2005 Updates

Ross was in the walker again yesterday and took a few steps on his own with his right foot, and lots with one of us picking up one of his feet and moving it. He definitely was more relaxed and showed a little more control. 2004 was the year he started eating, 2005 was the year for talking and we hope 2006 is the year for walking. He continues to make strides in other areas, particularly interaction with us and the environment. The speech pathologist is pleased with his increased ability to eat and clear his mouth more easily. Ariel was feeding him ice cream tonight and taking a few bites herself. He said, "No, that food is mine." He smiled at Ben, the caregiver, and said, "Get ready."

December 30, 2005 8:10 PM--I've just got a brief update for tonight after a quick conversation with Betsy. Ross continues to do well--they got him in the walker yesterday and today. It's quite a job to get him in without slumping, but Betsy said they continue to fine tune the process with everyone, including Ross, learning what works best. Ross is now regularly turning himself from his back to his stomach while on the mat, and can lean forward in his wheelchair, bending down over his knees and then righting himself.

December 28, 2005 8:00 PM--Betsy said they didn't put Ross in the walker because they really need a therapist on hand to help him get set up, but Ross did get a chance to use his new exercise bike. It was donated by a cyclist from Healdsburg and Betsy said Ross did really well on it. It works like a recumbant bicycle, so he can use it from his wheelchair. Rusty got clips installed on Ross's cycling shoes and Betsy said that while they were setting the bike up, Ross kept pointing to it and saying, "Me! Me!" Tonight he is really tired, sitting in the recliner and relaxing, but Betsy said he did just great on the trainer. In order to get Ross into the recliner, Betsy has to use the lift. She tells Ross that when he can stand and pivot on his own, it will be so much easier. They're planning to order a pole to install by his bed so he can learn to pull himself upright. Ross is doing so well--his progress is amazing. Thank you all so much for your prayers and healing thoughts. You are all an important part of Team Ross.

December 27, 2005 7:10 PM--Just a brief update to let you know that Ross has his "walker," or gait trainer and Betsy said he took his first steps in it yesterday. He's strapped in so he can't fall, but he was able to lift his left food twice yesterday--he picked it up and moved it forward. Betsy said he's excited and energized and really seems to relish the challenge. He also was able to stand completely flat footed in the standing frame and stood very tall and straight.

December 25, 2005 9:15 PM--I just talked to Betsy and Rusty. They had finished Christmas dinner with very dear friends, a group they've celebrated the holiday with for almost thirty years. Betsy said Ross had a good day, though he was tired and not quite as talkative. He did, however, manage to communicate quite well...someone brought shrimp, which Ross loves, and he kept saying "me, me," and managed to eat about a dozen of them! Betsy said he opened his presents and it was interesting watching him put his hand in his stocking to find gifts. Later, when Jeremiah arrived, Ross started laughing, something he hasn't done as much of this past week. However, at one point he showed signs of slipping into a petit mal seizure, so they got him away from the noise and lights of the party and he was fine. Betsy said she feels as if Ross is on the edge of some major steps forward. Your prayers have helped him before. Please remember Ross and his ongoing struggle to return to the independent young man he was the morning of June 3, 2002.

Merry Christmas. Ross is still tired a lot, but he is working hard in therapy. It took five of us to control his feet, and get him up, but he stood straight and tall for longer than ever yesterday. The therapists are also working with him on pulling himself forward while holding on to a vertical post. The next step will be standing. We are picking up the gait trainer on Monday. The technician will fit the walker for Ross, show us and the PT how to use it, and then we start a new phase. It will be a challenge for Ross, but we are encouraged by his willingness to work hard, especially when the activity has a goal and we explain how to do it. We are also ordering a vertical pole that we can put next to his bed so he can learn to get himself out of bed. Please pray for Ross as he moves into this new stage. We have a wonderful Team Ross and our therapists and caregivers are doing wonderful work with Ross. We are truly blessed. Also, I showed him a card that we had made with his picture and his name on it. I asked him who the man in the picture was. He immediately put his finger on his own name. One final story. We still do stockings in our house. Tonight, I was tired and started putting them together while Ross was in the living room. He spotted his stocking (one he has had since he was a little boy) and he began to point to himself over and over. It will be fun to see his reaction tomorrow. Thank you everyone for your love and support for Ross.

December 22, 2005 9:20 PM--Ross was still tired today, but Betsy said he seemed a little better than yesterday. One of the physical therapists working with Ross had him holding on to a pole to pull himself upright. Ross still needs a lot of help to accomplish this, but Betsy said she really believes that once he masters this he'll really take off. When they first started, Ross wasn't cooperating all that well, but Betsy sat beside him and showed him what to do. Once he got it, even though he was obviously tired, Ross really went to work.

Ross has been rather tired and definitely not as cheerful the last two days. He did well in physical therapy both Monday and Tuesday. He was so tired this afternoon that he did not do as well in occupational therapy as we have become accustomed to. We are wondering if the weather change is involved or if maybe it is related to medication. He is still interacting with all of us. For example, he stretched out his leg to block Ariel after she delivered ice cream to Rusty tonight. Anyway, hopefully a good night's sleep tonight will make for a happier man tomorrow.

December 18, 2005 8:45 PM--Just a brief update to let you know that Ross had a good day. Friends of the Dillons' came up from the city to visit and brought dinner. Betsy said they were surprised that Rass sat at the table them and ate the same food and drink as everyone and even said, "Hi, Paul," a couple of times. He was alert and involved and definitely present.

December 17, 2005 8:40 PM--Betsy said Ross had a good day today, though he woke up really sleepy and ended up dozing for awhile in his wheelchair. He said some new things today. Ben was working with Ross on the mat and asked Ross to cross his legs, as he is able to sit better with them crossed. Ross replied, "No. I want to do that later." Later on, Ben was in the kitchen and Ross wanted to get his attention. He yelled, "Hey, Ben!" Betsy said it was the first time she heard him call Ben by name in that manner. He also had a great physical therapy session yesterday, working on the ball and the mat.

Betsy said the "gait trainer" they've ordered should arrive at the end of the month. It's a very sophisticated piece of equipment that has a lot of options to help Ross to eventually walk. The way it's set up allows for adjustments as Ross learns a new skill and grows stronger, but it doesn't come cheap. Betsy said they paid $2,800 for the trainer, which is not covered by insurance or any other funding. However, the family and Ross's therapists believe it will make a huge difference in helping him to eventually walk again.

December 15, 2005 8:30 PM--When I called, Betsy was sitting with Ross, helping him to soak his finger. He's got an infection around an ingrown fingernail, so he was getting the Epsom salt treatment. Now THAT is something that's been around for awhile! Ross was also admiring his watch--the band was worn out on his Swiss Army watch, but Betsy got it replaced and said Ross appeared to be very pleased to be wearing it again. He had an excellent occupational therapy session today. He's on a regular schedule now for OT--every Tuesday afternoon and Thursday morning. Betsy said it's really making a difference. She's noticing the importance of regular rest periods for Ross, as well. He's doing much better when well-rested than he did on the days where they've tried to push through even when everyone was tired. Betsy said when Ross is overly tired she's concerned his exhaustion might bring on the petit mal seizures.

December 14, 2005 8:40 PM--Betsy said that Ross had another petit mal seizure last night. Ross was due for some bloodwork to see how his Tegritol levels are in his system, but that requires fasting which isn't Ross's favorite thing. Betsy said they managed to work it out so that he slept through most of the fasting period and then she spent some time just driving around with him in the van until it was time for his blood to be drawn. Afterwards they went out for Chinese, which Ross loves. He's doing really well an dis so much fun--Betsy said Ross is really fun right now and finds humor in everything. Thank you all for your prayers and healing thoughts, and most of all for your amazing support.

December 12, 2005 9:15 PM--I just talked to Betsy and she said Ross had another great day today, with a lot of talking and laughing. It was a busy day with a visit to the chiropractor, speech therapist and a good session of physical therapy. The speech therapist was really pleased with Ross's improvement. He also did well in physical therapy, sitting on the edge of the mat and standing with assistance. He spent time watching Ariel cook dinner. Betsy said it's like more and more of the "old Ross" is coming back. That "Ross" has been gone for over three and a half years now--a long, long time.

December 11, 2005 8:10 PM--Betsy said today was absolutely wonderful. Ross was talking and laughing all day long. She said she had no idea what he was laughing at a lot of the time, but sometimes he'd just look at her and break out in laughter. At one point he said something that sounded to Betsy like "Bust my butt." She said she repeated it and said,"Ross, did you say bust my butt?" He looked at her and said, "Now that's a dirty thought!" He also asked a lot of the same questions he always asks: What's my name? Am I at home? and repeated the statements, "you are my mother" and "you are my father" a number of times.

Ross also fed himself scrambled eggs at breakfast this morning, eating his entire breakfast with his fork in his right hand. He still has limited mobility in his right elbow and will probably never be able to fully extend it, even after the corrective surgery. Betsy said this was the first time she knew of where Ross had eaten an entire meal, feeding himself using a fork in that hand.

December 10, 2005 7:20 PM--I just talked to Betsy and she said Ross had a great day today, so it sounds as if there weren't any repercussions from the two seizures he had last night. Ross told his caretaker Ben that he wanted to sing, then said, "I love food, I want food." Betsy said she picked up some calimari salad for herself at the deli today, and gave Ross a little of it. Then his lunch was brought in. He was eating his meal when he looked up and realized Betsy was eating the calimari. She said he set his utensils down, looked at Betsy and said, "FOOD!" Obviously, she was eating the "real" stuff! He had a good session in the standing frame where he ate his breakfast, but Betsy said she could tell he was getting tired and asked him if he wanted a nap. She said he didn't seem to understand, so Rusty put his hands together at the side of his head as if sleeping. Ross nodded in agreement and ended up taking a nap and sleeping for about an hour.

Please, during the busy holidays, remember to say a quick prayer for Ross and his loved ones. Therapy goes on, day in and day out, and for every two steps forward there is often at least one back. Your support is more important now than ever before, and means so very much to Ross and his family.

Ross had a good OT session after a slow start. We realized afterward that we didn't do a warm up with something fun and started with a hard task. Ross was really resistant until he succeeded at the first task and then he was very cooperative and successful. This is a lesson we will remember. When we went to the acupuncturist in the afternoon, Ross sat very still most of the time so the doctor could insert the needles. Eating bits of banana during the session also helped.

Today we went to meet with the salesman about the walker we want to buy for Ross. Our PT met us there and we are pleased with the particular model that they agreed on. Ross was sitting on the mat with our caregiver behind him and we were all talking about him. I noticed that he kept moving around, but positioning himself so that he was supporting himself much of the time. He leaned toward me and tucked his right arm under my arm. Another time, he leaned forward with his head over his knees and supported himself. We

Later while having dinner, he looked at me and said, "You are my mother." To Rusty, he said," You are my father." Rusty then looked at Jeremiah and asked Ross who he was. Ross said, "My brother." After having dinner in the standing frame and playing ball with us, Jeremiah took him back to bed to prepare for his bath. I happened to go into his room while Jeremiah was drawing the bath and realized that Ross was having a Petit Mal seizure. I immediately turned off the television, turned off the overhead light, called

Rusty and got a wet washcloth. We think he had two Petit Mal seizures lasting a couple of minutes each. However, unlike other times he was moving, talking and interacting between and after the seizures. Jeremiah walked out of the room for a few minutes and Ross became alarmed. I told him Jeremiah was coming back and would stay with him through the night. He was definitely relieved when Jeremiah returned. He said many times tonight, "I want to go home." I think the person who wrote us that he thinks Ross

December 7, 2005 9:10 PM--Ross did well today. He was talking a lot and this afternoon spent time looking through a catalog with Betsy. She said his sheets wear out because he spends so much time in bed, so they were looking for some new ones. She found a set with blue skies and clouds that Ross really liked. He pointed at the picture and said "Blue." He also agreed that he really liked them. Betsy said they spent some time watching the second half of a Christmas movie and just enjoyed a quiet evening together. Betsy said it's a rare treat when she and Ross can just relax together, as so much of his time is spent in therapy with other people around doing their thing. Betsy said Ross really seems to enjoy the Christmas tree and they plan to take him out for a ride to look at the Christmas lights around town.

<Rusty Dillon> for an email link to Ross's dad. All they need is your regular "snail mail" address and your name will be added to the list. Thank you all so much for your continuing support. Your prayers and healing thoughts and your wondeful wishes for Ross's continuing recovery are especially welcome during this holiday season.

December 6, 2005 9:40 PM--Betsy said today went pretty well, in spite of the fact that Ross was awake until one a.m. and really tired today. He still had an excellent session in the standing frame where he had his breakfast. They've made an adjustment in the placement for his feet and Betsy said it seems to help.

Ross also had a good occupational therapy session. The therapist has started making a list of things he wants Ross to accomplish, then crosses them off when they've been done and "rewards" Ross with sliced bananas he has to eat with a fork. The therapis has Ross working on grasping and releasing, including picking up small objects with a set of tongs. This is just his second day working with the list, but Betsy said Ross responds well to the reward system. He's also been working with "form" puzzles that have little knobs for handles so he can pick up the individual pieces. He's doing really well.

Ross did pretty well in various therapies even though he was tired. When the PT came at 3 PM, Ross said in four separate statements, about a minute apart. "Need sleep." "I am tired." "Go home." "Now." He pulled it together, and sat on the edge of the mat for a long time with great trunk control. He even partially stood several times and stood completely once for about three to four minutes. He did not ask for food even once. Today, he again did something he had done for the first time on Friday. He hit a ball with a bat in his right hand and used his left hand also to hit a ball repeatedly.

December 4, 2005 10:00 PM--Betsy said Ross slept until noon today. He got up for breakfast, but went back to bed. However, when he finally got up he was very interested in the Christmas tree decorations and quite talkative. Betsy said he smiled a lot and was really fascinated with a small set of chimes, which ended up attached to his cart where a lot of his "supplies" are kept.

December 3, 2005 9:00 PM--Betsy said Ross was really talkative today. He's also drawing more "interesting" pictures and signing them with his name. Betsy said they're concentrating on following the neuropsychologist's suggestions regarding the importance of routines and getting Ross into the alpha wave pattern before bed. For instance, no TV or computers on for an hour before he goes to bed, then quiet talking and calm activities as he goes down. Betsy said she's been reading the Bible to him, they pray and talk about the day, all very calming, and so far it appears to be paying off. Ross is sleeping much better.

December 2, 2005 8:50 PM--Just talked to Betsy and she said Ross is having a really good day. Betsy's on her own with him tonight, and when I called, she was trying to get Ross to brush his teeth, but he wasn't cooperating very well! Today Betsy and Rusty met with a neuropsychologist who works with TBI patients. He said that Ross's seizures are caused by the transition between alpha (at rest) brain activity, and beta, or alert activity. He said Ross needs consistency and repetition during this period where his brain is essentially healing and coming back on line. He's doing so much better than anyone expected, that it's exciting to see the progress he's making now.

Ross had a good day yesterday. He worked with the Occupational therapist in the afternoon and he did very well. His grasping and releasing has improved and his work with the form puzzles is also really good. Ross also wrote his name completely by himself - very exciting. He was jerking a lot yesterday and some today.

We have had a good time with Ross over the last week. Ross really had a blast with his nieces and nephew. They climbed into bed with him to cuddle and watch television. One day, Ross was sitting in his chair and I was giving him his supplements in the raw vegetable concoction we euphemistically call "Smoothie". Ross would take a bite, then kiss Natalie, take a another bite, and give Natalie a kiss on the cheek. This went on for at least five sets. On Friday, I insisted on a family picture. All of us, Rusty, Ross, Ariel, Liz and her family posed while all of our guests took pictures. At one point, Ross started leaning toward Liz's little Andrew, just to be close. Not necessarily the picture for our Christmas card, but a wonderful picture from year 2005.

On Sunday, I was trying to get Ross to drink his morning coffee at lunch time. He said, "Only in the morning." I asked him, "Do you mean you only want coffee in the morning?" He nodded, "Yes" When I told the speech therapist about it, she said that that is significant because it shows an awareness of time which frequently disappears in people with head injuries. I told her that he frequently says, "No, not now." when I am trying to give his something. She said that is also temporal awareness. What a wonderful thing to know. Later, on Sunday, Rusty was pretending to nibble on Ross's toes, something he used to do with the children when they were little. Ross said, with a grin, "No, are you trying to eat me?"

November 22, 2005 9:30 PM--Ross's siter Liz and family arrived today while Ross was in the middle of his occupational therapy session. When he spotted everyone, Betsy said it was just wonderful. He was so excited to see the kids and definitely recognized everyone. There will be 29 for dinner on Thanksgiving, with Ariel doing most of the cooking, so the next few days will definitely be busy in the Dillon household! Betsy said Ross continues to do really well with grasping and releasing with his fingers and using his left arm. It's been slower to come back because of the extensive brain damage on Ross's right side.

November 21, 2005 9:10 PM--Ross is still really congested but he's doing well and had an excellent day today. Betsy said he's talking more and they carry on long conversations now. One change Betsy has noticed is that Ross used to say "I am a boy." Then he was saying things like, "I'm a boy. Will I be a man?" Today, he kept repeating, "I am a man." Betsy wonders how much of this is his fragmented memory beginning to come together. He had an excellent physical therapy session and a really busy day, but as Betsy said, it's all good. He continues to show more improvement every day. All of his steps are forward.

November 20, 2005 9:10 PM--Betsy said Ross had a good day but he was really tired. He woke up at 4:30 and really never went back to sleep, so by this evening he was telling everyone to go home and saying words like "tired" and "sleep." Betsy said he was talking a lot today. His pediatrician and wife came by for a visit and Ross seemed to recognize his doctor. They brought pumpkin pie, which went over really well with Ross! Betsy said he definitely seems more interactive and well aware of what's going on around him. He's also lifting his left hand by raising his shoulder. Another thing, when Betsy put him on his stomach in bed, he rolled over to his back--twice. Thank you all so much for you continuing supports and your prayers for Ross and his loved ones.

November 19, 2005 9:20 PM--I just talked to Betsy and she said Ross continues to do well. He had an excellent session with Dominic in occupational therapy and another with Ben in physical therapy. Ben wanted Ross to do something with his left arm, which still has some neurologically caused weakness. Ross said, "I have no muscle now." At another time, when Ross was being wheeled out of his bedroom, he said, "Turn off the light in my room." Betsy keeps a notebook of all the things Ross says throughout each day, and his sentences are becoming more complex and more apropos to the situation, although at one point today he said, "Give me my hat."

November 17, 2005 9:15 PM--Betsy said today went pretty well. Ross is doing a bunch of new things and his fine motor skills are definitely doing great. Ross can not only put his thumb and index finger together, he can also pull them apart, opening and closing them at will. This will facilitate his picking things up. I can still see Ross in his wheelchair with that right hand frozen in position up under his chin, and it wasn't all that long ago, so this is obviously a tremendous step forward. At one point, Ross was sitting in his chair, staring at the standing frame. Betsy thoughhe seemed to be looking at the handle. When she asked Ross if that's what he was staring at, he said yes. Betsy moved his chair closer to the frame where Ross could grab the handle and move it back and forth. She said he did that for quite awhile, which is a whole new form of exercise for his occupational therapy skills.

Later the therapist had Ross feeding himself with his left hand. His first inclination was to dip his head down to get to the food, so Betsy put a mirror where he could see himself, and his feeding immediately improved. He also appeared to recognize himself, something he was not able to do before, and then made faces at himself in the mirror.

Ross said "Take me home." Betsy wasn't sure if he meant he wanted to go to bed or if he was confused about where he lives. She got his graduation picture out and showed it to him and Ross said something about it being his brother. When Betsy said it was Ross he seemed to recognize himself. The story behind the photo is a typical Ross tale: He kept putting off getting the picture taken until Betsy threatened to cut off his expense money. She got her picture!

November 16, 2005 8:00 PM--Ross is really congested with a bad head cold, but Betsy said he still had a terrific day. Dominc came for physical therapy and Ross did really well in spite of the congestion and a voice that sounds like a foghorn. Dominic wanted Ross to pick up blocks and put them in a container. Ross, perfectly in tune with the stage of development he's in at this point of his recovery, wants to put things in his mouth. He would pick up the block and then put it in his mouth. Dominic asked him to put them in the container. Ross picked up another block and it went into his mouth. Then he looked at Betsy and said, "You're my mother." Betsy said, "Yes, I'm your mother and I want you to pick up those blocks and put them in the container." She said Ross picked up the last four blocks and put them into the container!

Tonight at dinner, they put Ross's fork in his left hand and a spoon in his right. He still needs a little guidance with his left hand, but Ross managed to do really well feeding himself. Thank you all so much for your amazing support. It has made such a tremendous difference in Ross's recovery.

November 15, 2005 9:25 PM--Just a brief note to say that Ross had a really bad cold. Betsy said he's quite congested and really feels awful, though he still had physical therapy today and did quite well. The therapist had him partially reclining and he had to come forward to eat ice cream, which he did beautifully. Betsy said Ross was telling everyone today that he loved them. No matter what he's going through, he still maintains his good nature. Please keep Ross in your prayers as he continues with his long recovery.

November 14, 2005 9:20 PM--The physical therapist worked with Ross this afternoon. She had him standing without the standing frame. Betsy said he stood tall and straight and "it was so beautiful." The PT helped support Ross for balance, but he was standing on his own...and he managed to eat ice cream while he was doing it! They also worked on the exercise ball, with Ross draped over the ball on his stomach and his feet pressing against a wall. He was able to straighten his legs out and put pressure on his feet. Betsy said they're in the process of having a gait trainer shipped to Santa Rosa so Ross can try it out and see what works best. All of this is, of course, a prelude to walking.

I am feeling better. I still have the cold, but it is better. I think we are staying home today in order to make sure I don't get worse. I wanted to tell you about our Saturday visitors. It was a mother and two of her daughters, a fourteen year old and a one year old baby. Ross loved watching the baby; he watched her and laughed constantly. When he was sitting on the mat with our support, the baby was sitting next to him. He asked her, "Who are you? What is your name"? Before they left he was blowing kisses at all of them and saying "I love you." Ross has always loved children and was looking forward to having his own. Our oldest daughter and her family will be here next week. While her children are not babies, I think Ross will enjoy having his nieces and nephews here.

November 12, 2005 9:30 PM--Betsy had a friend visit today who brought her one year old. Ross was fascinated by the baby. He would ask, "Who are you? W hat's your name?" and really seemed to enjoy watching the activity. I talked to Rusty and he said it was really a good day for Ross. He's alert and involved and doing well.

Ross is doing extremely well pedaling. He pedaled 90 minutes in the morning and 45 minutes late this afternoon. He also, had an awesome session with Jeannette, the physical therapist. It took 4 of us working with Ross, but he sat on the big exercise ball, bouncing some, eating ice cream, playing with knocking a plastic cone off Ben's head. He then, with help, extended his feet and lay back on the ball, then up, then down again, stretching his lower body. After that he lay prone and propped his head and chest up with

November 10, 2005 8:20 PM--Betsy said Ross was doing pretty well tonight, though he seems tired. He shared a tangerine with his mom and ate his dinner in the standing frame. He also played ball, knocking the ball of the tray on the standing frame and Betsy retrieves it. She said she needs the exercise! Betsy got a sippy cup for Ross and he likes it. She's hoping he'll be able to hold it by himself.

November 9, 2005 8:30 PM--Tonight when I called, Betsy and Rusty were away at a meeting and I spoke with two of Ross's caretakers, Lisa and Ben. I don't talk as much as I should about the wonderful people who care for Ross so much of the time. I think Lisa has been there almost since Ross first came home--I'm not certain how long Ben has been a part of the team, but I've heard Betsy talk about how terrific he is as well. Ross has had an amazing group of people helping him--I know Jeremiah is like a part of the family, a gentle, caring man who is physically strong enough to handle a young man Ross's size, and I'll need to ask Betsy who else is part of the amazing group of folks who are such an important part of Ross's recovery.

Ben gave me tonight's update and said that Ross has been active and talking. Ben had on his earphones and Ross said, "Let me listen." His comments are becoming more and more appropriate to the situation, though Ben said Ross was still telling everyone to go home! He was also moving his shoulders, shrugging first one, then the other, mimicking Lisa.

Sorry to be tardy with the update. The last two days were packed with appointments and things to do. I was set to e-mail last night before going out, but I had competition for the computer. On Monday we saw the neurosurgeon. The size of the ventricles in Ross's brain have not changed and it is too risky to further reduce the shunt pressure setting. However, the doctor continues to be impressed with Ross's progress. This was yet another occasion when we realize that story of Ross's progress is not in the CT scans. They are a record of the catastrophic injuries that Ross is overcoming.

As we were getting in to the car, his physiatrist from Kentfield walked by. She has not seen Ross for two years and I think I can safely say she was amazed. One of the tings she said was, "He looks so different." He was not the limp hyper spastic rag doll whose head was always falling forward that she had known. Ross has been pretty tired and quiet for the last few days, but after we came home I was singing "One, two buckle my shoe" to him and clapping. I wanted him to sing with me, but instead he said "clap". Pretty awesome. Yesterday, before we went to acupuncture, I reminded him that we were going to acupuncture and he needed to hold still for the acupuncturist to put in the needles. Each time I said that, Ross nodded yes. When we were at the acupuncturist's office, Ross really worked at being more still and it was obvious. It was also helped by our giving him rewarding bites of banana after each needle was placed.

November 6, 2005 9:30 PM--Just talked to Betsy and she said Ross has been really subdued for the past few days. Rusty has noticed it as well and said it's almost as if he's sedated. He's still very congested. Ross slept until 10:30 this morning and didn't say much all day, though Betsy said he did say, "I love my parents." Later he asked for something to eat, and Betsy told him he'd have to wait another hour. She said, "We don't want you to get big, fat and wide," and Ross replied with "Five million and trillion and stop." Betsy said she came back with a silly answer and they just talked nonsense for awhile, but both of them were laughing.

Last night's fundraiser was a great fun and we saw old friends we hadn't seeen for a while. Our thanks to the the four ladies who put it together and to everyone who helped make it happen. We were especially thankful for the words of support and encouragement we received from people at the benefit.

Ross is okay today. He is much more subdued, very congesteded and probably like all of us needs a good restful weekend. We so often forget how tiring everything can be for a recovering brain injury patient. He is continuing to progress with more flexibility in his hands and moving objects like puzzle pieces with his hands, putting discs into a slot and picking up small objects with tongs and putting them into a container.

November 3, 2005 8:30 PM--Just a quick reminder that tomorrow night is the dinner dance presented by the Faith Christian Academy Alumni. For details follow the link in the yellow box. I talked to Betsy a few minutes ago and caught her in the middle of a "mom lecture" to Ross, who is becoming quite conversant in the word "no." I think she was reminding him there are times you can be agreeable, too. Betsy said Rusty and Jeremiah were working with Ross on using his feet to move his wheelchair forward. He's pretty good at going backward. Ross continues to show progress, far beyond what was ever expected. It's always fun to call Betsy and find out what new skills Ross is mastering. Thank you all for your continuing support and your wonderful healing thoughts and prayers.

November 2, 2005 9:30 PM--When I asked Betsy how Ross's day was, she said he was grumpy today. I had to laugh because I was too...must be the way the stars are aligned, right? Ross has a lot of congestion and Betsy said she wondered if the coughing could be the result of scar tissue from the trach that was in place for so long. This evening around six Ross had a petit mal seizure, but he didn't seem to suffer any ill effects afterwards. When I was talking to Betsy, she said Ross was in the other room talking to his caregiver Lisa.

November 1, 2005 9:00 PM--Ross was tired this morning, but he saw Dr. Kurn and the neurologist was really impressed with Ross's advances. Betsy took Ross out for lunch after his visit and he had a chicken enchilada he thoroughly enjoyed.Tonight Ariel made him curry but it was a little too spicy for Ross...he actually said, "That's too spicy." Betsy said she fixed him some soup instead. Later when Betsy was using the sling to move Ross into his bed, he said, "For the love of heaven!" He's definitely getting more talkative! He also said, "I'm in my parents' home, I love my parents, and I love you," to Betsy.

I had sent a picture of our daughter in law to Betsy--Melanie is about five months pregnant and definitely showing. Betsy printed the picture and put it up for Ross. He looked at it and said, "Oh no!" Betsy explained that Jon and Melanie were married now, and expecting a baby. She said once she told Ross that, he smiled. The neat thing is that he obviously recognized Mel...for the longest time, it's been as if he didn't remember a lot of people from before the time when he was injured.

October 31, 2005 10:00 PM--Today was really special. Betsy was taking Ross from the chiropractor to the speech therapist and Ross was giving directions! Not only that but he was right! He told Betsy where to turn, when to go right, when to go left...and he knew the way there. It was really neat. Ross's improvements come in bits and pieces, but then a day like today comes along and it all seems to be so special. Thank you all for your prayers and healing thoughts and your amazing support through Ross's long recovery.

October 30, 2005 8:35 PM--Hope I get this right! It's only 8:30 my time, but with Daylight Savings officially over, I think it's much later! Ross had a good day and did really well. Betsy said he's becoming more independent when he eats, digging around for things he likes and feeding himself with a lot more ease. Betsy also said she put up some pictures today that had been stored away, things Ross really likes. She felt that a lot of them really jogged Ross's memory. Thank you all again for your support and your healing prayers. Ross is doing amazingly well, and your support is a large part of that.

October 29, 2005 9:25 PM--Ross had a really good day. Betsy said he's "really right there." She said they're always having to get Ross up in the morning before he's ready, and today was no exception. They had him up and eating breakfast by nine. Jeremiah was working with him and explained to Ross that they had to get things done before Dominic came at ten for therapy. Ross's response was a heartfelt, "Oh, no!" Betsy said it was totally apropos, and a reminder that Ross really didn't want to be working by ten a.m. on a Saturday morning.

He had a great session with the physical therapist later in the afternoon. She had him up on the exercise ball on his stomach, moving his arms and legs as if crawling. Betsy said Ross slept well last night and had a great session in the standing frame. All in all, it was a good, productive day.

October 27, 2005 9:50 PM--Betsy was away most of the day today, attending a meeting on the new drug plan for Medicare. She said as far as she can tell, it's absolutely awful and a classic example of what happens when government gets involved. From what she gathered after today's meeting, it's terribly unwieldly and difficult to negotiate. There were representatives from social security, medicare, a watch-dog committee and others who discussed the way the program is supposed to work. Ross will have to make copayments as well as pay premiums for his prescription drugs. He'll be assigned to a plan, but with no assurance that the particular plan he is in will provide the medications he's supposed to take. It's one thing for someone like Ross who has a wonderful support group to deal with the paperwork and red tape, but both Betsy and I were asking one another about the person with a brain injury who is trying to make it on his or her own--who advocates for them?

Betsy didn't get home until about five and she said Ross was batting at balloons and telling them to go home. When he saw Betsy, he immediately said he wanted food, but it was too early for dinner. Betsy said she told him he'd have to wait until dinner, and he said, "I need food. More food. Come back. I'm dying here!" It looks like the melodrama is returning! Betsy said Ross used to sing words and make up silly songs for things before his accident, and he's beginning to do that again. He's also drawing. Today Jeremiah was telling him where to move his pen, and he was following instructions.

After being quiet and tired yesterday, Ross was more alert, more talkative, funnier and affectionate today. He watched about half an hour of the world series tonight and appeared to be interested the whole time. When Lisa arrived with her little dog to take care of him tonight, he and the dog were alone in Ross's room and I heard him tell her repeatedly, "Go home".

October 25, 2005 10:30 PM--Betsy said Ross had a good day, but different. He slept for most of it! Took a few naps, even fell asleep in his chair around ten this morning. He did say some new things. When Betsy and Jeremiah were trying to get him to play ball, he said, "I quit. I don't want to play." When Ross was in his bed sleeping, he seemed really relaxed, stretching and twisting his body comfortably. At one point, he slid down in his bed more than he wanted and said, "Pull me up." When Betsy was telling me about their day, it made me think of when our son was small and would sleep most of the day and all night just before a growing spurt. It made me wonder if Ross might be doing some new healing that's wearing him out?

October 24, 2005 9:10 PM--Had just a brief chat with Betsy tonight. Ross is doing well. She said the best way to describe him is that he's moving closer all the time to "normalcy." He's more connected, more interactive. Smiles a lot--today he was in the van looking at Betsy in the rear view mirror and when she caught his eye he said, "I love you." At one point when they were at home, Jeremiah had gone to do errands and left some classical music on fairly loud. After awhile, Betsy turned it down and Ross said, "Thank you." Nothing big or dramatic happened, but Betsy said it was just a nice, "normal" day. I know that it's been a long time since they've really experienced anything remotely close to normal, so a day like today must be very precious.

October 23, 2005 8:20 PM--Just talked to Betsy and she said things are going well and today was an especially nice day. Ross spent a lot of the day in his recliner and they all just sort of hung out together. Betsy said she'd sit next to him to talk, and a couple of times Ross turned to her and said, "Go home." He's changed his "give me food" request and now says, "I am so hungry. Don't try to make me dead." He's obviously improving if he's perfecting the guilt trip! Later, Betsy said Ross asked her, "Are you my mother?" When she said yes, he replied, "I am a kid." They watched the World Series and she said Ross would occasionally smile at things that happened in the game. He's very attentive now when he watches television. They even watched an old Alfred Hitchcock movie.

Betsy said they found a representative for the company that carries the type of "gait trainer" they're interested in for Ross. This is a device that helps wheelchair bound patients strengthen their legs for walking. The dealer is in Santa Rosa and will be bringing a couple of different models up for the Dillons to look at. They're very expensive at $3500, but if the device works, it should help Ross move toward taking his first steps since he was injured.

Ross is sleeping well again and is sleepy in the morning. His sentences are a little more complex, as in "Come back, and bring food." His strength is very good and he is almost rolling from stomach to back. I think he is a little down these days, but he reaches out to hug me and give me kisses. He is also asking specifically for water now, instead of a generalized "Give me food."

October 20, 2005 8:50 PM--Ross is doing fine today, though his blood pressure was a bit elevated this morning and Betsy said he may have had a very minor petit mal seizure this evening. Nothing came of it, though, and he went on to do a good forty minute work out on the mat. He's doing a lot more talking, more complex sentences. Tonight he asked Jeremiah for some food and Jeremiah told him later, when they weren't busy. Ross replied, "I don't want to hear that."

Working on the mat, Ross is able to kneel while supported by foam wedges, then uses his arms to pull up and arch his back. He's definitely getting stronger. Betsy said they're looking at "gait trainers," to help him with is walking. I fint that amazing, to realize they're working on helping Ross to walk when it wasn't all that long ago he couldn't even stand.

October 19, 2005 8:40 PM--Betsy said Ross appears more subdued lately and is not talking quite as much, though he's definitely aware and very affectionate and smiling. She attributes the lack of conversation to the fact he appears to be moving into more complex speech--getting away from the simple declarations and using bigger and more advanced language. For instance, today Betsy was trying to get Ross to let her irrigate his sinuses to clear some of the congestion. She offered him a choice of the "store" variety of solution or the homemade. Ross's reply? "Neither." Just a few days ago he might just have said no. He's having some trouble enunciating the more complex words, much like a child learning to talk, though he does still say a lot of the "clear" words. "That hurts" is obviously a favorite, and he says it a lot, even when someone barely touches him. It's almost as if it's become a game with him.

When I talk to Betsy, I often find myself thinking in terms of the new ground she and Rusty and Ross's caretakers and therapists are breaking. So much of what Ross is learning to do was never even considered by his doctors, who essentially felt he should be warehoused in a nursing home, just one more patient in a semi-vegetative state. If you ever have doubt the miracle of prayer or the importance of faith, watching Ross's slow but steady steps towards recovery are about as tangible a proof as you'll ever see.

Ross had a quiet day. We had to wake him for physical therapy. Both he and I are very congested again--maybe the wind has stirred up hay fever triggers. His drawing has taken a step forward. He has been drawing lovely squares and circles. He drew something with sweeping swirls that looked a little like abstract people on Tuesday.

He has seemed subdued still. Last night, after dinner, we sat in front of the wood stove with our feet on the hearth and I talked to him about the farm where he grew up. He smiled at one point, and began to look much happier. Word retrieval is the next hurdle. This will mean more conversation about thoughts and feelings.

October 17, 2005 10:00 PM--I talked to Betsy a bit ago and she said Ross is doing well. His physical therapist referred to this time as a window of opportunity when Ross is progressing rapidly and he said they need to take advantage of Ross's eagerness to improve his skills and coordination. Ross was able to pick up a small pill today and hand it to Jeremiah, something he would have been incapable of just a short time ago. His speech therapist said Ross is clearing his mouth better and working the left side much better. Today Ross even reached out with his left hand to touch a small music box that Betsy set up, one he had liked when he was small. Betsy said he's also becoming very fastidious--today when he was eating and a small piece of food fell off the plate and landed on his tray, he flipped it off onto the floor!

How can the last few days have passed so quickly? Ross is definitely feeling better. His smiles and laughter were missing for a couple of days, but tonight I was able to see a big lopsided smile and laughter. He was saying, "you ...you", which often means "I love you." Then he said something I couldn't understand and laughed. He ate a complicated dinner in terms of chewing and clearing his mouth. This is something I usually don't do for dinner, but he handled it well. He really wants to feed himself now and he does a pretty good job. We have some food fall off his spoon, but we usually hang a clean towel around his neck (I sometimes remind him of the napkins when eating seafood in Boston) and spread the towel out. So when food falls off his spoon, It falls on the towel and I put it back in his bowl. He also is back to drinking both his tomato juice and his water really well. Last night, Ben gave him water and Ross choked on it. He coughed for quite a while and when it was over, Ross said, "That feels terrible."

October 12, 2005 10:30 PM--Betsy said today went well. They took the acupuncture needles out of Ross tonight and he seemed more interested than upset by the process. Betsy said he's not talking much, but continues to be more "present," and aware of his surroundings. There were also a couple of firsts today: Ross asked Lisa (caretaker) her name and then, without prompting, said his name was Ross Dillon. In the past, someone has had to ask him or prompt him to say his own name. He's also lifting his left foot and moving it more. Twice today he lifted it and rested it on a footstool next to his right foot. In the past, he's used his right foot to help lift his left, but Betsy said he's doing it by just lifting his left. He's also moving the index finger on his left hand.

October 11, 2005 9:40 PM--Ross is feeling better, though he's not as talkative. However, Betsy said he's much more present. He had his first appointment with a new acupuncturist today, one trained in a "neuro-scalp" technique where the needles are placed in the midline of the head and left in. So, Ross came home with the needles still implanted. Betsy said he'd reached up to touch them, but hadn't tried pulling them out--yet! His control of his hands is improving so much, however, that may not be far off! Betsy said his ability to open his hands has dramatically improved. Betsy said they've also talked with a neuropsychologist about working with Ross on some of the things that could become a concern later on--for instance, his constant demand for more food. That could be a real problem down the line, but this physician works with behavior and stopping bad habits before they become seriously ingrained.

October 9, 2005 8:35 PM-I just talked to Betsy and she's still not feeling 100%, but not as bad...and Ross is just about the same. Betsy said she touched his stomach and asked if he still felt yucky there, and Ross said, "Yeah." He hardly slept at all last night and has been talking to himself a lot today, playing with words, adding conjunctions. Betsy said he doesn't seem to have any lasting effects from the seizure, other than maybe moving on to a new level of improvement. She said he's not talking constantly as he was, but what he says is much more relevant to the situation. Thank you all so much for your continuing support, your healing thoughts and prayers for Ross. You mean so much to his continuing recovery.

October 8, 2005 8:50 PM--Betsy's still a little under the weather with the same bug that Ross had, but he's beginning to feel better. The big thing, Betsy said, is that Ross seems really happy. He's laughing and smiling all the time and is definitely more aware. Today Ariel showed Ross a card she'd gotten for friends of Ross's who are getting married. Betsy got out a photo of Adam, Ross's friend, and she said Ross recognized him. He kept touching the photo and definitely appeared to know who Adam was.

October 7, 2005 8:45 PM--I just talked to Betsy and Ross is doing much better tonight. He was able to get his cat scan done today, though there was some sort of problem with the computer and it took much longer than usual. He was on the table for at least half an hour, but Betsy said he handled it well. Tonight he's still tired, but a lot of fun. Betsy said his sense of humor is definitely there. He's also been talking a lot, but quietly and to himself. All in all, he's doing much better. Thank you all so much for your healing prayers and your amazing support for Ross and his loved ones.

Ross's vital signs are much better. His pulse down to around 80 and his temperature close to normal. He refused to have his yogurt at 5 AM. We are trying to get an order for a CT scan in Santa Rosa. The appointment in Marin is a follow-up on the shunt pressure adjustment done about a month ago. The trip to Marin is much longer than to Memorial. I have a call into the on call doctor.

Ross appears to be on the other side of this one. Had a good check in with Dr Kern. He thinks it may be the virus that Betsy also has. Ross is now resting well, heart rate and fever going back to normal. And Thank God we have Liza on the job tonight. So we've got a great Doc and nurse on the job. Blessings in the midst of storms. If Ross is doing ok tomorrow AM, we're taking him down to Marin General for his scheduled CT and xray, as per Dr Kern's suggestion.

October 6, 2005 8:45 PM--I just called Betsy, expecting positive news this evening but it's not good. Ross had just had a six minute seizure, his pulse is around 150 now and he's running a 102 degree temperature. The neurologist told Betsy that a viral infection can cause seizures, so they're hoping that's all it is, but your prayers for Ross's health would be much appreciated. Thank you so much. You have no idea how much the family and Ross depend on your unfailing support, healing thoughts and prayers for Ross's recovery.

Ross had a good day yesterday. He had two very good sit/stand-standing with the therapist holding him with the gait belt. His left foot and leg still need to become stronger, but he has made considerable progress. His work on the mat is increasingly good and he is doing more of the work to feed himself with a fork in his left hand. His ability to scoop his food from the bowl with his right hand is very good.

Today, however, he is sick. His heart started pounding while Ariel was feeding him his breakfast. His vital signs were high, and his temperature is now a little over a hundred. I think he has an intestinal virus. He is sleeping a lot today with bed rest, and definitely very quiet. I doubt that it is serious, but it is so unusual for him to be sick that I am sticking close to him today.

Ross has been awake since 2 A.M. this morning, He talked a lot through the night. He has not smiled or talked as much today except to say "Go Home" and "Give me food." However, when we were waiting for the chiropractor, I was playing the five little piggies on his fingers and I received a big grin and chuckle from him. As the chiropractor was adjusting him with his activator, Ross was saying, "It hurts." But when I started Playing with him by touching him in different places, and asking if it hurt, he started to laugh. He is making progress in drawing lines both vertical and horizontal on paper. I could tell he was tired as the day went by, but he did not sleep. I hope tonight brings restful sleep the whole night.

Ross was not as noisy yesterday and not as verbal, but he was jovial and full of fun. When Rusty was touching him , he started yelling "Stop, that hurts." Rusty said, "Ross, that doesn't hurt." Ross then laughed. Ross and I watched our usual Hallmark Channel mysteries, and Ross was sweet and smiling during the whole time. Afterward, he said, "I like watching television." He also said frequently, I don't want to die. I want to live." He said it three or four times during the day. At dinner, I gave him a grilled chicken breast, and pulled the chicken off the bone. Even though chicken is hard to chew, he ate the whole thing along with the vegetables and actually objected when I offered to grind it up to make it easier to eat. Betsy

October 1, 2005 10:00 PM--When I talk to Betsy, I get the feeling it's often the small things that show the greatest gains. Ross's hands, always so tightly clenched, are relaxing by the day. He's moving his left hand more, which is such a good thing. Becuase of the nature of Ross's injuries he has what is called a "left side neglect." The massive hematoma was on the right side of Ross's brain and that affects movenet on his left side. However, he is beginning to move his left hand more than ever.

September 30, 2005 9:30 PM--In spite of not sleeping well last night, Ross had a fairly good day. Betsy said he was tired and not as successful with his physical therapy as he usually is, but he did manage to follow instructions, including lying on his back and raising his bottom up to form a bridge. Betsy said he was able to get a few inches off the ground.

Yesterday Ross was practicing "sit/stands" from the kitchen chair. The therapist, using "body mechanics," not actually lifting Ross, helps him into a standing position. He was able to do it once, but then had trouble. Part of the problem is the ability to bear weight on his lower legs, but Betsy said he was also having trouble grasping the mechanics. Betsy had the therapist help her into a standing position while Ross watched. After that he did much better. He's also been doing more "writing," which consists mostly of holding his pen and practicing circles and lines to help his coordination.

September 28, 2005 8:15 PM--I just talked to Betsy and she said Ross is doing so well it's really wonderful. He's working harder than ever on the mat exercises and even asking that things be increased. Betsy said he's calmer, laughing and smiling a lot and even joking. He's been really congested and Betsy said today when they were trying to clean his nose, he yelled, "Don't, that hurts," really loud. Then he laughed and said very quietly, "It doesn't hurt."

Since he's been demanding food so much, Betsy has been discussing weight issues with him, reminding Ross that he likes to be thin and that if he eats too much he'll put on a lot of weight. It's not uncommon for brain injured patients with short term memory loss to forget when they last ate, and then think they need to eat again. One of Ross's doctors said the concept might be too hard for Ross to understand right now without pictures of people who are thin and those who are overwieght to help him understand, but Betsy doubts that. Tonight when Betsy reminded Ross (without pictures) that if he eats too much, he'll gain weight, he said, "I want food. I don't want to get thin." Obviously, he understands the concept...he just doesn't agree with it right now!

Ross is less noisy this week and he also seems a little calmer. Because he was asking for food so much, and that could be because his brain doesn't signal when he is full, or he forgets that he just ate, I have been cooking more vegetables for him and he is saying "now "when he is finished eating. Although he may say, "I need food" five minutes later. He let the chiropractor give him an adjustment without twisting around on Monday. We took a lot of food to the the speech therapist's office afterward, and Ross ate and ate before he was full and again we noticed that, in contrast to when we first arrived, he became much calmer. Yesterday, he asked what his name is several times and continued to say, "I don't want to die."

Today when Jeremiah had Ross on the mat and was trying to get Ross to roll to his stomach, Ross didn't want to. Later, when we put him in the prone position on the wedges, he really liked it and we had to ask him a number of times if he wanted to roll over before he said, "Back." When on the wedge, and even when he was lying next to it, he worked at lifting his head and switching his upper torso from one side to the other. Also, in Physical therapy at 9:00 AM, he sat in a kitchen chair to eat his breakfast and brought his torso forward to eat.

September 25, 2005 8:50 PM--Betsy said Ross had a good day. One thing she mentioned is that Ross, at this point, probably isn't fully aware of all the deficits in his abilities, which is probably a good thing. Still, he continues to improve, talks a lot and continues to progress and remain active and involved in the goings on around him. The experts who treat him now are amazed by his progress, though at times it's frustratingly slow. He still says many familiar phrases: What's my name? I want to go home, I love you. Betsy asked today if her remembered home as Boston, and Ross said yes.

September 24, 2005 9:00 PM--I just talked to Betsy. Ross did really well today. She said they've been having trouble getting him interested in exercise at ten when Dominic, the physical therapist arrives. This morning, though, they decided to start Ross out on the mat, using the wedges to support him in various positions and it worked really well. Part of his exercises included getting Ross to use his left hand to hit the balloons. He always prefers his right, but today Betsy held his right arm, forcing him to use his left. He kept trying to use his right, in spite of Betsy's hold on him, so she got a large piece of foam rubber and held it over his arm so he not only couldn't use it, he couldn't see it, either. She said that after awhile he was using his left hand exclusively to hit the balloons, and doing really great. They also had him do a series of exercises where he worked his right arm above his head and to the outside, movements that used to be quite difficult for him. Today he was doing just fine.

Sorry to not get back sooner. On Friday, Ross did really well. We just bought a set of wedges to use on the floor to position Ross when he is on the floor for PT. We used them for the first time and were able to have him on his stomach, in a position that duplicates lying prone on a big ball but is much safer. He put his weight on his arms, and arched his back and lifted his head. This worked his abs, strengthened trunk control, and facilitated stretches that are to "do to him". We also put him in a reclining position on his back, both for eating some ice cream and also for reaching above him to hit balloons. We were really excited to see how well he did. As always, he worked harder when we brought out the timer. More later about Saturday.

September 22, 2005 8:55 PM--I called Betsy tonight since we hadn't talked in a couple days...she said Ross is doing really well. He had physical therapy today and is continuing to put weight on his feet during standing transfer practice. That's something he couldn't do at all just a short time ago. He seems to enjoy whapping the two balloons and telling them, "Go home, the two of you!' He's also been picking up things, using his thumb and fingers, which shows a huge improvement in small motor control. Betsy said she noticed at one point when he was just sitting and resting in his chair, his right hand was relaxed, the thumb and fingers open, rather than tightly clenched the way he has been in the past. He's definitely continuing to show amazing improvement. Thank you all so much for your support!

Ross continues to amaze us all. He is communicating and doing a lot of it by yelling--I think he loves hearing his own voice. Lat night he was talking about his ears. Clearly, we need to provide more time in our busy schedule to strengthen his ability to get the precise words that he needs out of the memory bank so he can use it in communication. Last night, as he was yelling, Lisa heard him from outside when she came to work, I was remembering that just a few months ago we were praying that he would master blowing and getting air over the vocal cords. Thanks to everyone for your support. I can't imagine doing this all on our own.

September 20, 2005 8:45 PM--Just a brief update tonight. I just talked to Betsy and the big news is that Ross actually sat in a kitchen chair and had dinner at the table, rather than in his wheelchair. He's doing really well with a spoon and fork now. When I asked Betsy if Ross seemed excited about doing something new, she said not really, but that each time he achieves a new skill, he wants to do more, and he really focuses on improving.

September 19, 2005 8:55 PM--Sorry I missed yesterday, but I just talked to Betsy and she said Ross was doing awesome. He's beginning to make "links" when he talks, speaking in sentences that are connected with "...and then," and using tenses correctly. One thing he's been saying is "I got lost." He also plays a game with a couple of balloons that Jeremiah ties to his wheelchair for Ross to hit. He talks to them and says things like, "Go home, both of you," as he hits them and blows them out of his way. Betsy said he's laughing when he's doing this, as if it's a terrific joke. Sometimes he yells when he talks as if he just enjoys the sound of his voice.

Big OT (occupational therapy) day for Ross as his OT Dominic emphasized the need to require him to do as much as he possibly can himself. So every meal is a challenge to use both of his hands and arms. Lots of waiting for us and being frustrated for Ross...but after awhile he breaks through and trys something new. Now he yells "Go Home" at us and we love it saying "but we are home"

Ross and Jeremiah are rocking! He put Ross through ALL of his physical and occupational therapy routines including the standing frame. Ross really likes the challenge, and then bellows for "more foooood!" Seems like any other crazy athlete. All of his caregivers and therapists are really jazzed. We are too,,,and also really pooped. Thank you so much.

Ross had another hard working day with Jeremiah today. In his being so much more present we see lots of old Ross attitude, ie being ready to go with what's happening OR nope, leave me alone, GO HOME. Our dog is making it her life purpose to get him to throw a stick or ball for her, and I think she's winning the power struggle. Ross' hands also seem to be loosening up some and his grasp ability is more definite.

Another "keep at it day" for Ross and the rest of us. His times of seeming out of it and confused are almost nonexistant now. He's always commenting on what's happening with sounds, gestures, words, sentences. More and more we're able to understand what he needs...which is a HUGE blessing. Today the big challenge was to try to throw the stick for our retriever Josey. This one is very hard as it means grasping, swinging his arm, and releasing the stick. He's just beginning on it and Josey is constantly putting the stick in his lap. I know they'll work it out somehow and then it'll be a perpetual motion machine of the finest kind.

This was a take it easy day for Ross. Sleeping in late, enjoying the breakfast his sister Ariel made for him, watching TV, and eating as much as we're willing to shovel in. He loves to fool around with saying "go home", switching between being serious and cracking up laughing. We are still constantly reassuring him that he is NOT going to die but thrive! Today he is bright and attentive.

I remember so well his calling me from Boston on a previous 11 Sept, early in the morning here waking me up to turn on the TV just in time to see the second plane strike. He had been talking to another bond trader on the phone who was in the Tower...that was how he found out it was happening. I don't think his associate survived. And Katie his fiance was supposed to fly out on that very same flight in the next day or so. When I ask him now if he remembers, he nods yes over and over. Now we're a lot of miles down the road.

Ross did not say as much today that was articulate. But he was saying things that I couldn't quite understand. I did hear, "I think I am in my parent's ..." He also said, "I am a man" and emphatically again, "I do not want to die." Rusty and I wonder if he remembers hearing people say that he would probably die or even worse. I remember reading the account of someone who recovered who said that the memory of hearing that she should die (because of how injured she was) made it hard when she "woke up" to accept that it was okay for her to live. We don't know what the context of Ross's statement, but I am so grateful that we can reassure him that he is strong and healthy and that he will live.

Ross has been more tired in the morning for the last week or ten days. Occupational therapy was initially hard for him this morning. In addition, he was probably sore because we had worked muscles the day before that he had not been using. It reminded me of being at a bike race, telling Ross, "You can do it." "Remember, if you are going to drive again, you need two hands to work." He is beginning to be able to pick up objects with us helping him to open up the right hand. We straighten out his thumb, which allows the fingers to relax, and then guide his hand into place over the object and he can then pick it up. He also is now moving his left arm and hand volitionally. This improvement has occurred in just the last three months. His right arm is a powerhouse and his hand /eye coordination with his new glasses is very good. He has to now learn to not use his whole body and right shoulder to do all the work, but disassociate the joints of the right arm.

He started work with a new PT who is good at breaking every action into steps, and we were able to get Ross on the mat for stretching, on his hands and knees, on the gym ball and afterward into his chair, without having to take risks with our own backs. She talked us through it and, more importantly, she talked Ross through the steps and he followed them. The smile on his face and the obvious sense of accomplishment afterward when we were congratulating him was wonderful to behold.

September 9, 2005 9:20 PM--They celebrated Ross's birthday today, and Ariel made peach cobbler with ice cream and stuck a candle on top for Ross. He immediately blew it out. It wasn't all that long ago they were hoping Ross would learn to blow air out as a precursor to speech...how far he has come in such a brief time! Betsy said Jeremiah brought two cartons of ice cream and a nice card, and Ross was really excited with his gifts. He also spent a lot of time looking at a photo of himself, his college friend Shannon and one other person. Betsy said he pointed to Shannon, something he's never done before with a photo. As Betsy said, "He's more and more with us. Tonight he watched a baseball game on TV." He's actually watching and paying attention now.

Dr. Kurn called and reported on Ross's bloodwork. Everything is perfect and his sodium levels are just fine, which is great news. He's doing better every day and proving so many people wrong. That's a really GOOD thing! Thank you so much for your prayers, your friendship and your amazing support.

September 8, 2005 10:00 PM--Just a brief note to say that Ross had a really good day today. Betsy said he was talking a lot. At one point he asked Jeremiah who he was and if Jeremiah was Ross's parent. About that time, Betsy walked in and Ross looked at her and said, "No, you're my parent." He's obviously working through a lot of things in his mind right now, but every step is such amazing progress. Thank you all so much for your healing thoughts, your prayers and your amazing support.

Ross's birthday was fun. I made him steak, potatoes, mushrooms and asparagus. We had some delays in our schedule, so he was eating dinner at 7:30 PM. He was yawning, but he still handled all of the chewing as well as ever. We are going to have his birthday cake on Friday, but he blew out a regular candle twice. He also blew a party horn and got the big noise. We were all elated.

Earlier, he sat in a kitchen chair without support for an hour and ate ice cream. In terms of talking, he didn't say anything new, but his speech revealed he was thinking about himself in relationship to others. He did ask Jeremiah and me to "Go home, the two of you." He also asked Rusty and me to leave him alone at one point. In the early evening, when we were talking a lot about his birthday, he was very pensive. He also spent a long time looking at a photograph of himself and Ariel that hangs on the wall in our living room.

September 6, 2005 9:20 PM--Ross was really tired today and wasn't ready to wake up, but he had a physical therapy appointment at nine so there wasn't much choice. Betsy said he did well, but was really sleepy. Toward the end of the session he said, "I want to go to sleep." Betsy said they took him back to bed, but of course then he couldn't sleep! He had an appointment later in the morning to have blood drawn so they could check his Tegritol levels, then another one later in the day with the chiropractic neurologist. He managed to do his PT--pedaled for awhile and worked on the mat, but Betsy said tomorrow she's going to just let him sleep as long as he wants. Sounds good to me!

September 5, 2005 9:00 PM--Today went well. Betsy said Ross is talking all the time now and often has a huge smile on his face. It's as if he's reached a point where he thoroughly enjoys talking and there has been a definite increase in speech since having the pressure on the shunt reduced. He's also much more alert and "outspoken." Today when Jeremiah was wheeling him to the back for his bath, Ross spotted a banana in a bowl in the kitchen. He put his foot out and braced against the stove so Jeremiah couldn't push him any farther, and let Jeremiah know he wanted the banana. He got it.

September 4, 2005 9:30 PM--Betsy said Ross did really well today despite a "petit mal" seizure this evening around eight. He's had some major speech breakthroughs, which Betsy wonders might be due to the reduction in pressure with the shunt. He is speaking more complex sentences and coming closer to actual conversations. Some of his comments today were repeats of things he's said before, but with more added. For instance: "I don't want to die. I want to live forever."

Ross loved beer before his accident, and that's one thing that hasn't changed, though he can't have very much at any time because of all his medications. However, tonight Rusty was trying to teach Ross to say "beer," and once he got it, Betsy said he kept saying, "I want beer, I love beer." Then he switched to, "I am six and I love beer. I am eight...I don't need beer. I am ten years old and I need beer!" Later on, he was saying, "I love wine and beer. Give me wine and beer." Betsy said they hadn't worked on the word "wine" at all.

Their priest came this morning for Eucharist and Ross crossed himself. He did this on his own. He spent a lot of time today smiling and laughing. He thanks people when they help him and seems to be thinking about what he is saying. At one point, he said, "This is my house and I like it." Betsy told him he could stay here as long as he wanted, but at some point she hoped he could go back to school or get a job. She said Ross looked at her and asked, "What am I supposed to do?"

Ross also said, "Give me a name." When Betsy told him his name, he repeated "Ross" twice, very clearly. He also said Betsy's name. He's doing so well right now that it's just amazing. Thank you all for your prayers and your continuing support. What Ross is accomlishing right now has not happened without your help.

Ross had a good day on Saturday in the afternoon. He was tired and tight in the morning and that affected his participation in his two hour OT session. He definitely has more use of his left arm and hand, but we have a long way to go. He is working on being able to open his hands, grasp an object and then release it. It seems like such a small thing because we do it all the time, but that fine motor control is still something Ross has to achieve in both hands.

September 2, 2005 9:30 PM--Betsy said today went really well and Ross was talking a lot. Many of the phrases are things he's said in the past: I have two arms, two legs, two feet and one heart; They call me mister; I don't want to be poor; I don't want to die, but he also said a lot of new things. When he was on the mat on his stomach, he said, "I want to turn over." When Ben pulled him to a sitting position on the mat, something that's been uncomfortable for Ross in the past, Ross said, "Continue pulling me up, keep doing that."

They've had the TV on watching the news about the hurricane. Tonight Jeremiah had filled the tub and came out to get Ross for his bath. Ross put his foot out to block the way and Betsy said it was obvious he didn't want to go as he was really intent on the news. He's more aware of things every day, more involved in what's going on around him, and continuing to surprise everyone with his new abilities. Betsy got him a "shapes" puzzle with little knobs on each piece and Ross was able to move the pieces around and put them in the right places.

September 1, 2005 9:40 PM--Betsy said the visit to the neurosurgeon was terrific. This is the same doctor who did the long brain surgery on Ross when he was in Marin. He had called after the latest CT scans and offered to reduce the pressure in Ross's shunt by ten degrees. Normal is between 60-160 mm and Ross was at 90, but dropping the pressure further can make the ventricles reduce more which can allow for more progress.

Betsy said the doctor was amazed with Ross's progress and made the comment that more people should have such supportive families. It is such a tough job to continue the various therapies day in and day out, but the benefits to Ross's recovery are so unbelievable that his continuing recovery is a definite reward. Ross definitely has memory problems, but he's so aware and alert that it's obvious his cognitive abilities are there.

Ross has started doing something new--he uses his right foot to lift and reposition his left foot on the wheelchair footrest. This is a fairly complex maneuver he's figured out on his own. He continues to improve, and much of the credit goes to all of you who have followed his recovery over the past three years. Thank you so much for your healing prayers and generous support.

First, the neuro optometrist was saw on Tuesday, Dr. Fong, was great. He gave him glasses that correct his double vision and prisms that raise his visual field. He gave us a number of exercises that are part of a visual rehabilitation program. He believes that Ross is cognitively there, something we have believed for a long time. Ross's difficulty is breaking through the motor impairments caused by the brain injury to express himself, not just to choose among alternative options that we offer. We are very excited and we see Ross already responding to the improved vision by putting together more sentences and increased motor control with a pen in his hand. It is coming at a good time, because his frustration has been increasing.

Yesterday, when Corinne, the PT came, we put Ross in a dining room chair without arms. I sat next to him on a low stool to make sure his right foot stayed in place on the floor. He sat there for almost an hour without any support except keeping his feet in place. He came forward to get spoonfuls of ice cream, then he would stay forward (away from the back of the chair) for two spoonfuls, and finally at the end of the hour he was sitting forward for at least five minutes and maybe longer. I had forgotten to bring the timer with me and since I couldn't leave him to get it, I was estimating the time.

August 28, 2005 9:20 PM--Ross has a really busy week coming up, so Betsy said she let him sleep late again today. He has his regular Monday appointments and then sees the neuro-optomitrist on Tuesday for an eye exam and on Thursday will see the neurosurgeon to have the pressure on his shunt reduced. Today Betsy said they were using a contraption that Dominic, the physical therapist fashioned for Ross. It's a long stick that has a brace for Ross's right arm and supports it enough to give Ross the feeling of moving his arm freely away from his body. (Picture a marionette with sticks controlling the limbs, sort of like what the puppeteers use on the Muppets) Ross is definitely using his left arm more. Betsy put his spoon in his left hand this morning when Ross was having breakfast and, while she had to guide him, he was still able to make the movements freely and easily. He still lacks the volitional movement for his left arm and hand, but he's improving. He doesn't see as well with his left eye, either, and Betsy is hoping the eye doctor will be able to come up with some sort of corrective lens to help Ross's vision.

Ross also talked a lot today. Some of the sentences he used (in proper context when talking with people) were: I love to laugh; I am a man; I feel good; I want to have food now; I am a man forever; I am telling everybody I am a man; I am hungry, food now. At one point, he said, "What am I...?" and then he yawned and covered up the rest of the sentence. I think it's been driving Betsy nuts to know what he intended to say!

August 27, 2005 9:45 PM--Just a brief update to let you know that Ross had a good day today. Betsy said they let him sleep late and he didn't wake up until 10:30. Unfortunately, one of the meds he needs to take must be taken on an empty stomach, so he couldn't eat as soon as he awakened. When he told his caretaker who was helping to dress him that he wanted food, Ross was told he would have to wait half an hour longer. His reply was, "What am I supposed to do?" His questions and answers are growing more complex by the day. Betsy said he's certainly more aware and alert and able to articulate better. Another thing Ross said today was, "I do love music." They've been playing his favorite CDs for him.

August 26, 2005 9:30 PM--Ross had another good day. When Betsy went in to see him this morning, Lisa (caretaker) was sort of dancing around the room and Ross was saying, "Stop that. Stop that now! Feed me!" Later he said, "I do love music," and said "sleep," and then fell asleep. When Betsy showed Ross the photo albums, he really focused on pictures, pointing and nodding at things he seemed to recognize.

August 25, 2005 8:40 PM--Betsy had all kinds of news for me tonight. The physical therapist couldn't come so she and Jeremiah got Ross on the exercise ball on the mat and he did really well. While lying over the ball he was able to bring his right knee forward and, with a little more effort, his left. They had him rolling back and forth on the ball, and also just hanging over it and balancing. Betsy said his balance and coordination are obviously improving by the day.