Updates to 12/26/04

Sonoma Valley Cyclocross at Infineon Raceway

was held

Saturday, November 27, 2004

Presented by Infineon Raceway Cycling--Napa Valley Velo

the benefit for the Ross Dillon Family Fund raised an amazing

$1000!

Thank you so much, Napa Valley Velo.

Thank you to everyone who has

so generously donated to the

Dillon Family Fund, now titled the

Go Home Foundation.

Rusty, Betsy, Ariel and Liz

have asked me to extend their

appreciation to each and every

one of you.

Gifts to the Dillon Family Fund, now called the

Go Home Foundation

are used by the Dillon family to help Ross.

Donations are now tax deductible.

He's also moving around more and is very alert and responsive. As an example, Betsy said she watched him at the table during Christmas dinner last night--he was eating prime rib, peas, salad, potatoes--feeding himself and chewing and swallowing without any problem. If you'll recall, it was just a year ago at Thanksgiving that Betsy had to forego giving him pumpkin pie because she didn't think he'd be able to handle food that solid.

I hope all of you had a wonderful--and safe--Christmas. I will probably not be updating again until the first of the year, due to family commitments. On a personal note, I want to thank the Dillon family for allowing me into their lives each time I call. Watching Ross's progress over the last two and a half years has been a most amazing experience and I consider it a privilege to have the opportunity to bring his wonderful story to so many people.

I thought I would send a note to go with Ross's picture. Ross helped me fill stockings and then we celebrated Christmas Eve with our own worship service. Ross was obviously touched by it. I also asked him if he wanted some of the fruit cake we always make and he nodded yes. He ate twice as much as I anticipated and he loved it. Again, he nodded yes to the cake and often shook his head about the tea which I kept offering him.

December 23, 2004 10:00 PM--Betsy said Ross seemed fairly tired and quiet today, but thanks to his new chair he can still be with the family when he's resting, something he can't comfortably do in his wheelchair. However, in spite of his slower start this morning, he had a terrific session in the standing frame. Steve, the physical therapist, brought some "chocolate decadence" for Ross. Betsy said they were giving Ross pieces of the rich dessert, followed by drinks of water to wash is down. After a bit, Ross was nodding "no" to the water and "yes" to the dessert. Even after he finished the last piece, he was looking around for more. It was obvious he really loved it.

December 22, 2004 9:15 PM--Ross really isn't an early morning person, but he was on the road to Stanford early this morning for a follow-up visit with the doctor who prescribed his Botox injections. The doctor noticed Ross was more alert and Ross was able to move his arm in all directions to show what he can do. The doctor put in a request for more Botox, and Betsy said they may also be able to get surgery scheduled for Ross's elbow.

Today Betsy was reading a Christmas letter from an old friend, someone who writes a lengthy, very funny note each year. She said Ross was laughing at the contents of the message, so it's obvious he's totally aware of what people are saying and what's going on around him.

December 20, 2004 9:00 PM--Ross had another restless night and was awake from 2:00 a.m until 7:00 this morning. He got some sleep during the day and was awake tonight when I called for the update. In spite of his sleepless nights, he's showing amazing improvement on a daily basis. Betsy said he's becoming more "outspoken" about his wants now. When Jeremiah, his caretaker, asked Ross if he wanted to work on the pedals, Ross shook his head no, but when Jeremiah suggested working on the mat, Ross nodded an emphatic "yes." He's eating really well--finished a huge enchilada for dinner tonight and Betsy said he might have eaten more if she'd offered it.

December 19, 2004 9:15 PM--I just talked to Betsy and she said Ross has been sleeping better at night until LAST night when he woke up at 3:00 a.m. When I called a little bit ago, he was still awake and had been ever since the middle of the night, but before we were off the phone he was sound asleep in his new chair. The chair has quickly become very popular!

One of Ross's therapists said he really needed a rocking chair as it would help with vestibular integration (The vestibular system is responsible for keeping your body upright and responding to the forces of gravity) so Betsy and Rusty went shopping for a rocker this weekend. Thanks to money from donations, they were able to buy a cushioned rocker that also reclines. When they first mentioned it to Ross, his response was negative, but once he got a chance to sit in it and rock, and also to nap while reclining, his attitude made a complete 180! Betsy said he can rock it himself and is really comfortable in the chair. The best thing is, it makes for a much more normal life for Ross.

A couple of other things to tell you: Betsy said she has been asking Ross questions and showing him pictures. She was surprised that he is totally unable to relate to himself as a little boy. When he sees the pictures of his sister, he has no problem "seeing" Ariel as a child as compared to Ariel as an adult, but he doesn't recognize himself.

On a more positive note, Ross has suffered from low-grade anemia for many months, in spite of a diet high in protein and red meats. However, on his most recent blood test, he is once more back to normal. The only change in his diet is the "sugars" Betsy is giving him as a supplement--they're monosaccharids, which are building blocks for the brain.

Ross's growth is absolutely fascinating as he progresses from stage to stage in his development. He's already reached points of growth his doctors never expected, and yet he continues to do even more and progress even faster. Thank you, all of you, for your prayers and healing thoughts as well as your monetary donations which allow his parents to continue with the therapy and materials that are making such a difference in Ross's life. He wouldn't be anywhere near this far along without your help.

December 14, 2004 10:00 PM--Ross had another sleepy day, though he woke up alert and ready to go this morning. Started out with physical therapy in the morning, including a session in the standing frame. The PT had him knocking colored cones off the tray according to color. Betsy said this time Ross waited for the therapist to line them up instead of trying to knock them over right away.

He also saw the doctor today for acupuncture. Betsy explained that Ross has been really congested and the doctor said he could be developing a food allergy. However, he did give Betsy an herbal tincture that might help ease Ross's congestion. Ross also had some blood tests done to check levels of medications in his system as well as sodium and mineral levels. Betsy said they're looking for a reason he's sleeping so much, though they realize it could be a sign of healing. Just as a baby might sleep for extended periods before a growth spurt, Ross's need to sleep might signal new neural connections or some other healing going on within his body. It's so hard to know until something actually happens! Anyway, after his doctor's visit, Ross slept all afternoon. He was awake when I called tonight, though, and trying to get Josie (the family dog) to pay attention.

I know it is family night and you are probably very tired-I certainly am and I am going to bed. Ross continues to be very tired and sleepy. He had a small petit mal seizure around 1 AM last night, but seemed to be alert afterward. He had fallen asleep at eleven, slept one-half hour, then awake off and on until four. He is still very congested, and has slept most of the day. We have an appointment with the neurologist tomorrow and I am going to suggest blood tests. I think that this is another one of those resting phases before the next big step forward, but it is worrisome. Will you be at home tomorrow night?

December 12, 2004 8:30 PM--I just got off the phone with Betsy. She said Ross wasn't sleeping well last week so she finally gave him some meds to help, and he responded well. Slept most of yesterday and a lot today, but when Betsy asked if he might be sick, Ross nodded yes, so it could be he's had some sort of bug that's been bothering him. He's definitely congested, but not running any fever.

On the good side, he's been terrific about responding to questions. He also ate a really good dininer tonight. This morning, when he woke up he was able to raise his left leg all the way to his chest. His left side definitely appears to be "waking up." When Rusty went in to see Ross this morning, Ross raised his left hand and touched Rusty's face with his finger.

However, on the down side, Betsy said he's had at least three petit mal seizures, so minor as to be barely discernible but obvious if you know what to look for. However, when Ross is focused, he's REALLY focused, and Betsy said he is beginning to seem more like his old self.

Friday she and Ariel went Christmas shopping and were gone most of the day. When they got home, Jeremiah had just bathed Ross and gotten him settled. Betsy went in to see him, and he wouldn't look at her. Betsy asked if he was upset with her, but he still wouldn't look. Finally she asked if he'd missed her while she was out with Ariel. He still wouldn't look but he did start to grin. Betsy said it reminded her of the way Ross used to tease her.

For those of you who are interested in the financial commitment of keeping Ross at home, please read the latest update letter. It's posted here. Thank you all so much for your healing thoughts and prayers as well as for your unwavering support of Ross and his loved ones.

December 8, 2004 9:30 PM--Just a brief update to let you know that Ross is doing well in spite of a lot of congestion. Betsy said he woke up laughing and smiled a lot when Christmas carols were playing. It was a good day with Ross's typically full schedule. The amount of work his therapists, caretaker and family do each and every day is amazing, but it's all part of helping him recover from his devastating injuries.It's been over two and a half years now since Ross was hurt, and he's probably worked harder in the past few months than he ever did before, even when he trained to race. It's paying off with each new skill and every small step forward, but he can't do it by himself. Please remember Ross and his loved ones in your thoughts and prayers.

December 7, 2004 8:40 PM--Today Ross had a pencil in his hand and Betsy was helping him to write his name. Later, on his own, he was "writing his name" just above the paper. He's still having trouble connecting pencil to paper on his own, but he obviously has the concept. Betsy said his eyes seem to bother him, though they're definitely tracking together now. However, she doesn't feel he would benefit from an eye exam at this point, at least not until he's able to make more definitive answers to the questions an optomitrist would ask.

Another thing Betsy mentioned is that she's noticed Ross doesn't like it at all when she talks about his time in the hospital. She was discussing his early treatment with the therapist today and said Ross was very angry about it...she could tell because he wouldn't look at her or answer her when she asked him if he was upset.

Rusty got on the phone and talked about Ross's work on the mat. He's able to really roll himself around now. When he's way over on his left side, he can flip himself quickly to his back. It happens so fast, Rusty said he actually looks surprised! However, it's also very clear he's enjoying the activity and the fact he's finally mastered another skill.

They've been putting him in the standing frame a lot and Ross is able to stand fully erect, then rock and rotate around without losing his balance. He's showing a lot of control, which was obvious at another time today when Betsy decided to help him sit up straighter. She said she usually can't move him because Ross is so big, but this time he moved easily with a bit of help from her. His trunk strength and control are definitely improving.

Rusty said they also put him in the walking sling again today. It's supported by the Hoyer lift and he's held by a web that allows a lot of movement. Ross stands as upright as he wants and is using his left leg, which used to be relatively useless, as his support leg. He braces himself with it, and today was busy kicking the soccer ball with his right foot. His left leg no longer turns in like it used to.

As Rusty said, it's amazing to see all the steps Ross is taking. His improvements are happening on a daily basis, with his mastering of new skills keeping his therapists busy thinking up new exercises for him. It's pretty amazing, so long "post-accident," to see him continue to improve at an even faster rate than before.

December 6, 2004 8:45 PM--Ross was tired today and Betsy said he seemed kind of sad, but that is to be expected as he improves and becomes more cognizant of his condition. However, both the chiropractor and speech therapist who saw him today were quite pleased with his progress.

Betsy said Ross's ability to eat and chew regular foods is improving. She fixed him braised lamb and sliced carrots and he had no trouble at all eating them. They're still using the chocolate sauce to get him to use his tongue. Betsy said they put it on his upper or lower lip and he licks it off, which seems like a simple enough chore, but up until a couple months ago, Ross was unable to extend his tongue beyond his teeth. Moving his tongue freely is an important part of speech, so each little step brings him closer to verbal communication.

Betsy said they also got him into a "walking sling" on Saturday, which consistes of a sling attached to the Hoyer lift they use to get him in and out of the bath. The sling supports him just enough to keep from falling but allows his feet to rest on the floor. Betsy said it's really difficult for him to balance himself, but he did beautifully. However, she also said she thinks that's why he was so tired today.

December 5, 2004 10:45 PM--When I called Betsy tonight she said a lot had been happening, and after talking with her I have to agree! For instance, Saturday morning when she was making Ross's breakfast, he paid attention to her instead of his dad, who was trying to work on some therapy with him. Rusty turned Ross's wheelchair around so he'd have to concentrate on the business at hand, not on what was coming up for breakfast. Ross used his foot to back the wheelchair up and turn it around so he could go back to watching what was really interesting!

On Thursday, Corinne, the physical therapist was working with Ross. She put the colored cones up on his standing frame tray and asked him to knock them off by specific color, which he did. He repeated the exercise later while in his chair. He's also been batting helium baloons around, using a cardboard tube (the kind that comes off of a coathanger). He used the tube to knock cones off as well.

Another episode in the standing frame occurred when he'd had an excellent session, standing very straight, leaning from side to side and catching his balance without assistance, but after fifty minutes he was getting tired. Betsy said Ross reached out and pushed the release lever forward which drops him back into his chair. Unfortunately, his chair wasn't in position so they had to stop the release until they could get his chair placed under him. After Ross was down and settled, they played soccer, moving a ball back and forth with their feet. Ross would kick sideways to Jeremiah and forward to Corinne, and Betsy said it was obvious he was thinking through the moves.

He continues working with many of the same skills he's developed over the past months, fine tuning them and growing stronger and more proficient. Speech still eludes Ross, but Betsy said it's just a matter of time. I can't wait to know what he has to say...and I imagine it will make his therapy even more efficient once he can speak and let his therapists know exactly what he needs.

Please continue to remember Ross and his loved ones in your thoughts and prayers. He's come so far, and though he still has far to go in this recovery, his baby steps are growing larger and longer every day. It's really exciting to talk to Betsy when I call for updates, because every time we speak there is something new to report. Thank you so much for your continuing support and healing thoughts.

December 1, 2004 10:15 PM--Just a quick update to let you know that Ross had a great day, including a visit to see his neurologist. Betsy said the doctor was amazed by Ross's improvement, and seemed surprised at how attentive he was. As they were leaving, Betsy said the doctor looked closely at Ross and said, "Ross, you are getting better."

Considering the fact none of Ross's doctors, in the beginning, held out much hope for him, it's pretty amazing to see how well he is doing, and it's truly gratifying to have the physicians noticing. It's been a lot of work and will continue to be hard work, but Ross is definitely getting better.

November 30, 2004 9:10 PM--I just talked to Betsy and she said Ross is doing really well tonight. He had just finished a session on the floor mat with his physical therapist and was really limber. Betsy said Jeremiah had worked with him on the mat a couple of times during the day, and it really showed in tonight's session with the therapist.

Betsy said they've discovered that Ross is almost always in pain from his elbow injury. The elbow was badly broken when he was originally injured and the subsequent calcification and bony growth has gotten worse. With Ross's increasing ability to communicate with nods and gestures, he has been able to let them know how painful it is. Betsy is hoping they can get him scheduled for corrective surgery to repair the damage and help alleviate the pain.

Ross surprised his folks with a new move tonight. After having his teeth brushed, he flashed a smile to show them off to his dad, then stuck out his tongue...both are movements he couldn't have done a few months ago. Then he puckered up his lower lip, as if making a face. Betsy remembers him doing the same thing when he was younger, but this is the first time he's been able to do it since he was hurt.

Just a small thing, but another step forward, and they all add up...just as the donations to the Ross Dillon Family Fund add up when folks work together. David Carr of Napa Valley Velo contacted Rusty today to let him know that the benefit cyclocross race at Infineon Raceway raised $1000 for the Fund, an absolutely awesome donation. Our heartfelt thanks to Napa Valley Velo and the Infineon Raceway Cycling Team.

Thanks too to all of you for your support, your healing prayers and your kindness. Ross's recovery is a long, slow process, but he continues to show improvement well beyond many of his physicians' expectation. Thank goodness his friends and family have always believed in him.

November 29, 2004 9:30 PM--A belated Happy Thanksgiving to all of you. I was away for the holiday and just back to catch up with Ross's mom for an update. There were twenty-five people at the Dillon table for Thanksgiving, and Betsy said Ross enjoyed every minute. He ate everything--last year at this time they were hoping he could tast pumpkin pie, but he wasn't able to do it. This year he ate turkey, dressing, potatoes, stuffing, yams, salad, pie and coffee. Betsy said he was eyeballing someone's wine so she gave him some non-alcoholic wine...with all the meds he's taking, alcohol might not be a good idea! Ross had a great time and the difference from last year to this is absolutely amazing.

Over the weekend they decorated their Christmas tree, and today Ross saw the chiropractic neurologist. The doctor asked Ross if he wanted the adjustment, which Ross usually doesn't like, he nodded yes. He also agreed he'd like the work done with the doctor's tools, not his hands, so he's showing a preference for the way he wants his treatments done. Betsy said he's very aware of all that goes on around him, which is definitely a good thing.

November 24, 2004 8:50 PM--Ross had a really good day and is doing well. Friends are beginning to arrive for a big Thankgiving celebration, so Ross is seeing a lot of folks he may or may not remember. Betsy said he's participating in conversations a lot more, nodding and shaking his head in answer to questions. He's also showing more facial expression. Betsy wanted me to remind you that Ross will be at the Infineon Race Track on Saturday for the Sonoma Valley Cyclocross.

November 23, 2004 8:45 PM--Betsy has been away all day and I just talked to Rusty for the update...it's been a "Jeremiah Day." Jeremiah is Ross's number one caregiver, and according to both Betsy and Rusty he is absolutely the best. He kept Ross busy all day long, beginning with his physical therapy with Corinne this morning, who donated her time as her Thanksgiving gift to Ross. She and Jeremiah, with a lot of help from Ross, got Ross into the standing frame for a really good session. Later on Ross had PT with Steve, who had him on the mat working out. In between and all around PT, Jeremiah kept him busy all day long, and Rusty said Ross was working hard at knocking cones off his table and really paying close attention to Jeremiah when Rusty got home from work this evening.

Thank you so much for your continuing support of Ross and his loved ones. To put his recovery in perspective, go to the updates from this time last year. There was excitement because he raised his arm and grabbed a lift, though Betsy was disappointed he wasn't able to have pumpkin pie for Thanksgiving dinner. Ross is now able to scoop his own food up with a spoon and eat it. Doctors said if he didn't show progress in the first six months, he'd never improve, yet his skills continue to develop at an accelerated rate. This past few months have been absolutely amazing. Thank you so much for your prayers, your healing thoughts and your wonderful, encouraging notes to Ross.

November 22, 2004 9:50 PM--Betsy said Ross is doing really well. His speech therapist was absolutely delighted with his progress. Betsy said she took a burrito with them to the appointment today so the therapist could see how well he is able to eat. The doctor had made apple crisp to share with her staff and patients, and Betsy gave some to Ross. She said he loved it and was very quick to respond when she asked if he wanted more.

He also saw his chiropractor for a visit. The doctor said Ross's eyes were "teaming" better than they have before. He was doing the "adjustments" which Ross doesn't particularly care for. At one point, Betsy said Ross glared at the doctor and said, "Stop, now." There was no sound, but it was more than obvious what he was saying!

He's able to move his mouth and tongue now without any problem. Can stick his tongue out beyond his lips on command, something that he needs to be able to do to "remaster" speech. Betsy said he also is able to do a "toothy" smile when she asks him to show his teeth, and there's no longer any hesitation when he's given a command. His improvement really is amazing.

November 21, 2004 10:15 PM--Talked to Betsy earlier this evening and she said Ross has been really sleepy lately, probably due to new meds he's been taking. Still, he's doing great in physical therapy, moving from his stomach to his side without prompting. He's drinking almost all of his fluids by mouth. When I asked Betsy about whether or not they might remove his stomach tube, she said they would probably wait until after his elbow surgery...though it's not a certain thing, she said it looks like it will have to happen for him to have more mobility.

Ross is showing so much improvement, not only in the standing frame, but on the mat, as well. Thank you, everyone, for your continuing support and healing prayers. He's already surpassed his doctors' expectations and there are no limits as to how well he will do. Thank you.

November 17, 2004 8:00 PM--Ross is still sleepy...in fact, when I called at 7:30 he had been asleep for about three hours, but Betsy said that was following an acupuncture session in which he was very alert and seemed interested in the procedure. She said she feels there are huge cognitive changes going on right now. Ross is understanding everything that's said to him, he's responding well, he's eating real food and chewing and swallowing without trouble. It's as if the small changes and signs of growth are all beginning to come together. Please keep Ross in your thoughts and prayers, and thank you so much for your tireless support.

November 16, 2004 10:00 PM--Ross was really sleepy today, in spite of a trip to the doctor in Santa Rosa. Betsy said that around 5:30 he was actually sitting up and pedaling on his trainer and was sound asleep! It's electric-assisted and his feet were going around, but Ross was out for the count. He also seems very sad, and Betsy said it's obvious he's thinking about what is different in his life and what he's lost. However, his neurologist said today that Ross is definitely "neurolinguistically aware." He understands everything he hears.

8. He is biting and chewing. He continues to enjoy rice cakes with soft cheese, peanut butter or butter. He is also chewing his food. He has been eating meat loaf, green beans (cut into pieces about an inch long), salad. For breakfast last week he ate a breakfast burrito and ate the whole thing.We just cut it and gave it to him.

14. He is still asleep now. He slept from 11 till 1 AM, and was then awake until 7 AM. I woke him at 1 PM for medicine. We will let him sleep a little longer and then start the day. It is good to be able to let him rest today, we are so busy. I also see this sleeping-in as a more normal event.

Personally, I think it's beyond awesome! Ross is doing so well, but it's because of the dedication of his family and friends and a wonderful team of therapists--and it's also because of all of you, the amazing people who continue to keep Ross in your thoughts and prayers, who support Ross and his amazing team both emotionally and financially. I hate to think where he'd be now if he'd been left in the care facility where there was minimal therapy and attention given. Ross is living proof that love and care will help the severely brain injured heal.

November 9, 2004 9:15 PM--I've been away but talked to Betsy tonight. She said she's just awed by Ross's ability to communicate. He's definitely improving, answering yes and no with head movements, pointing to "yes" and "no" cards and even reaching out and touching the cards. He's been really tired the past few days, but she thinks that's because he's been so congested.

They've been trying a new product that is supposed to help "cell communication." Betsy said she's done a lot of research on it (and no, I didn't think of getting the name of it and I'm sorry!) and said if it doesn't work, it won't hurt Ross, but if it does work, it could make a tremendous difference in his recovery. The product consists of polysaccharids (sugars) that supposedly cause stem cells to migrate to where there are damaged cells.

He had physical therapy twice today, this morning and later on this evening. I asked if Ross knew his therapists, and Betsy said he definitely recognizes them. He's doing well in the standing frame. The last few times he hadn't been standing up all that straight, but today after a great session on the mat he stood up really straight in the frame and didn't use the support in front at all.

Betsy said they've gotten him a drum pad but haven't done much with it. She really wants to sit down and work out a more consistent program for his cognitive work, but their days are so full it's difficult to find the time. "Two days," she said, laughing. "I need two days to concentrate!"

When I talk to Betsy and hear their schedule of therapy and doctor's appointments, I can understand her frustration. There just aren't enough hours in the day. I asked if Ross is trying to speak and she said yes, that he's making very loud noises not associated with coughing or clearing his throat, as if he's trying to recall the process it takes to form words and make sound. He does mouth words that are fairly clear to understand, and even raised his hand in greeting to a visitor today.

He's come so far. Ross still has so far to go, that it's easy to forget just how much he has gained. A year ago, much of what we take for granted now was just a dream. He's feeding himself and eating foods that require chewing, something he wasn't even close to not that long ago.

November 3, 2004 9:30 PM--Ross did really well on his trip to Stanford. It's a long day for him, especially with the heavy traffic, but Betsy said it was a good visit. The doctor examined him and said he thinks Ross's triceps muscles are strong enough to support his elbow--his biceps was causing his arm to draw in until the botox released the tension, but the doctor was worried that his triceps wasn't strong enough to eventually give him full movement. However, he thinks it is and will recommend surgery to repair Ross's damaged elbow to give him more mobility. His elbow was seriously injured in the accident, something that's never been thoroughly addressed.

Betsy said today was really good. Ross continues to nod "yes" and "no" to questions. He was also very solemn and sad for awhile, and when Betsy asked him if he was remembering, he nodded his head yes. That's got to be so tough for all of them--as Ross remembers his life before this nightmare he can't help but feel terribly sad over what he's lost.

I hope, at some point, he'll also realize all he's gained. It still truly amazes me that so many people continue to pray for Ross, donate to his fund, read this website and keep him in their thoughts as he goes through the difficult job of healing from such serious injuries. Many of you knew Ross before, but just as many have only known him since he was injured, and yet you remain among his strongest supporters. Thank you so much for being there for Ross and his loved ones.

November 2, 2004 9:45 PM--Just a brief update tonight. Talked to Betsy and she was laughing about something that happened today. Rusty had called and asked something about Ross, so Betsy went to Ross and said, "Daddy called and he said..." and Ross shook his head vigorously, as if he didn't want to hear. Almost an hour later, Betsy brought the subject up again. "Daddy called and..." Once again, Ross shook his head. He didn't want to hear. Not good for Rusty, but obviously Ross's short term memory isn't as bad as they've thought!

Tomorrow is a follow up trip to Stanford for a check on the Botox, but today was pretty darned good. Ross had an excellent session in the standing frame. At first he wasn't responding to questions, but he did react well to the Yes and No cards, even putting his hand on the proper one for his answers.

Ross had a good day. He started the day being sleepy, but after the 20 minute trip in the car, and a wait for the chiropractor, he had a good session. Then another drive of 40 minutes to speech where he demonstrated all the gains he has made this week in chewing. The therapist had never seen him eat a rice cake. She put some of the cranberry relish we had on the rice cake for him to eat, and when she asked him if he wanted more, he nodded yes. He responded to questions several times. In fact this was the first time he had consistently communicated with her with head movements. When she said goodbye to him, he mouthed "bye." She said she thought his progress from last week was phenomenal. Understandably, he was really tired after this. Eating and all of the wonderful tongue movements are still exhausting for him at this point, especially when it lasts almost an hour.

October 31, 2004 9:11 PM--Betsy said Ross had a great weekend and today was especially nice. He's slept through the night the last couple of nights and then remained awake during the day. He's much more agile while feeding himself, is chewing well and able to use his tongue a lot better in moving food around. That may seem like a fairly simple thing, but for over a year and a half Ross was unable to move his tongue at all. Now he can lick his lips. Think of all the things your tongue does when you're eating and talking.There are so many different movements that require a lot of control--slowly, but surely, Ross is regaining all those abilities.

He's also responding well to questions with a shake or nod of his head. Betsy said that when they're not quite sure of his answer, they're using large YES and NO cards. Ross either nods toward the one he wants, or sometimes even touches it. He appears to be trying to vocalize, and sometimes seems so close to speech. It can't be far off.

October 27, 2004 10:00 PM--Other than a frustrating doctor's appointment (an hour and a half wait and a doctor who wasn't really sure why they were in his office...) it was a pretty good day. Unfortunately, there are doctor's appointments away from home every day this week, so please hold the good thought for Betsy and Ross, that things go smoothly and well.

Betsy said they made a trip to Whole Foods Grocery and after testing the rice in the deli, ordered some for Ross. Betsy got a salad for herself and they sat outside and ate. Ross is doing so well now with foods. It's really amazing to see how far he's come in such a short time.

He'll be going back to Stanford for more followup on what the Botox is doing. It's loosening his biceps and now it's down to whether or not the triceps is strong enough to move his arm in and out. Ross is doing so amazingly well...thank you for your support, your prayers and healing thoughts.

October 26, 2004 8:40 PM--Received another update from Betsy--I really love it when she's able to find time to write to me, as it's so much better to get her direct perspective. The schedule they keep, day after day, is so exhausting that it's a real treat when she can actually take the time away from working with Ross to sit down and write a note.

We got his lab work done, and every thing seems okay. What a change to get the results within four hours. After getting blood drawn, we went to a taco shop for lunch. Ross had a burrito, and he did a masterful job of chewing and drinking his soy latte. He then ate part of my steak taco.

We all rested after we came home, and then at five Ross had physical therapy. The session was okay, but Ross was definitely not feeling well. After it was over, I tried playing ball with him and it took a while to get him to respond. I finally asked him if he was thinking about how things have changed. He nodded yes. I then talked to him about how it is sad and not fair, but we can't let it stop us. This is the hardest part for me. My heart aches for him and that he has lost so much. Please pray for Ross as he goes through this period of increased awareness. That he is aware of all this is a good sign, but it is so hard.

At some point, Ross will be fully aware of all he has lost and all the horrible things his body has been through, but at the same time, at some point I think he's going to look at the letters in his guestbook, at the reports on this website and the amazing cadre of supporters who have been there since his accident, and he will see how far he has come. He has made such amazing gains since his accident, and so much of the credit goes to the wonderful support of all of you who have stuck by him throughout his long recovery. Thank you so much.

Again, the days have been a blur of activity. Ross actually only had one appointment away from home last week. This week, he has five appointments away from home and four in home therapy appointments. This is in addition to daily sessions on the mat, the pedals, standing frame, etc. Work with a pencil and cognitive work.

His sessions in the standing frame have been good and he is continuing to communicate with head movements. He mouthed yes to a question again yesterday. Rusty and Ross have been working with the yes/no cards and their equivalent head movements. When shown the cards, he has given us the correct head movements the last three days. This is now a daily activity.

It is clear that Ross is becoming bored with some of the things he has mastered, but which have little game value. Yesterday, and this is big news, I gave him a flat container of lentils, a large serving spoon and a small bowl. Ross spent 45 minutes scooping up the lentils, then dumping them in the small bowl. It was awesome to watch his problem solving and determination. I am sure he was exhausted and that may account for some of his fatigue today.

October 20, 2004 9:45 PM--Betsy said Ross seemed very tired today for some reason. However, when he was awake and watching funny stuff on TV, he laughed. He also woke up laughing and smiling. In general, he's doing really well. Cognitively, he may be doing far better than anyone is aware because he's still unable to communicate. I think that's got to be the biggest frustration for his folks, but he seems so close to talking. Thank you so much for your continuing support, for your healing thoughts and prayers. You are such a powerful part of his recovery and we really can't thank you enough.

October 19, 2004 9:00 PM--Just a quick note to say that Ross had a good day, though I'm lacking a lot of details because Betsy got called away early this morning when Ariel had an accident on the way to work. She's fine, but that's after rolling the car in the rain...I imagine Betsy's the one who's more shook up than Ariel. Kids are NOT supposed to do this to their parents!

I asked if he had any residual effects from the seizure, but Betsy said, other than being really sleepy yesterday, he was doing great. Ross is very bright, very aware, and definitely responding to what's going on around him. He's really congested, but hopefully with the storm blowing in tonight the air will clear and he'll feel much better. Thank you so much for your continuing support, your prayers, and your wonderful notes to Ross's guestbook.

October 17, 2004 9:15 PM--Ross had a really huge seizure last night. Rusty said it could have been two or possibly one that seemed to settle, then took off again, but it was about eight minutes in duration. Ross's folks finally gave him some medication that helped calm the seizing, but it was still a pretty frightening, exhausting period. The one positive note that everyone hangs on to is the fact that so often the seizures come before great advances, as if new synapses are making contacts and new neurons are fireing...it's so hard to know for sure.

Betsy said he's much more communicative. She had a catalog with clothes in it and went over them with Ross. He nodded vigorously when she pointed to things she thought he'd like. Betsy also talked about Thanksgiving and all the foods that Ross liked, especially things they'd hoped he would be able to eat last year, but still wasn't ready for. She said he was really attentive, and responded to her descriptions of the different things on the menu. They had a really good evening, but she seemed to sense the seizure coming on, so she and Rusty were ready for it when it finally happened.

Still, Ross had his best standing frame session ever yesterday. He's shifting his weight, standing really straight and tall, and appears much more comfortable. Betsy said he's working with a new therapist now, but Steve appears to be really good with Ross and they're very happy with the work he's done.

Betsy said they're working on his hand and wrist, trying to get Ross to hold the proper position and not curl his fingers as he's been doing. Please, if you're saying prayers for Ross, pray for function on all levels, but on his right hand, particularly. Your prayers have a lot of power, so this isn't something we ask lightly. To all of you, thank you so much for your continuing support of Ross and his loved ones.

October 13, 2004 8:30 PM--Just talked to Betsy and Rusty...it was a busy day and Ross WAS NOT interested in getting up this morning, but once they got him out of bed he did well...of course it took him until lunch time to really hit his stride, but I've had days like that so I really sympathize! He's really congested from all the smoke in the air from the Rumsey fire over in Yolo and Napa counties, so Betsy was sure that had a lot to do with his lack of interest in things at first, but then she gave him a popsicle, which appears to be the new munchie of choice. She said after he had his popsicle, he was more alert, more active and definitely more responsive.

Betsy had to run some errands this afternoon so Ross was with his caretaker, but this evening he had a great session in the standing frame and was doing really well. She's ordered a special pen for him that has a large grip designed to fit his hand. They're hoping he can get better control of it and possibly that will lead to writing and better communication.

In the meantime, Ross's cost of care is once more an issue. His COBRA insurance ran out at the beginning of the month and Betsy said she got a real shock when she picked up his regular medications from the pharmacy--the bill was over $600. Medi-cal will help, but coverage is far from complete. He'll move into Medi-care after December, but once again, coverage is minimal. At this point, all the therapy that is helping Ross so much is covered by donations...his caregivers are extra and their costs are totally out of pocket, as well as some of the doctors that the Dillons take Ross to see.

Their appreciation to those of you who continue to help offset the huge expenses for Ross's care is beyond measure. Thank you so much for all your help. Ross continues to improve, far beyond the doctors' expectations, and it's due to the wonderful care of his family and dedicated caregivers and therapists, as well as to your healing thoughts and prayers. Thank you so much for your support.

October 12, 2004 9:15 PM--Today went really well. Ross had physical therapy in the morning. Instead of using the standing frame, Jeremy (PT) tried something different. He's been reading about "patterning," and decided to put Ross on the floor mat with pillows under his middle. Then he worked on moving his left leg and arm, as well as helping him turn his head to the left. They repeated the process with the right side. Betsy said the ideas behind the therapy are still controversial, but they're willing to try and see if it helps Ross.

After dinner tonight, Betsy gave him a popsicle. She said Ross wanted to bite big pieces off of it, but she made him wait until it had softened a bit so he wouldn't choke. She said Ross was really animated, licking it and sort of studying it, looking seriously at it and trying to talk. The cold is supposed to stimulate nervous response and she said it really appeared to be doing just that. At one point, Rusty carried his dinner over by Ross and sat down to eat. He offered him a sip of his wine, and Betsy said when Ross nodded yes, that he'd like some, it was a truly natural, normal movement.

Thank you so much for your continuing support and healing prayers for Ross and his loved ones. He still shows improvement, long past the period where doctors expected him to continue to heal. It's pretty exciting for all of us to see how far he has come, and how well he continues to move forward. You are all a very important part of this process--please don't ever underestimate the power of your caring.

October 11, 2004 9:20 PM--Ross had a really good weekend--Betsy said he's more communicative with vigorous nods and shakes of his head in response to questions...where he used to make a single movement to answer, he now nods several times or shakes his head vigorously. He's showing more progress in movement with his left side and continues knocking the cones off his tray with his right. He had a really great session in the standing frame and is holding himself very straight and erect. Betsy said he's also using his tongue more when he's eating--licking his lips, moving the food around in his mouth, even using his tongue to dislodge food trapped between his teeth. It wasn't all that many months ago he couldn't even move his tongue beyond his teeth.

Betsy mentioned a really interesting book she's reading, the Better Brain Book by David Perlmutter M.D. I've provided a link to the book at Amazon.com if you'd like to take a look. Betsy said it's not just for brain injuries--the book also contains a lot of interesting nutritional information as well.

Ross had a slight "not a seizure" tonight...he was on the mat working when he began blinking and showing signs of seizure, but after five minutes of seizure-like activity, he just sighed and was perfectly fine. It doesn't appear to be a typical seizure and leaves no noticeable after-effect.

October 6, 2004 8:30 PM--Ross had a pretty good day today. Betsy told me he no longer takes his meds through his feeding tube, but instead takes them by mouth with a glass of water or juice. Hopefully, they'll be able to remove the tube before too long, but for now it's a good way to make sure he gets enough fluid in his diet.

Betsy said he's really nodding "yes" and "no" regularly in response to questions. He's also been sitting and listening to music, and has started moving his head to the music. He's looking really good, very alert and healthy. His mom really sounded upbeat when I talked to her tonight.

October 5, 2004 9:20 PM--I just talked to Betsy and she said Ross is doing well. He's on a new anti-spasticity drug that tends to sedate him a bit, so he's usually more sleepy than normal in the mornings and again late in the evening when he takes it. He saw the osteopath today and got the results of hair and urine sample tests. They show adrenal fatigue and low thyroid, which means he's essentially spending a lot of time in a "fight or flight" mode, ie: anxiety. Possibly it's from increased awareness of his condition. Betsy said she did talk to him today about his injury and the fact he's slowly getting better, and she mentioned things in his past, people he'd known, and she said he started to cry, which tells her he's very aware of the meaning behind her conversation.

Slowly but surely, Ross is getting better. Betsy and I talked tonight about the things he'll remember from this time in his life, if he'll recall stuff folks have said within his hearing. Thank you so much for yout thoughts and healing prayers for Ross and his loved ones.

October 4, 2004 8:20 PM--I talked to Ariel a little bit ago and she said Ross was busy pedaling away and exercising, but she hadn't been there all day so couldn't really give me much of an update. Betsy emailed one to me last night, which I'll print here for you:

Thursday: We had a successful trip to Stanford. I feel blessed to be in the Stanford system and I particularly like Ross's doctor. The doctor prescribed a new medication to help reduce the spastic contracture in Ross's right hand. The Botox has helped, but they can't Botox all the muscles. Ross started taking the new anti-spastic medication last night. It makes him sleep for a couple of hours, and reduces his blood pressure for a couple of hours, but tonight, almost 12 hours after taking it, he is alert, less toney and doing great.

The big news is that Ross is showing us more and more that he understands what has happened and he is able to make connections between his disability and other people's injuries. We were watching a program on shark attacks, and in it a little boy had been attacked by a shark. Ross became very sad, and when I asked him if it made him think about what had happened to him, he nodded yes. I proceeded to talk to him, and between his nods (yes) and a shake (no), we talked about how hard it is now, and how much things have

Also, Ross ate barbecued meat that had been cooked until it fell apart, and he chewed it well. He also had his first pop sickle today. Really cold things hurt his teeth, but he learned how to reach part way with his tongue to touch it, and he also sucked on it. At dinner tonight, he has been using his tongue to move the food more effectively, and to collect pieces from inside and at the corners of his mouth. It seems that the work with the pop sickle helped.

September 29, 2004 9:20 PM--Ross had another really busy day, with physical therapy in the morning, followed by occupational therapy and then time on the mat with Lisa helping him. The physical therapist hadn't seen Ross for a month and was really amazed by his progress, especially by how alert and aware he is. Betsy said they made an important discovery about the standing frame today--the tray was adjusted incorrectly and actually made it more difficult for Ross to stand up straight in the frame. As Betsy said, sort of a "du-oh" moment! They've got it set up properly now and will find out next time he uses it if there's an improvement.

September 28, 2004 9:10 PM--Betsy said Ross did pretty well, considering it was a really busy day and he was terribly congested today. Started the day out early with physical therapy and was fitted for two dyna-splints: one for his left foot and the other for his right arm. After that they got him on the mat on his hands and knees. Betsy said the process was pretty labor-intensive and required pillows to support him, but the object is to replicate developmental steps. After lunch they took him to the osteopath for a treatment, then a stop at Whole Foods for groceries--they didn't get home until late. Betsy said that when she got to the store she asked Ross if he wanted anything, and he nodded yes. When she asked if he wanted coffee he nodded yes again. He definitely knows what he wants!

Tonight she said he was watching TV when I called but appeared to be thinking of something else. He does that often when he's had a really full day, and today was definitely busy. Thursday he goes back to Stanford for a follow up on the Botox. Also, Betsy said they're going to talk to a machinist to see if he can modify the Hoyer lift to make it taller so that they can use a walking sling with it. It seems as if there is always something they need to do to adapt equipment and make it more serviceable for Ross.

September 27, 2004 10:30 PM--Ross had a really busy day today, starting out with a trip to the doctor for blood tests to try and find out the source of his low-grade anemia. After that he saw the chiropractic neurologist who worked his left arm a lot and told Betsy they needed to do the same at home, as the exercise helps to stimulate receptors in his brain which helps them heal. Ross is using his left hand more and after Betsy moved the toggle switch closer, was turning the radio on and off at will. Ross also let his mom brush his back teeth, something he's been fighting. It wasn't all that long ago he couldn't even open his mouth on demand. He continues to be more involved in what's going on around him and is more alert and aware.

September 26, 2004 9:30 PM--Called Betsy tonight to catch up after being away since Wednesday and it sounds as if Ross is doing really well. She said the Botox is working to a certain extent, though there are still some muscles keeping tension that were not affected by the shot. However, Ross is using his hand more and showing more mobility.

Betsy spent the day home alone with Ross as Rusty and Ariel were working at the volunteer firemen's booth at a festival in Sonoma. She said they've installed a new toggle switch that allows Ross to turn the radio off and on and also a light. More things can be added to it, but they've started with just the two and Ross has done really well. Betsy said he grasped the concept immediately. He was using his right hand, but at one point when Betsy was adjusting the splint, he used his left. Moved it in very small increments, but the progress is obvious.

September 22, 2004 8:50 PM--Ross did really well today. He had an appointment with a dermatologist who removed a couple of questionable moles, one from his back and one from his arm. Betsy said he didn't complain a bit and was really cooperative. Later in the day he took a nap then had a great session on the mat. Betsy said he's really alert and it's more noticeable every day.

They noticed today he spent a lot of time just sitting and looking to the left. Turning that way is supposed to indicate the return of memory, and Betsy said he did that a lot today. He's reaching out for things with his right hand, and in many ways, following the process taught in child development classes as he relearns so many of the basics of existing.

September 21, 2004 8:50 PM--Ross had a really good day today. He got the new splint for his elbow and when his therapist measured his extension, he was at 110 degrees. Normal is 180, but the fact that Ross is able to extend this far after all the injury and the contraction is wonderful. If he can work it out to 180 degrees with the splint, it will mean he won't need surgery to free up the joint in his elbow. His physical therapist thinks there is actually less boney protrusion on his elbow, which means some of the calcium may be breaking down.

Betsy said that when they were in the car today, she looked back at Ross and noticed his left hand had slipped off the tray of his wheelchair and dropped down by his side. She asked him to put it back on the tray, which he did. It was only then that she realized it wasn't his left, it was his right he'd dropped down, and that arm is usually tightly constricted and resting on his tray. She said when she told him to move it, he lifted it back to the tray. They were on their way to see the neurologist, who hasn't seen Ross for a month. He was really impressed with his progress.

Jeremy, Ross's physical therapist, said Ross's continuing recovery exemplifies what he was taught in school, that if you create the perfect environment with supportive care, a loving family, and proper therapy, the patient will improve. Ross is proof that this works.

September 20, 2004 10:30 PM--Just a brief note to let you know that Ross had a good day with visits to his chiropractic neurologist and the speech therapies. Tomorrow he'll see the physical therapist, the occupational therapist and his neurologist, and on Thursday he's going in to have a mole on his back biopsied. Life right now sounds like nothing but a series of doctors' appointments, but it's so much more than that. Ross is doing well cognitively and is very alert. Betsy said it's getting much easier helping him in and out of the car for trips to appointments.

September 19, 2004 9:00 PM--I called Betsy tonight to see how Ross's Botox shots went on Friday. It was a long day--they left the house at 7:45 in the morning and didn't get home until 3:00, but Betsy said Ross did really well. He had seven injections beginning at his biceps muscle to down near his wrist. They use a hollow needle that is inserted and moved around a bit to find exactly the right spot for the Botox, so it's a pretty painful procedure, and she said he was still sore today, but he did great at the hospital and tolerated the shots really well. They already see a difference in his mobility. His right wrist is definitely more relaxed. She said they'll be splinting him more often and using massage on his arm and hand.

Betsy said that while they were waiting for their appointment, Rusty waited outside with Ross and talked to him about the shots and the things they might eventually make it possible for him to do--drive his wheelchair, even at some point, the van. Ross was definitely interested in the possibilities.

Overall, he's chewing better and swallowing fluids with more control, not as congested as he's been, and he's very alert to what is going on around him, as well as better able to communicate--though he's still not speaking. Please remember Ross and his loved ones in your thoughts and prayers. You are all very much a part of the successes he finds each day.

September 14, 2004 8:45 PM--Ross's morning went well, though he was really congested today. Even his nebulizer wasn't helping. He had a good session in the standing frame, though it was obvious his congestion interfered with his concentration. He had an appointment with the osteopath this afternoon but seemed really tired afterwards. They'd just gotten him home and in bed for a nap when Ross had a petit mal seizure. Betsy said he remained conscious and alert throughout, but he definitely looked much better when it was over.

As Betsy said, at least this time she had a witness when he spoke! Even the doctor had tears in his eyes, and Betsy said Ross has been very alert all day. His speech pathologist was impressed with what he's doing now, and said it was highly unusual for a person with Ross's extensive injuries to continue to show such amazing progress. When he was in her office for his appointment, he ate a turkey roll-up that Betsy had fixed for him. She said when food got caught behind his teeth he was able to clear it out with his tongue...when only a couple months ago he couldn't even move his tongue beyond his lips.

He's kicking cones placed on the floor now, as well as pushing them off a table set far enough away that he has to reach, something that is difficult with his bad elbow. However, he appears to relish each new challenge and his competitive spirit is very much still there.

To all of you who continue to pray for Ross's complete recovery and who hold good thoughts for him throughout the day, a very big thank you. It may be a long, slow process, but it's all in a positive direction. He's truly doing amazing things, and it couldn't happen without your support.

September 12, 2004 9:20 PM--Ross has had a really good weekend. His sister Liz and her husband Warren were here for a visit. Warren set up obstacles for Ross to knock over in a more complicated pattern than he's been doing, and he did great. Betsy said that when they were stacking the cones for him to knock down, Ross mouthed, "I can do it," very clearly. He's still not able to produce sound, but the comments he shapes with his mouth are in full sentences. When he finally figures out the sound, he's going to do great!

When I called tonight, he was eating his dinner. Betsy said they'd watched a really smaltzy movie about weddings, a story where a man's three daughters got married, and Ross seemed sad. She wonders just how much he remembers about his own plans and said he was obviously upset after the film. Betsy said she told him about his accident and why so much had changed, but at this point it's hard to know how much he recalls...another reason we're all anxious for him to finally regain his ability to speak.

Ross continues to show improvement, to the point where he is amazing his doctors and constantly surprising his parents and his caretakers. It's been a long haul, but he still has far to go. Thank you all so much for your continuing support, and also for you thoughtful notes, both as e-mails to the family and notes in Ross's guestbook. Your kindness is a huge part of Ross's recovery.

September 8, 2004 9:30 PM--Ross did really well today, including an excellent visit with Dr. Adams, his chiropractic neurologist. Betsy said he's been really working hard, especially when on the floor mat where he is able to move around with a freedom he doesn't have in the standing frame. The doctor suggested Ross spend even more time doing floor exercises as they stimulate so much of his brain.

Betsy said that, as great as the standing frame is for Ross's therapy, it's not easy to use it as often as they want because it takes three people to get him into it. He still needs to have someone hold his foot in place as it wants to twist inward, and two to work with his upper body. We talked tonight about the possibility of using a brace, but Betsy said Ross is so close to having control over his foot that they figure it won't be much longer before they can get him into the frame with just two of them to help.

One interesting thing is that the homeopathic neurologist said Ross was allergic to fish. Betsy has been giving him supplemental fish oil tablets twice a day for quite some time, but she stopped them yesterday and said there was a noticeable improvement in Ross's responses today. She said he really seems to be trying to talk and she feels he's very close. He's definitely more alert.

On a side note: you've probably noticed I'm not updating every night, but it's because I've been out of town a lot and haven't had access to my computer. There will almost always be an update on Sunday, Monday and Tuesday nights, but the others will occur only if I'm in town. Hopefully, things will settle down before long and I'll be more consistent with my reports.

September 7, 2004 10:00 PM--Ross is 28 today. Now, since I've known him since he was about fifteen, I feel there's been a serious mistake made, as he can't possibly be that old, but he is and I am and guess we'll just have to deal with it. Time passes so fast it's scary. Thank you, those of you who sent messages to Ross's guestbook. Betsy said it was so neat to read them tonight when she finally got a chance to go online.

Ross had a really good day. A family friend came by with her four year old and a large card made by her eight year old. Also brought a birthday cake, and Ross ate three slices. Betsy said it's the first time he's had anything of that texture, she cut the slices thin and he managed to chew and swallow just fine.

Betsy spent time with the homeopathic neurologist today. Ross didn't go, but his mom was able to get a lot of interesting information that will hopefully make Ross more comfortable. Betsy is constantly working with Ross's diet to find the optimum foods for his recovery, though it's obvious he's in excellent health, other than his obvious injuries.

September 6, 2004 9:15 PM--I'm just back after a number of days away and received an emailed update from Betsy after talking to her tonight. Tomorrow is Ross's 28th birthday. It's been well over two years since he was injured, and his recovery continues at a slow but steady pace. He's doing so much more than doctors thought he would ever manage, and though he still has along way to go, it's pretty amazing to see how far he has come. It would be a wonderful gift to Ross and his loved ones if you would say a special prayer for him tomorrow. Here's the update I received from his mom:

Ross has done some new things in the last few days. At 1 AM a few nights ago, Jeremiah saw Ross wiggling his left foot the way he does his right foot. This is the first time that we have seen this and means that his left foot and leg are starting the process of achieving more function. This is needed for standing, shifting, and eventually walking. Also, when Ross was waking up and stretching yesterday, he stretched his left arm up toward the ceiling.

He is doing much better drinking water from a glass. His chewing is good, but he appears to forget that he is chewing and then chokes a little. I notice that he really does do better when he is standing and then afterward. For example, after he has been standing, licking his lips, chewing, drinking unthickened liquids, and knocking the plastic cones off the table all go much better. Standing helps the brain to organize and work better. Therefore, it is really important that we reach the point where only two of us are required to get him standing. When we can do that, we will get him up at least three times a day. That will continue to give him practice with trunk control, weight shifting and correction -- all things that he needs for unsupported sitting, for starting to stand unassisted and then to walk.

August 31, 2004 9:00 PM--Things are going well today and Ross had a very busy and good day. Started out with physical therapy in the morning, including time in the standing frame, then a visit whit the cranial osteopath. Also talked to a rep from a company that makes an adjustable boot that should help with Ross in the standing frame. Ross was really relaxes after his visit from the cranial osteopath, who was really impressed with Ross's physical abilities.

August 30, 2004 10:20 PM--It was a really busy day for Ross today. Betsy said they saw the chiropractic neurologist first, and he was absolutely ecstatic about Ross's progress with knocking the cones off his tray with his right hand. What really surprised him, though, was when Ross was able to knock the cones off with his left hand. The doctor tried some special glasses on Ross that have a camera inside. It allows him to get film of Ross's eyes during specific movements and motions, which will tell him what part of Ross's brain is working during those times. Once he knows what is and isn't working, he can form a better course of therapy directed specifically to Ross's needs.

Ross also saw the speech therapist today, who recommended an allergist to help figure out what foods Ross should avoid to control his congestion. However, Ross was able to show how well he is now able to chew his food and swallow. Betsy said he's doing well with rolled up pieces of turkey (so long as there is mustard on it!) which he is able to chew and swallow without difficulty.

His physical therapy appointments have been very good. Getting him into the standing frame is easier and easier. The difficult part is getting his left foot in the proper position so that it is weight bearing. This prevents injury to his ankle and foot, but it also sends the right neurological transmission through the body's wonderful central nervous system up into his brain. I look forward to the two of us being able to get him standing (right now, one person keeps the foot and ankle in position while the other two help him lean forward and bring his arms up on the tray). Of course, Ross is learning how to do this as we do it each time. We want to be able to get him up three times a day for eating, watching television, and playing games. We feed him in the standing frame now, and as he moves to reach the food (we are moving the spoon all the time) he gets practice in weight shifting, trunk control, and position correction. These are things we learned as babies, and Ross is having to relearn it, but this time he has to control more height and weight as he learns. Usually Ross leans on the tray of his standing frame with both arms. On Thursday night, we helped him stand back a little without resting on his arms and he knocked the cones off the tray of the standing frame with his right arm. This was a first.

When he knocks the cones off his tray, he knocks them off faster than we can replace them. When we put a cone on his left side, he crosses midline with his right arm so that he can knock it off with his right arm. But on Friday, he knocked a cone off with his left hand twice. He was using the tiniest movement, but that is how function returns.

On Friday, we took Ross to get an EEG. It was necessary for him to keep his eyes and head still, a hard thing for him to do. There were periods, however, when he was very still. I think the stillness was volitional, and that when he started to move again it was because he forgot that he was trying to be still.

The speech therapist continues to be pleased with Ross's progress: opening his mouth wider, his tongue coming further out to lick chocolate off his lips, and he is chewing better. I am giving him pieces of thinly sliced meat for chewing practice. He is making sounds and moving his lips, as if to speak. I am praying that he speaks on his birthday, September 7.

We took him to St John's Petaluma today for church. This is the church where Ross grew up; he was an acolyte and it was the center of our social life. When we first arrived, his arm twitched a lot and he seemed overwhelmed. But when our friends came to speak to him at end of the service, he seemed to recognize some of them. I thought that he enjoyed the service. I also noticed him looking intently at one of the stained glass windows.

Bryan, one of our caregivers just set up the Atari game and Ross has his hand on the controller and Bryan has his hand over Ross's to guide him. This is the first time in awhile we have tried it, and his hand is much looser as is his arm. In fact, he has been lifting his arm up and to the side a lot. His ability to move his right arm this much has been developing over the last month and it is exciting. I almost forgot that Bryan was holding his hand up this afternoon and Ross was lifting his hand to bump Bryan's hand. Also, when Bryan pushed against Ross's hand, Ross pushed back.

I just called and talked to Betsy and she said Ross ate a slice of turkey tonight--she put some mustard on it and rolled it up in a cylinder and he was able to eat it. While we were talking, he was feeding himself. She said that, all in all, he's had a really great day.

August 22, 2004 9:30 PM--Betsy said Ross is increasingly more alert, he's moving his right arm more and with more control. They put a bunch of plastic cones on his wheelchair tray and Ross can knock them off as quickly as they can put them up. He's consistently having good sessions in the standing frame, and working hard at his exercises. He's chewing much better and Betsy said she made him some fresh salad using tomatoes and peppers out of the garden, chopped really fine, and he was able to eat all of it without a problem. He's responding well to yes and no questions and, as Betsy said, showing such consistent improvement that it's really exciting to watch.

August 18, 2004 9:00 PM--Ross had an appointment with the orthopedist this morning. The doctor said surgery on his elbow should be covered by Medi-Cal and suggested that the Dillons wait until Ross has had the Botox shot before moving ahead with the surgery. There is a slight possibility that the Botox will loosen his biceps up enough that he won't need the operation to free his elbow, so everything has been put off for a couple months. Ross is scheduled for the Botox shot on September 17.

Part of Ross's exam today was to check for muscle strength in his right arm. It's very good, according to the doctor, which is a necessity if he's going to go ahead with the operation. Overall, Ross had a really good day today and was very alert and aware while in the doctor's office.

August 17, 2004 9:45 PM--Betsy said Ross's day today was even better than yesterday. He continues to improve, though the congestion did appear to slow him down some this morning, especially when he had his session on the standing frame. However, he had an appointment with his neurologist who is going to check into alternative anti-seizure medications for Ross, hopefully to find something that won't be as sedating. Betsy said they're still not sure what causes the seizures, though the doctor said Ross's are not as bad as many patients with similar injuries have to deal with .

After his appointment, while Betsy was dealing with the paperwork, Rusty got Ross out to the van and was lowering the ramp from inside. Ross was paying close attention, and Rusty made some comment about the advances in technology. Ross nodded in agreement, so he was definitely paying attention.

Tomorrow morning at 8:30 he's got an appointment with the orthopedist about surgery on his elbow. It was badly dislocated during his original accident and never put in a cast, so every time Ross was taken in for X-rays, the technicians dislocated it again. Hopefully, arthoscopic surgery will be able to correct the problems he's got now from the constant re-injuring of the joint.

August 16, 2004 9:30 PM--Once again, a seizure appears to instigate more healing and advances for Ross. Though he did have two choking episodes today, which he managed to get through on his own, Ross also showed a lot more coordination and physical ability than he has in the past. Betsy said that at one point he was slumped over in his chair and she asked him if he could right himself. He was able to straighten up and move into a more comfortable position on his own. Betsy said he's definitely getting more control as well as strength in his muscles, and his improved coordination was evident when Betsy got a ball out and Ross was able to kick it back to her on consecutive returns for about fifteen minutes. She said he's chewing and swallowing better, and seems really close to talking. He even mouthed, "Hi, Mama," to her, though he still hasn't mastered sound. It's coming. He's getting stronger and healing more all the time. Thank you, everyone, for your prayers, your healing thoughts and your support for Ross throughout this long recovery.

August 15, 2004 9:50 PM--Ross had a four minute seizure last night and a much shorter one this morning. His doctor had reduced his Tegratol last week, so whether or not that is the cause is debatable. He doesn't seem to have any lasting effects, however, and had a good day today. Betsy said he has had a few moments where his expression told her he was trying to figure stuff out, as if he had a greater understanding of what was going on around him, but still didn't entirely understand.

August 12, 2004 9:30 PM--Just talked to Betsy and she is so frustrated! Ross was scheduled to go into Stanford tomorrow for the Botox injections to help his tight muscles but the distributor really screwed up. They refused to deliver the medication to the pharmacy in Sonoma any sooner than one hour before the injection was to take place, but the problem is, the hospital at Stanford where the doctor is going to do the injection is a two and a half hour drive away. What's even worse, Botox has a 90 day shelf life...it's not like a couple of hours is going to make a difference. Betsy said the pharmacist did all he could to try and get the medication in a timely fashion but to no avail. Hopefully, by the time Ross's appointment next month comes around, they'll have discovered someone who actually thinks who can get the medication to the pharmacy in time.