ross is definitely trying to help.
Thursday's occupational therapy session went well even though Ross was sick and tired. Yesterday, when the physical therapist arrived, Ross said, "My name is John and I want to sleep." Jeremiah told him, "Well, John can sleep, but Ross is going to work." It is rewarding to see Ross's sense of humor these days.
**A note from Kate: I apologize for the brief and intermittent updates over the last couple weeks, but we have had two unexpected deaths in our family and everything has been terribly unsettled. I promise to get back on schedule asap.
March 22, 2006 10:00 PM--a note from Betsy:
Ross is feeling better. He said today, "I am sick". He also asked me twice, "Where is my father?"
When he was lying on his stomach in bed, he managed to get himself draped over the railing of the bed. This is an exciting development and scary. It is time to start researching tent beds for this time before he can safely get out of bed.
Betsy
March 22, 2006--a note from Betsy:
Ross is getting better. He was very congested and awake in the middle of Monday night. He is definitely subdued, but he had a very good occupational therapy session yesterday afternoon. We used the old steamy bath room trick last night, plus loads of vitamin C, zinc lozenges, fluids. Hopefully he slept better last night.
March 21, 2006--a note from Betsy:
Ross and I are a little better, although still congested. Ross was awake for three hours during the night because of it. He is very sleepy this morning, so he went back to bed after breakfast for a nap.
Betsy
March 20, 2006--a note from Betsy:
Ross and I have been hit by a cold again. We had a good time yesterday, in spite of it, watching Matlock, and hanging out. His communication skills are reflecting more of his internal dialogue. He told me yesterday, "I have more faith now." When I asked a question to affirm what he meant, he gave me a yes head nod. A friend and her little five year old came to visit today. Ross delighted in watching the little boy and playing with him, both of them hitting the Big Bop blow up toy from opposite sides. Jeremiah put Ross on his stomach, a good remedy for congestion. Ross practically rolled himself over on his side by himself. When I was putting a shirt on him last night, he moved his head so I could put the shirt over it, put his right hand through the sleeve, and raised his left hand to put it in the sleeve when I asked him.
March 18, 2006 8:40 PM--Betsy said there wasn't much to report tonight other than the fact Ross was really sleepy. He's sort of had his days and nights turned around, staying awake much too late at night and then wanting to sleep during the day which really cuts into his therapy. Betsy said she added more magnesium to his diet in hopes it would help him sleep.
Rusty sent me a new photo of Ross--he looks a bit pensive but so healthy and strong! Thank you everyone for your support, your prayers and your healing thoughts. Ross has come so far since he was injured. He still has a long way to go, but at this point, his recovery is nothing short of miraculous.
March 16, 2006--Betsy sent a postcript to her earlier note:
I forgot to tell you about Ross driving. Jeremiah had to go run an errand this morning. I was telling Ross that Jeremiah was going. Ross started swaying from side to side rhythmically and moving his hand back and forth in an arch like driving. He had a big grin on his face and we realized he was driving. Jeremiah asked Ross if he wanted to drive him. Then he asked if he wanted to take a small car or the van. Ross said, "Van." I told Ross, "Well, you can't drive like a race car driver." Ross said, "Promise."
March 16, 2006 8:15 PM--I just talked to Betsy and she said Ross is doing amazingly well. Also got a note from her earlier:
I hardly know how to begin. Rusty and I were so upset after Ross's seizures on Tuesday night. Yesterday, we all saw that Ross was moving his left foot and leg and we were relieved. Today, he is much more alert overall, communicating on a new level, saying new words, moving his body, and his right side with more strength and less spasticity, and he had a wonderful session with the occupational therapist. It is as if over night, Ross made a huge growth step. When I explained the first part of the seizure to our nurse last night, she said it sounded like a motor seizure. I have not yet researched the term, but it makes sense because Ross has made a huge step in motor skills. Our chiropractic neurologist has been telling us all along that he thinks the seizures have to do with new growth in the brain. We are really happy and enjoying Ross's humor and his loving spirit tonight.
March 15, 2006--Received a note from Betsy:
Ross had another great day yesterday. Awesome work in physical therapy and his occupational therapy exercises. Good pedaling. We went out to meet the rep for the fancy foot splint he has been wearing for a year and a half. It has gotten a lot of wear and she refurbished it. I sensed that Ross was experiencing some emotional flooding, but he proudly wore the splint home and asked for it back when we took it off and called it "mine". Then at 6:55 PM, he had a quiet seizure characterized by his gaze pulling to the extreme upper right, and no responses. When we thought it had subsided, we started to put him in bed and he went into a Grand mal. As he came out of it, his eyes were still fixed to the right and he seemed frightened. I held him, played soft praise music and told him it would be okay until he feel asleep. He is definitely exhausted this morning. It may partly be because of the meds we gave him to stop the seizure activity. But the big news is that this morning he wiggled the toes on his left foot. He has not done that for 3 1/2 years. It does seem that his seizures, hard as they are, happen when his brain is making a big step forward. Betsy
March 14, 2006--Received a note from Betsy:
Ross had a good day yesterday. He is definitely more relaxed. He let Ben massage his neck on Sunday, and he let the chiropractor massage his neck yesterday. He had a very good session with the speech therapist yesterday, and vigorously ate a big lunch. He has to be cajoled to take little sips of fluid during the meal. We insist because he likes eating so much, he doesn't always clear his mouth before asking for another bite. However, after the meal, he drinks it all very nicely. He also had a good physical therapy session later even though he initially used his considerable strength to stiffen his body against stretching and bending. He is becoming better at hitting a ball with the small bat in his left hand, and his right hand swing is much more accurate. We can see the improvement in his wrist movement. In fact, I played a game with him--he mirrored my wrist rotations with his own. I play a game with him through out the day having him mirror different movements I make- touch my nose, touch my stomach. Touch my chest, touch my nose, touch my head. We have a lot of fun. More and more he smiles and laughs spontaneously as he interacts with family and caregivers.
We have a request for readers. We have received a couple of calls saying that donors have received a stamped, but not sealed envelope, without a card in it. We are so sorry about this. If you have not received a thank you card for donations made since November 2004, please let us know at [email protected]
March 13, 2006--Received a note from Betsy:
Ross has been sleeping less, awakening at 4:30 AM and staying awake a few hours. He has been asking for food more, maybe there is a connection. The big news is that he raised his left foot out of the splint when the caregiver took it off in the middle of the night. This is wonderful, because it means he will be able to move his left foot by himself for walking. It also means that the whole left side can develop. The last big brain surgery he had three months post injury was on the right side of the brain , which controls most of the left side. I believe his left side has taken so long to move and move volitionally because of that. The surgeon is awesome, and the surgery had to be performed, but the procedure was invasive. Anyway, practice, practice, practice is the way to master control, and Ross is very courageous and persistent.. Another busy week ahead of us. Sometimes the schedule seems overwhelming, but with God's grace we will do it.
Betsy
March 11, 2006 7:45 PM--I just talked to Betsy. She's still not feeling 100% but sounds better. Ross is doing well, though Betsy said he's a little "cranky and stubborn," and she's hoping he's not coming down with the same bug she's had.
He's doing well in his different therapies, particularly so in OT, or occupational therapy. He had a great session in both the standing frame and his walker, though he still needs help moving his left foot.
Ross's therapy schedule is neverending, but he continues to show slow but steady improvement--better dexterity when he feeds himself, more strength when he moves his body or sits at the table. Thank you all so much for your prayers and healing thoughts and your continuing support for Ross, his loved ones and his amazing team of therapists and caretakers.
March 9, 2006 8:00 AM--Received a note from Betsy:
I'm sorry I didn't get back to you yesterday. This is an extra busy week and I now have the cold I have been trying to avoid.
On Tuesday, we saw the podiatrist about an AFO <ankle/foot orthotic> for Ross's left leg to give him more stability for standing and walking. We need to continue with his nighttime splint for a month, and then the doctor will cast him for the AFO. We have such a great Physical Therapist who suggested we do this. In fact, we have had a series of great PT and when each one has had to move on, then we have been blessed with a replacement who is what Ross needs.
He is continuing to progress with his upper extremities and is able to pick some things up from the table and put them in a container. He is also picking up these little Manna Bears and putting them in his mouth. He is also raising his right arm for eating and other tasks, instead of keeping his elbow down near his side. Thank you everyone for your support and prayers.
March 6, 2006 9:20 PM--I just talked to Betsy and she said Ross did really well today, but that he was tired and not feeling all that great. He complained of a headache at one point. However, Betsy said she was listening to a taped book review of a story about Stonewall Jackson, and Ross was very interested and paying attention. He had an excellent session with the speech therapist and, after a nap, did well with physical therapy. He's getting much better with his right hand and improving with his left as well. He's also getting stronger and better able to pull himself up using the parallel bars. Betsy said he's able to lift himself up off the chair a bit, though he still needs a lot of help to stand.
They've got an appointment tomorrow with the podiatrist to see about a splint for his left ankle to help strengthen it for standing.
As Betsy said, it's all improvement and it's all good.Thank you all so much for your prayers and your continuing support.
March 5, 2006: A note from Betsy:
Ross had a restful day. He indicated that he had a sore throat in the morning. After lunch, we watched the home channel. I was lying next to him in bed. When I tried to get up to go get something, he said,"No!" and put out his arm to block me. He is strong. I thought he was peeved with me, but when he started to smile, I realized that he had been playing with me. Later I was handing him little sesame crackers so that he could practice grasping them and putting them in his mouth. He became tired of doing it, and indicated he wanted me to put them in his mouth. When I wouldn't, he said "Put in my mouth."- another first time.
Betsy
March 4, 2006: A brief note from Betsy:
Ross was pretty quiet today and a little grumpy. He pedaled the spin cycle for a long time and he did well feeding himself manna bears and picking up blocks. He was so tired after dinner that he asked to go to bed.
March 3, 2006 10:00 PM--"Awesome!" That's how Betsy described Ross's day today. She said he slept well and was talking a lot during the day. He's doing really well picking up the small "manna bears," similar to "gummy bears" using his thumb and forefinger. He had a terrific afternoon of physical therapy including sitting on the edge of the mat on a small cushion that helps with balance and doing a number of maneuvers. They also took him out in the garage where the parallel bars are. Betsy said they use chocolate morsels to entice Ross forward, and he's able to pull his chair forward between the bars. Then, with help, he can pull himself upright and stand. He's putting his weight down on his feet and helping to pull himself up.
His progress continues, and every step is amazing. Thank you all so much for your support, for your prayers and your healing thoughts.
March 2, 2006 9:20 PM--Betsy said Ross was really sleepy today when he first got up. The occupational therapis arrived around ten and tried working with Ross, but he really needed a nap...so, he got one and did great afterwards.
As far as the rest of the day, Ross held still for his acupuncture, which is a good thing!
At dinner, Jeremiah used his spoon to put tomato juice in Ross' s spoon...which he then lifted to his mouth without spilling a drop. This is another big step for Ross.
March 1, 2006 10:15 PM--I talked to Betsy about an hour ago and she said Ross was a little tired tonight but he had a great day. She took him to the chiropractor and Ross was full of smiles and laughter. After the visit, Jeremiah walked Ross (in his wheelchair) to the hospital for his tests. When Betsy drove by in the van, Ross waved at her.
When they came home, Betsy was giving Ross some water with a mixture of the homeopathic mixtures in it and he stopped and said, "This tastes yucky." Then he laughed.
Dominic, the occupational therapist, was working with Ross and gave him a jar with a lid he had to unscrew to get at the gummy bear inside. It's actually a mixture of the supplements Ross takes, but they look and taste a lot like gummy bears and Ross likes them. He opened the jar and dumped out the gummy bear and picked it up in his fingers. The second time, he did even better. He's dexterity continues to improve.
February 28, 2006 10:00 PM--Ross had another seizure last night after I talked to Betsy. It was a grand mal that lasted three minutes, but she said that within an hour Ross was lifting his left hand from the elbow, not the shoulder, which is a big step. The seizure might have been part of the process of connecting neurons and healing. Later today he had a great session with the occupational therapist, so there don't appear to be any lasting negative effects. Tomorrow Ross goes in for the blood tests he has every couple of months to check his Tegretol levels and the electrolytes in his system.
Ross continues to show improvement, but obviously still has a long journey ahead of him. Thank you so much for your healing thoughts and prayers.
February 27, 2006 9:00 PM--I just talked to Betsy. She said Ross slept really well last night and then was fairly quiet this morning when he woke up. He was really hungry early, so Ariel fixed him some breakfast, but then he didn't eat much. Later in the morning he had a petit mal seizure. Betsy said she thought of giving him some extra magnesium this morning and didn't. It might have prevented Ross's seizure. Ross didn't seem to have any lasting effects from the incident.
Thank you all so much for your healing thoughts and your prayers for Ross's recovery. He continues to show improvement.
February 26, 2006--A note from Betsy:
Ross had a quiet day. He seemed tired, but only took a nap in the afternoon. We watched "The Never Ending Story", a movie that Ross and Ariel watched over and over when they were little. He seemed to be watching, but he also seemed very thoughtful all day.
The big news is that I left him sitting up in bed, came back into the room and he had maneuvered himself into a lying down position and had both legs draped over the railing. I am used to that with the right leg, but to raise the left leg that high is a new move.
February 25, 2006--Received a brief note from Betsy this evening:
Ross had a good rest day today. This morning, right after waking from a nap. He was laughing, a deep joyous laugh. He told Ben, "Stop, that (laughing) hurts, Ben." He spent time on the mat and stretching as well as pedaling at the exercise bike for an hour while watching a DVD from The Tour de France.
February 24, 2006 9:15 PM--Ross had a pretty good day today. He's received a wonderfully generous donation from a chain of physical therapy clinics: a set of parallel bars to help with his PT. Today he worked on them while in his wheelchair, pulling himself forward, bending his arms and bringing himself along really well.
It was such a beautiful day. Rusty and Ariel took him outside where they put Ross in his walker. He did well, but Betsy said it was a bit overwhelming for him. Still, he continues to show improvement with every task.
His physical therapist was working with Ross today on stretching. He'd had about enough and said, "Would you please release?" He definitely gets his point across!
February 23, 2006 9:25 PM--Today went well, according to Betsy. Ross had a great session with Dominic, the occupational therapist. Betsy said Dominic is really good about explaining what he's doing and how it will help Ross. He keeps a list of his plans for the day, and while he was talking to Betsy about some of the thing they'd done, Ross was busy pointing to two things on the list: Finish and Go Home. As Betsy said, there's no doubt he understands well and can read.
On another note, at one point today, when he was excited about something, Ross clapped his hands. That's a new response.
February 22, 2006 10:25 PM--Betsy said today went well, other than the incident with the Wasabi! Betsy was working with Ross to pick up small crackers, which takes a lot of dexterity and also gives him a reward--the cracker--when he manages to grasp it in his fingers. Betsy had to leave Ross for a moment to go into the kitchen, and while she was gone, Ross scooped up the contents of a container of Wasabi and popped the entire thing into his mouth. It's hot. Extremely hot! Ross did some puffing and blowing and Betsy gave him water and yogurt to cool his mouth. He's fine, though I imagine he'll view Wasabi with more respect from now on...
February 21, 2006 8:50 PM--Ross did really well today, especially in occupational therapy. Betsy said he's showing lots of progress. The chiropractor made a home visit and got to see how Ross does eating and functioning at home, and was impressed with his progress.
Thank you for your support and your prayers and healing thoughts for Ross's recovery.
February 20, 2006 10:30 PM--Received a note from Betsy:
Today was one of our too busy Mondays. Ross slept through the night, but was awake around 7 AM. Our first appointment was the chiropractor, then the speech therapist, and then home and the physical therapist. Ross was definitely more tired than usual, but he ate lots of food and ate it well with the speech pathologist. She again was pleased with his progress in the last week.
He had less than an hour after coming home before the physical therapist arrived. He did not want to work, but did very well. When he was on the mat, she put both feet flat on the mat, knees bent. He moved his knees from side to side, with his back flat on the mat. He did it at least four times, and it was beautiful. He also did a beginning bridge, again without cueing or help.
At one point, he asked the therapist, "How is your family?" This is another new thing, to ask how somebody else is. Most of his speech is related to what he feels and what he wants. He says to us many times during the day, "I love you" or "I still love you".
I wanted to take him to Santa Rosa to see the finish of the first stage of the Tour of California, but getting him in his chair into the area was a problem, and we will watch the ESPN coverage tomorrow.
February 19, 2006 9:20 PM--First of all, congratulations to Levi Leipheimer for his win in the prologue today of the first Tour of California! Ross used to ride with Levi when he trained in Sonoma County. It's really exciting to see the hometown guy do well--we wish him luck for the remainder of the Tour.
Ross had a good day today. Betsy said he had a full twelve hours of sleep and a nice, restful day in preparation for the busy week ahead. They had hoped to take Ross to see the race tomorrow in Santa Rosa, but with all the roads closed off it would be too difficult to get him out of the van and wheeled to the race. Instead, Betsy said they'll continue their regular schedule of Monday therapists appointments. Ross continues to show improvement each week, which is absolutely amazing considering how much time has passed since he was injured.
Thank you all so much for your support and your prayers for Ross's recovery.
February 18, 2006 9:40 PM--I talked to Rusty tonight and he said that Ross had a good day. He's talking a lot and letting everyone know what he does and doesn't want. His left side is much stronger and he's able to make a lot of movements that would have been impossible just a few short months ago. He's also working hard on his trainer. The physical therapist commented on the fact Ross's muscles are well balanced, an important sign of how well his brain is "fireing" and sending the proper signals to muscles to relax and contract.
He's definitely continuing to show improvement.
February 16, 2006 9:15 PM--I just received a note from Betsy:
Our daytime caregiver was sick today, so Rusty covered for me long enough to go to Pilates and then the rest of the day was feeding, cooking for, dressing, therapy, and more cooking for Ross. He slept most of the morning, and then woke up with a smile and saying, "I was asleep, ...(mumbling) dreaming, now I am awake." Wow! A mouthful. The exciting thing is that it shows complicated thought and sequencing. Later, at dinner, Jeremiah put a small amount of food on Ross's spoon. Ross said, "Give me plenty." Later, he was coughing, and Jeremiah asked if it wanted the nasal spray. Ross said, "Maybe." During physical therapy, he sat on the edge of the bed, leaned back against the therapist, then completely using his own trunk control and strength came forward to hit a ball with a plastic bowling pin, showing the best control, strength and precision yet. He did this over and over. In the walker, he moved with the most smoothness yet and it took less effort on the part of the therapist to move his left foot. All in all, a very good day.
February 15, 2006 10:15 PM--note from Betsy:
Ross has had two good days. He is doing so well in developing fine motor skills with his right hand. He is straightening his right thumb without help and picking up small objects and putting them in a box. He is also picking up smaller objects with tongs. We have been having a problem with Ross putting these objects in his mouth, but Jeremiah put small pieces of chocolate out that Ross could have after completing each move. It worked because Ross did not put any of the objects in his mouth.
Last night when Rusty called, I put the phone to his ear. He said, "Hi! and "I love you" to Rusty. It was his first phone conversation.
I talked to Betsy earlier this evening and she said Ross is doing really well, especially moving his left side more. She's been giving him a Chinese herbal supplement, something recommended by their acupuncturist, and it appears to be helping with Ross's congestion. It's called Er Chen Tang and Betsy thinks it's definitely doing something good.
February 13, 2006 9:25 PM--Betsy sent a note. I apologize for not updating over the weekend, but I was away until late last night. Betsy wrote:
Ross had a good weekend. On Saturday, he pedaled the exercise bike for over an hour while he watched an old DVD of the Tour de France. The great thing about this is that unlike the Ex-n-Flex pedals that he has used for two years, he has to do all the work himself. This is paying off, because this morning when he was stretching in bed, he raised his left leg from the hip and shook it. Later, he bent both legs together. While he has had an almost fully functional right leg for almost two years, the left leg and arm are just waking up and responding. Today, he also became aware that his left arm was hanging down beside the wheel chair and raised the arm in order to put his left hand on the arm rest. We have always had to remind him and even tap the hand in order for him to move the hand. He is moving from the shoulder right now, but we expect to see him able to move from the elbow in the future.
At speech therapy, Dr. Swain was very pleased with the progress he has made in just one week in mouth tone, tongue strength and clearing his mouth.
This afternoon, when the physical therapist was stretching his legs and torso, he asked, "Are you my sister? My mother? I love my sister. I am in my home. In my mother and father's house." Later, we worked on Ross beginning to pull himself up while holding on to the pole. Again, we used food to motivate him to reach out over his toes and to stand. It was very hard work but he did very well.
February 10, 2006 8:25 PM--I just talked to Betsy and she said Ross had a good day. Nothing spectacular, but a slow and steady push forward. He worked really hard in physical therapy and stood up, with a lot of help, using the pole. They also got him into the walker but he still has trouble moving his left foot. He does much better with the right. After awhile he got tired and Betsy said they helped him back into his chair.
He works hard and sleeps hard, is eating well and talking. Betsy said he continues to do well.
Thank you all so much for your continuing support and your prayers for Ross's ongoing recovery.
February 10, 2006--Received a note from Betsy:
Ross had a hard time getting started at first on Thursday. Early therapy sessions are difficult because he has been going back to sleep after breakfast even though he has slept through the night from 10 to 5 for the last week. However, he is having more energy in the afternoon and is insisting on longer pedaling sessions on the exercise bike.
Ross's best friend just had a baby and Ross became excited when he saw the pictures of the baby and parents. It was very touching. Ross always looked forward to having his own children and he has always been very good with them.
February 9, 2006--Received a note from Betsy:
Ross was very tired yesterday. He slept a long time after breakfast, then again after lunch. We went to Sebastopol for acupuncture which he handled very well.
He has been more congested, but I think that he looks better and his color is better. The increased congestion may be what is called a healing crisis. I left him doing puzzles with Amy, one of our caregivers, and he was asleep when I returned. I am remembering that these really sleepy days often precede a developmental spurt.
February 7, 2006--Received a note from Betsy:
Ross was up in the standing frame for breakfast. He has been congested; this is isn't a new thing and it is for the most part better. We have started an herbal mixture that seems to be helping the cause of the congestion. It seems that it is not just allergies, but also digestion. Anyway, he wanted to go back to bed after breakfast. He slept for two hours, and had to be awakened then. After lunch, he had occupational therapy. He was not quite as crisp with some exercises as last week, but he also seemed to be seeing if we would help him if he waited. This is a good sign cognitively, but an indication that we can never rest in our vigilance to provide opportunities for growth without making him dependent.
February 6, 2006 9:50 PM--Ross had a pretty good day today, with his usual heavy schedule of visits with the acupuncturist and the speech therapist. Betsy said he got a little stubborn at times, but that's a sign that he's more aware of what's going on around him. She said he was also moving a lot in his chair at the chiropractor's, but that was to get away from the activator that relaxes muscles.
They had Ross out on the deck, trying to get him to stand with the help of the deck railing. Finally, Betsy said they brought his pole out and used chocolate to entice him to reach higher and stand straighter. It took a lot of help--and a lot of chocolate taped to the pole--but Ross managed to pull himself up. This movement requires weight bearing and using both his arms and his legs to lift himself. Betsy said it was really exciting. This is much more difficult than standing in the standing frame, which controls his legs and holds them in place. Ross is using the muscles on his left side more, moving his arm from his elbow rather than his shoulder, and opening and closing his fingers.
Ross is doing so much more, and the progress continues, three and a half years post injury. This is something the doctors said wouldn't happen. It's really wonderful to prove them wrong, but it's taken an amazing amount of work by Ross's family and support team, and all of your prayers. Thank you so much.
February 5, 2006 11:30 PM--a note from Betsy:
Ross has been a delight the last few days. He cycled with the exercise bike yesterday while watching a DVD of the Tour de France. While eating dinner last night, he told Ben "You should be the woman of the house." Earlier in the day, he told me, 'I am full." He laughed and then said, "Give me food." All of this is so much like his pre injury sense of humor that it makes me grin.
Today, he talked a lot while I napped in the bed in his room. (I don't think he slept at all.) Some of what he said was understandable, a lot more I couldn't understand. When I got up and walked over to his bed, he pulled his right leg up, rolled his torso toward the right, reached his right arm toward me, while saying "Pull me up." I held his hand and he rolled all the way over in the bed, draping his right leg over the outside of the railing to keep himself in place. He did that three more times.
Wow!
Later, Ariel called me on my cell phone, and as I answered it, he said "That's my sister. " Then he said, "I love my father, my mother. I love my sister."
Betsy
February 3, 2006 9:10 PM--Betsy said Ross is an absolute delight right now. A few days ago, he said, "I am still happy." Ross spent some time in his walker today and is working hard to use his left foot and leg more. He's also working his left arm more. Betsy said they were working on his hand, touching one another's noses and Ross started laughing. Also today Ross wrote his name without any assistance.
There is a link at the top of the page to a fascinating article written by a clinical psychologist who suffered a traumatic brain injury in a car accident. If you have the time, please read it. I'm reposting it here, but it's excellent:
Over my Head,
a fascinating look at TBI written by
Claudia Osborn
February 2, 2006 8:15 PM--When I called Betsy tonight, she said Ross is doing so well! He's back in fighting form, feeling better and working hard. Betsy said they've really noticed in just the past week that Ross definitely understands what they're trying to do with the therapy and he works really hard at everything. Where he has always fought the hand splints, he realizes now they are an important part of his therapy. He understands the connection and actually wants to have them on. They're working with the pole and trying to get Ross to the point where he can pull himself up out of bed with it, but there are a lot of steps he'll have to master before he can succeed. Please keep Ross in your thoughts and prayers as he continues on his long but steady road to recovery.
January 31, 2006 9:05 PM--I was just getting ready to call Betsy when I checked my email and found an update:
Hi,
Hope ya'll are feeling better. I am beginning to and Ross definitely is. He was back to work today, and had two very good therapy sessions. He sat independently on the edge of the mat and ate breakfast while coming forward to the spoon. What was really neat was that he decided to alternate from the left side to the right side of the pole all through breakfast. He still needs to develop his ability to pull himself forward to the pole with his arms, rather than using his trunk. He was also doing a unilateral bridge while lying in bed tonight. He has been funny, cooperative and charming today.
January 30, 2006 8:30 PM--Just talked to Betsy. She said Ross still isn't feeling all that well, so today was a rest day with nothing much to report. He had a quiet day for a change without as full a schedule as he usually has.
Thank you all so much for your continuing support and your prayers for Ross, his family and his amazing team of caretakers.
January 29, 2006 10:00 PM--A note from Betsy:
Ross is feeling better today. He had a very short Grand Mal seizure last night - his temperature was 101 axillary at the time. We immediately gave him Valium in the G tube, and that was the end of it. Afterward, all of his vital signs came down to normal ranges. Tonight he is doing much better. Our Sunday night caregiver is sick, so we have a whole twenty-four hours of just family. I haven't accomplished anything else today, but we have enjoyed our one on one time. I heard Ross mumble today, "My name is Ross Dillon." Even though he still tires easily, he is showing improvement in little cognitive cues. Like hearing a noise, and looking to see where it is. Or, cueing him on a cough, and he immediately does it.
January 28, 2006 10:30 PM--Betsy's most recent note--Ross really needs your prayers as they try to reduce the Klonopin in his system:
I'm just trying to keep up with the news so I don't forget. This morning was scary. Ross had a temperature of 103 under his arm, a pulse of 139 and a high blood pressure. His temperature at 5 P.M. is now around 100 axillary and his pulse is 103. It is possible that it is a virus, but after talking to the neurologist, researching Ben's nursing books ( Ben is today's caregiver,) I have decided that it is related to tapering Ross's Klonopin. Fevers aren't usually associated with withdrawal, but I think that since brain injuries frequently affect the hypothalamus, then withdrawal of the Klonopin caused a reaction in his hypothalamus which controls temperature. This is my theory - I do not know that it is true. I am partly basing my theory on the fact that I gave Ross a teeny amount of Klonopin this morning, and within twenty-five minutes he started to have some relief. At any rate, we need prayer coverage as we continue to work toward the goal of Ross being completely of Klonopin, which may take a year.
January 27, 2006--I'm just home on Jan. 28, but will post Betsy's notes in order:
Friday,
Ross has had a cold for the last two days: runny nose, tired, no fever but he looks sick. Like the trooper he is, he pulled it together to participate in occupational therapy on Thursday morning (those little pieces of chocolate tucked inside the containers he has to open helped). He then rested the rest of the day. We were going to go ahead with physical therapy this afternoon, but we decided he was just too under the weather. Instead, we had our therapist who is also a massage therapist give him a massage. He resisted at first, told her to "Go home" many times and "Food," but then relaxed into it. When the massage was over, he looked much better. He has also been saying some new things. "In the morning." "I'm hot." "Come back, Sir" "Mouth"
January 26, 2006 10:00 AM--I just received a brief note from Betsy. This will be the last update for a couple of days, as I have to be away until Saturday night at the earlierst.
Yesterday was a quiet day. Ross didn't feel well, but is doing better today. At five this morning when I was giving him food and meds he said "Betsy" and laughed.
Betsy
January 24, 2006 7:50 PM--A note from Betsy:
Ross is less tired today. He had breakfast sitting on the edge of the mat and holding on to the transfer pole while we had him lean forward to eat his breakfast. We finished with him knocking a ball out of my hand over and over, and then 3 tries at coming forward over his legs and beginning to lift his bottom off the mat. He got a rest in bed before lunch, then we prepped for his occupational therapy session to optimize his session. He had worn his hand splints while in bed to relax his hands. He had chicken and vegetables without excess carbohydrates for lunch. We gave him vestibular stimulation by turning his chair in circles - 5 turns one way, 5 turns the other. The final thing was to put classical music, especially Mozart, on to play before and during his session. Ross worked hard for the first hour and a half before fatigue set in. He then had physical therapy for another hour and a half and did very well with those exercises. He was a very tired man when we were finished.
He continues to be more tense than usual and I still think it is related to the tapering of the Klonopin.
Jeremiah wrote Ross's name on the easel tonight and Ross said, "My name."
Addendum from Betsy: I just looked at Ross's easel. Jeremiah had started writing the alphabet on the paper, A-G, and Ross had copied it on his own. This is brand new.
January 23, 2006 7:45 PM--I just received a note from Betsy:
Ross was unbelievably sleepy today. His temperature was normal, but he was tense, uncomfortable and tired. I almost canceled speech pathology, but we did go and he ate his lunch and controlled the food in his mouth very well. He seemed hungrier than usual, but managed a smile for me. After about half an hour, he was squirming in his seat (which, as I think about it, was pretty remarkable) and we came home. By the time we arrived here, his face was flushed and he was definitely uncomfortable. Jeremiah put him in bed, and we gave him water and some of the herbal concoction the doctor had given us to help him get through the tapering of Klonopin. He also took a long nap. He still is not very energetic, but definitely seems better. I don't know if he is a little sick, showing mild withdrawal symptoms, or just catching up on his rest.
January 22, 2006 8:40 PM--I apologize for not updating the past couple days, but both my husband and I have been down with whatever the current "bug" is that's going around. I just talked to Betsy and she said Ross didn't feel very well, either and was very tired today. He wasn't talking much and was also a little irritable. Betsy said she's read that irritability is often one of the stages a recovering brain injury patient goes through, though whether it's part of his recovery or just the fact he's coming down with something, she can't be certain.
Thank you all so much for your continuing support. Please keep Ross and his family and caretakers in your prayers.
January 19, 2006 10:00 PM--Betsy said Ross was doing well today and talking a lot, thought Dominic, his occupational therapist, said Ross was "copping some attitude." When Betsy asked Ross if that was true, he just smiled as if it were his own private joke. Betsy said she reminded him he could have attituded for somethings, but therapy wasn't one of them.
Removing the Klonopin is ongoing. Betsy said they've calculated it will take a full year to get Ross weaned completely from the medication. It causes actual changes in the brain, and those changes need time to reverse themselves, but so far replacing it with the Valium and moving in very small increments appears to be working.
Ross has been picking up blocks, using the thumb and forefinger of his right hand, and also opening lids. Betsy said his hand is much more relaxed and they're using the hand splints again with better effect now that the spasticity has relaxed.
He continues to show progress in a slow but steady process of healing and recovery. It's a very difficult journey aided by a terrific support team and the larger team of those of you who remember Ross and his loved ones in your thoughts and prayers. Thank you so much for you support.
January 18, 2006 10:25 PM--Thank goodness Betsy is on top of things. I've still got the "germ that won't leave" and I do appreciate her sending me updates:
Ross had another good day. Lots of talking, both clear and mumbling. He told me this afternoon, "I have been wanting food all day." After his bath tonight and just before sleep, he told Lisa "I am happy to still be living." We replace some of his Klonopin with Valium last week and tonight we started to taper the Valium. I am praying that at this very slow reduction of the drug, Ross has no significant discomfort. More tomorrow.
January 17, 2006 8:30 PM--Received another update from Betsy:
Ross did well in Occupational Therapy this afternoon. At least half of the exercises were new. He definitely has more function in his right hand and the left looks promising. Ross could do nothing with his right hand in the spring except hit cones. He now can move his fingers and with help moving his thumb can grab and release.
As I told you earlier, he is talking almost constantly and today it is complaints. He is grumpy. When I asked if he was mad, he said "mad". We have a blow-up punching bag shaped like a snowman. When we hit him, he falls over and pops back up. Ross spent about ten minutes hitting him. He was a little happier afterward. By eight o'clock he is tired and ready for his bath. He is in the bathtub now and saying, "Go home". That means "Let me go to bed." He has also been saying, "I am a man" a lot today. I am guessing that his dependence and needing to have everything done for him like a baby is bothering him. I have reassured him that he is still a man and that he needs all this help because he was hit by a car and received a serious head injury. I also tell him he is getting better, but this kind of injury takes a long time. Hopefully he will sleep soundly tonight. All the growth in his brain and the therapy is exhausting.
January 17, 2006--An update from Betsy:
Ross's advances this week are in thought processing and speaking. He is definitely aware of new things. He is more aware of his body and what is happening and is able to tell us. Today, he said, "My mind is in my body." Yesterday, he told the therapist, "My name is Paul. I like my new name." Later, when I told Rusty about it, Ross laughed a big laugh. Typical Ross humor.
This morning in therapy, we had him sit on the edge of the mat, holding the transfer bar and coming forward to eat breakfast. This is to train him to hold onto the bar in a safe manner and also to bend his arms, tighten his stomach muscles, and lean forward with his head up. All of these little pieces have to be relearned. I was just this morning thinking about the team meeting we had two years ago when a doctor who attended looked at Ross's CT scans and said, "I don't know why he is alive." Thank God he is alive and he is getting better. Thank you everyone for your prayers and support.
January 15, 2006--Betsy sent a note, thank goodness, as I've been flattened with whatever bug is going around:
Ross had a good day. We took it easy since the weekly schedule is busy, busy. He seemed a little more agitated in the late afternoon. It was very subtle, but he seemed alarmed and was saying no a lot. I think that could be related to our reducing the Klonopin. He slept well and is still sleeping at 8:00 A.M. this morning. Today is another busy day with
appointments and therapy.
January 14, 2006 11: 10 PM--Betsy sent the update tonight:
Ross has had a good day. He went back to bed for a nap after breakfast. He then pedaled on the new spin cycle for an hour. Afterward, he talked a lot.One of our favorite was: "I have no family, that's why I need food." He also said to Ben, "What are you searching for? your family?" I was lying down on the mat with him. He had been asking for food. He then laughed and
said, "I don't want food." And he didn't ask for food until we brought him into the family room a half an hour later. Just before bed, Ross asked Ben, "Who are you?" Ben said, "I'm Ben." Ross said, "Are you Jesus?" Ben asked, "Are you Jesus?" Ross said, "I would love to be Jesus." And he smiled and laughed. Ben said the way Ross said it was very touching.
January 13, 2006--Received a note from Betsy:
Ross had a good day on Friday. He sat still for the acupuncturist while he inserted and manipulated the needles. He did not even say, "Stop, don't do that." As usual we had a banana for Ross to eat during the session. We came home and rested for about thirty minutes before physical therapy. He was still tired and did not want to work. We had two therapists working together. He called Corinne, one of them, by name. He also said, "Go home; not for me, for you." After doing stretching exercises, he did some good stands with four people participating. We then got him in the walker and he stated walking with the therapists helping move his left foot and encouraging a more flowing gait with the right foot. When we came out into the living room where there is a wood floor, he was moving, but fatigue was setting in. I got out a chocolate bar and broke off a small piece and showed it to him. He then started to move forward to reach me and the chocolate. Then I moved behind him and told him to come get more chocolate. He did. We had a total of three forward and two backward runs for a total one hundred twenty feet. At one point, I was telling the therapists that Ross had discovered this particular chocolate when he was in Germany while a student. Ross nodded his head vigorously in agreement.
We were all thrilled with how well he did in the walker. It was his best yet. We also received the transfer pole, but Ross is going to have to practice pulling himself to it, bending his elbow and pulling his arms back to pull himself up. Another new movement to relearn and Ross has demonstrated that he has the courage and persistence to learn this too.
January 12, 2006 10:10 PM--Talked to Betsy awhile ago and she said Ross is doing pretty well. He sort of alternated being really tired and then doing relly well. Betsy said he worked better for Dominic and Jeremiah than when she tried to help!
The transfer pole came today. They'll install it by his bed so he can begin learning how to pull himself up and transfer to the wheelchair on his own.
Also, once again they're trying to reduce the Clonazepam (Klonopin) Ross takes. It was originally prescribed to help him sleep over two years ago, but it's horribly addictive and has a lot of side effects. When they tried back in June he became very anxious and went through a lot of signs of withdrawal. Since he was facing oral surgery at the time, the Dillons ended up not continuing with weaning him off the drug. The symptoms are really uncomfortable--sweating profusely, stomach cramps, anxiety...however, Betsy said she's gotten information from the doctor on a method of weaning him from the drug that uses Valium to replace the Klonopin a small amount for each dose. The Valium is slowly increased as the Klonopin is decreased, until he's free of the drug. Betsy described the process this way:
The way the tapering works is that part of the Klonopin is replaced with Valium, which is then slowly tapered off. When we have reached 0 mg of Valium, then we replace another portion of the Klonopin with Valium and taper the Valium to 0 mg. This process continues until Ross is off all Klonopin and all Valium.
The drug is one of the family of Benzodiazepines and recommendations now say a patient shouldn't be on it for more than three to four weeks. Ross has taken it ever since he was at Kentfield. However, since one of the side effects is memory impairment, Betsy said they really want to get Ross off it as soon as possible.
It's not going to be easy. Please keep Ross and his family and his wonderful caregivers in your thoughts and prayers.
January 11, 2006 10:30 PM--A note from Betsy:
I worked with Ross after breakfast on a cognitive exercise that the neuro optometrist had given him to do. Ross was really tired, but was able to identify r, o and m. After two sessions of 5 minutes each, he went back to bed to take a nap. He woke up laughing and talking. After lunch, Jeremiah worked with him on OT exercises. One of them is to pick up little rubber prickly balls with tongs and put them in a container. Ross picked up eight in succession, and put them into the container. Really fast. It was definitely much better and faster than ever.
Later, Ross cycled using the spin cycle that was donated recently. We leave Ross in his wheelchair, use his clip-on shoes and pedals and away he goes in a recumbent position. He cycled for an hour. Later, he sat next to me at the computer. Using his foot, he positioned the monitor so that he could see it, and also pushed the CD Rom buttons with his feet. While he ate dinner, he kept leaning over to give me a kiss. He drank all his juice using a straw. I hadn't given him a straw lately because he would use it for a few sips and then refuse it (I think because it was hard to drink through it.) Ross's improvements are like that, like a baby, one day he can't do it and the next thing I know he can. Another first tonight, Ross called Rusty "Papa". It was the first time since he was injured. He also said to me, "I am home. I like home." When Lisa arrived with her little dog, Ross rubbed her coat over and over with his hand. Another first. He has never seemed to like the dog before and he is always telling our dog, Josie to "Go home."
January 10, 2006 9:30 PM--I just got a note from Betsy:
Ross is somewhat subdued today. Yesterday was a PT day. He was in the walker as well as sitting on the exercise ball and standing on his knees. He was very active when we saw the chiropractor in the morning, which pleased the doctor a great deal. He has been working with Ross longer than all of the professionals who now work with Ross. Ross could only move his head when Dr. Adams first started working with him two years ago and it was Dr. Adams who encouraged us to put Ross on his stomach for the first time in eighteen months. That proved to be a pivotal event in Ross's recuperation.
Today, Ross ate breakfast and played games while standing in the standing frame. Then off to see the neurologist for a checkup, then quickly home for lunch, and immediately afterward occupational therapy for two hours. An exhausted Ross took a nap, then pedaled for an hour before dinner. He did a little bit of drawing after dinner, moved around the living room in his wheel chair, and then posed while I took some pictures. Hopefully one picture will be good enough to use for the web site. Jeremiah is giving him his bath now and I expect Ross will fall asleep quickly when he goes to bed. His days are so full and we still aren't doing everything we would like to do. No wonder he is tired; I am tired just keeping up with him.
January 8, 2006 9:20 PM--Ross spent an hour and a half on the bicycle trainer that was recently donated. It's a recumbant style and Betsy said he got a really good workout on it. He was tired this morning but perked up later in the day. Also, at one point when Ariel walked by his chair, Ross asked her, "Where are you going?" His interest in other people is a fairly new development. In the past, most of his comments have revolved around himself and how he relates to people.
Ross continues to do well and show improvement. Thank you all so much for your continuing support and your healing thoughts and prayers.
January 6, 2006 10:25 PM--I worked late and just got a note from Betsy:
We are all pretty tired tonight. Ross had a good day. Lots of talking, particularly about himself and others. I think his stubborn streak appeared today, but he still worked hard this afternoon when we had him in the walker. He had more spastic tone in his feet and got a cramp in his right foot at one point. We are all pleased that he follows our verbal commands about moving a specific part of his body, and when we suggested he move his foot, he did. I gave him some extra magnesium and he seemed more comfortable afterward. He then sat for a long time with his right foot propped up on a table. I was reminded of all those times when he would be seated at the table and tilt his chair back on the back legs. How I would love to be fussing about such a simple thing now.
Rusty and I had a great meeting with the neuropsychologist. In talking to him, I realized how much Ross has changed in just one month. What Ross is doing now was just a faint hope three years ago. Thank you everybody for your help.
January 5, 2006 9:50 PM--Just talked to Betsy and she said Ross is doing well, but he's very tired and had a tought time getting started this morning. He'd been doing various therapies all morning long, yawning, stopping to take deep breaths, and nodding off, then around mid morning he started giggling and laughing at himself. Betsy said they decided that's when he finally woke up! The interesting thing though, was that when Betsy took Ross to the chiropractic-neurologist, the doctor was very interested in Ross's neurologic development since his last visit. He commented that Ross's "cerrebellum must be working hard," and asked Betsy if Ross had seemed overly tired recently.
Ross stood up straighter than ever in his walker and did well at the acupuncturist, sitting very still and not complaining about the needles. He had a really busy day, and was quite verbal. As Betsy put it, he loves using his voice!
Thanks to all of you for your warm wishes for Ross's good health, your prayers and your generous support. You make a powerful team, working toward Ross's recovery.
January 4, 2006 9:50 PM--I apologize for updates going up late or occasionally missing a day, but in my "other life" I write and I'm currently facing a number of deadlines that tend to be all-consuming. Thankfully, Betsy was able to send me an update tonight--and I KNOW her schedule is even more daunting than mine!
Ross was in the walker again yesterday. He still needs a lot of help moving his feet, but I noticed two improvements: he was able to stand taller in the walker, at times, and he seemed to enjoy just hanging out. When the chiropractor asked him today if he likes being in the walker, Ross smiled and nodded slightly.
This morning, when he was in his wheelchair without the foot rests, he built on his movement skills. He moved himself around the room, going from the table to the door, to the television and back to the table. He laughed the whole time.
This afternoon, he was talking and showed that he now is thinking in complete sentences. He told me, "Please stop reading. Give me food." Later, he said, "I need a huge amount of food." Later, he said, and this is a recurring theme, "I am a man." He also said, "I need water."
January 2, 2006 11:00 PM--Just a brief update to let you know that Ross had a good day today. Betsy said he seemed a bit quiet -- after dinner she talked to him about his accident, the fact he'd been badly hurt when he was hit by a car and that they were all working hard to make him better. She said he really wanted a hug after they talked.
Thank you all so much for your continuing support. Ross continues to show improvement, one small step at a time. He couldn't do this without all of you.
January 1, 2006 9:00 PM--Betsy said she was glad today that they treat Sunday as a day of rest, because it's been a busy week. Ross had a good day. He took a couple of naps but woke up laughing and talking from both of them. When I called, Betsy said he was taking a bath and getting ready for bed. Definitely a nice, quiet beginning to the new year.
When Betsy and I were talking, both of us marveled at the fact that even now, almost four years post-injury, Ross continues to make advances. We celebrate the small but steady steps he achieves, but the tragedy is that this is a young man whose life was irrevocably changed by a single act of carelessness. His friends have gone on to marry and have children and find their lives as adults while Ross continues to struggle with the basic skills of living, constantly aided by his family and caretakers. Ross had a brilliant and unlimited future ahead of him. Much of his drive now is due to the fact that he was smart and goal oriented and very competative before his injury. Those same character traits are what motivate him now, even though there are so many barricades in his way. Your support and prayers are essential to his recovery and rehabilitation. Thank you so very much for your continuing faith in Ross's long and amazing recovery.