Herrick 2003 Updates
I received this note tonight (2/16/03) from both Ross's family and Katie (his fiancée) and her family. It is posted with their permission:
Since Ross was hurt, the second or third question we are asked by those who hear Ross's story is: "What is going to happen to the driver?" We have not had a good answer to that question, indeed we still do not. But recently we spoke with an assistant District Attorney for Sonoma County who explained the law as it applies to Ross's case.
Had Ross not survived his injuries, the District Attorney could have prosecuted the driver for manslaughter since she drove off the road for no apparent reason and struck him in a marked bike lane. However, the law will not permit, and the District Attorney will not prosecute, any criminal offense for grave bodily injury under the same facts. Because Ross survived, the only other charge with which to prosecute the driver is reckless driving with bodily injury.
The position of the District Attorney's office is that failing to see a bicyclist, driving off the road, and plowing into someone is not reckless.The California Legislature would have to modify the Penal Code sections defining recklessness in order to support criminal prosecution in a case like Ross's.
To us, this means that the law offers no protection from inattentive, incompetent divers - not for bicyclists obeying the rules of the road, not for children walking to school, not for anyone else in the path of an
oncoming vehicle.
Obviously, this is unacceptable.
If you are as outraged as we are that the kind of catastophic injuries Ross has suffered goes unpunished in our legal system, we would encourage you to take action. Write the Sonoma Country District Attorney. Write your representative in the California Legislature. Write your local newspaper or email your discussion group. We have absolutely nothing to lose.
The Meyers and Dillon families.
Ross was moved to Herrick Hospital 2001 Dwight Way, Berkeley, CA 94704 on October 10, 2002.
Ross Dillon
PO Box 1509
Glen Ellen, CA 95442
Thank you to everyone who has so generously donated to the Dillon Family Fund. 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 are used by the Dillon family to help Ross.
Please note: The following information comes from family and friends, not the physicians or therapists. It is based on my understanding of what I'm told. I apologize if I have misinterpreted any of the facts given to me, and will try to keep everything as factual as possible
Insurance news--correction! The insurance company which at first denied Ross any further benefits has finally agreed to coverage while he is hospitalized. Ross has an unlimited monetary cap on his insurance, but it is not a guaranteed lifetime coverage. In fact, he will probably only be covered for, at most, nineteen more months under this policy.That does not include outpatient care after he is released, but it does mean he can be moved to a rehab facility (most likely, back to Kentfield) where he will be able to get intensive daily physical therapy. The money in the Dillon Fund will most likely go for the lengthy out-patient rehabilitation Ross is going to require. Thank you again for your prayers and your donations. The agreement for coverage is nothing short of a miracle.
March 23, 2003 7:30 PM--We're back and I just got off the phone with Betsy. She said the day went well. At one point, the nurses put Ross on his back, just before Betsy and Rusty left for lunch. When they returned a bit later, he had twisted his upper body to one side and was covered with perspiration from the effort. This is something new, for him to move his position in such a drastic manner.
Yesterday, the nurse discovered that his trach was blocked and probably had been for a number of days, which would explain his agitation and--to that point--unexplainable discomfort. After prolonged use of a trach, tissue can actually grow over the opening at the bottom end of the tube and block it, essentially cutting off the air supply. This means Ross has most likely been breathing w/o the trach since at least Friday and probably before. It had been reported as blocked on Friday, but the message didn't make it to anyone who could do anything about it until Saturday.
The move to Kentfield is scheduled for tomorrow at 10:30 AM. As soon as I hear anything, I will post it to the new page, which you can access here: Kentfield.
Please keep Ross and his loved ones in your thoughts and prayers, especially tomorrow when he makes the move back to rehab.
March 21, 2003 7:20 PM--Today Ross went to another concert given for the patients at the hospital, and once again he became quite agitated. Betsy said they're not certain, but they think he might be upset by seeing so many severely injured people around him. The musicians had actually practiced some of Ross's favorite music, but it didn't seem to matter to him. He didn't settle down until he was back in his room. As he grows more aware, he is quite possibly making the connection between himself and the other patients in the hospital.
Betsy also said they're trying to keep Ross awake more during the day so that he sleeps better at night.
The big news today is that Betsy and Rusty found the perfect wheelchair ramp to use at their house. It's seven feet long and folds up when not in use. She said it's exactly what they have been looking for. They were able to pay for it out of money from the Dillon Hope Fund. Thank you to everyone who has donated or who continues to donate money towards the fund. It was set up to take care of expenses exactly like this.
Thank you, too, for your thoughts and prayers and your patience as you hang in there with Ross throughout this long recovery. The next update to the site won't be until Sunday evening. Until then, take care.
March 20, 2003 7:40 PM--Betsy said today went really well. She and Rusty were both at the hospital by 7:30 this morning. They got Ross up on the side of the bed and he did great. She said he lifted his head without help, was tracking--definitely following them with his eyes--and stayed awake and alert for quite awhile. The acupuncturist came by and was also impressed with how well he did. During the session, Ross moved his arms and legs, though movement of his left leg stil lags behind his right, and also moved his head.
Betsy said she's learned that he is not sleeping much at night, so they are trying to keep him awake more during the day. Once he's at Kentfield, with the full regime of physical therapy, he'll have to remain awake and alert for long periods throughout the day.
Please keep Ross in your thoughts and prayers as he gets ready for the move to the rehab hospital on Monday.
March 19, 2003 7:40 PM--Ross will be moving to Kentfield at 10:30 Monday morning. I'll start a new page on Monday, so if you've bookmarked this one, be sure and switch to the new page. I'll have a link at the top.
Betsy said he had a great day today. The speech therapists were there and Ross actually handed the hacky sack to one of the therapists when she asked him to. That's a first. He also tried to throw it on command. Betsy said he essentially just dropped it, but it was definitely in response to a command.
Both the therapists said this was the most alert they've ever seen Ross and they were impressed with how well he's doing.
Ross also had the Passy-Muir test to check his breathing without the trach, and he did very well. Betsy is hoping they'll be able to remove the trach once he gets to Kentfield. It seems to bother him more lately. The therapist told Betsy that could be because, as his awarness grows, he is more aware of the trach and its constant irritation.
Please keep him in your thoughts and prayers throughout this week. On a personal note, I would like to ask you to please hold the good thought for our men and women of the armed forces who have gone into harm's way tonight.
March 18, 2003 7:35 PM--Just talked to Betsy and she said Ross had a really good day. One example of his increasing abilities: she took him out to the patio for some fresh air and he appeared distressed. It was windy, but she wasn't certain what upset him. However, Betsy said he was able to convey, with yes and no head movements and eye blinks, that he wanted to go back inside. She also said that when she was helping him on with his sweatshirt he intentionally bent his left elbow a couple of times to facilitate the process.
He slept for about three hours and awoke when the Threshold Choir was there to sing for him. Betsy said he was very alert and aware of their presence. One of the singers had a copy of the photo that ran in the Marin Independent Journal with an article about the Threshold Choir. The photo includes Ross, and Betsy said he was definitely interested in looking at it.
Things are stilll set for a move to Kentfield this week. Betsy also said they're still trying to find a portable wheelchair ramp for use at home. If anyone knows where they might be able to rent one, please contact Betsy at [email protected]
Your prayers and good wishes are much appreciated. Thank you so much.
March 17, 2003 8:00 PM--Got an emailed update from Betsy:
Ross had a good day. He had speech therapy in the morning where he had the Passy-Muir valve on his trach tube. He did very well; his oxygen saturation rate stayed at 96 and above. He is getting much better at answering yes questions with his head. We still need to work more on no responses with his head. He made some sounds, but has made many more sounds tonight.
I set up the laptop so Ross could see his web site. I read yesterday's update, we looked at the pictures and I read him some of the Guest Book messages. I think he understood that it was about him.
He is asleep now at seven, but he wakes up and looks around before going back to sleep.
March 16, 2003 7:45 PM--Today went well. Betsy said she's decided they must be getting used to Ross's new level of alertness, but they are definitely seeing more awareness in him every day. She used the eyepatch on his right eye today--usually it's over his left when she puts it on him--and he seemed to be more comfortable and possibly able to see better. The patch is to correct possible double vision, and definitely makes a difference in how Ross reacts to images around him.
Betsy said they went to church, and when they came back they had friends with them to visit. Other visitors stopped throughout the day, so there was a lot of activity.
When Betsy gave Ross a neck massage, he lifted his head to help. He also worked with the hacky sack about a dozen times, following instructions to tip it off his head. Betsy said he needs physical therapy in the worst way, but even though it's been promised, it has not been forthcoming. Aside from being fitted for his loaner wheelchair, he's not getting any at all and is not scheduled for any PT for the next week. He's supposed to receive therapy three times a week. It's been very frustrating.
Please keep Ross in your thoughts and prayers, that the move to the rehab center happen as soon as possible.
March 15, 2003 7:50 PM--Betsy just called me to say today went well. Ross was sleeping when she arrived this morning, but Katie was there with him. Her professor's son came by to visit. Matt had a serious brain injury about eight years ago but has since recovered. He spent about three hours visiting with Ross. Friends Jesse and Sara stopped by as well. Ross was sitting up in a wheelchair during their visit. Betsy had put his eye patch on him, which helps correct what the doctor believes is double vision. Besy said Ross was very focused on his friends, quite alert and obviously aware who they were.
Betsy said they also did their usual range of motion exercises with Ross, so it was a very full day.
Thank you again for your prayers for Ross. Please keep him in your thoughts this week as the bureaucratic wheels slowly grind away to get him moved to Kentfield.
March 14, 2003 7:30 PM--Ross continues his pattern of sleeping deeply and then being very alert and active when awake. He finally got his "loner" wheelchair from Herrick today. It holds him upright and he was able to hold his head up on his own. He was in it for over two hours.
Rusty said that today, when he was tapping on Ross's left hand, Ross appeared to be looking at it. As Betsy explained, there has been sort of a disconnect between Ross and his various body parts. He recently began watching his feet when the acupuncturist would insert his needles, but he doesn't turn his head to the left very much. He usually just turns his eyes, though he will turn his head to look to the right to identify sound. Watching his left hand in response to touch is new.
Another noticeable improvement is in the movements of his face. Betsy said when he grimaces in response to a difficult task, in the past only the right side of his mouth would twist. Now the left side of his mouth works more in conjunction with the right. The improvements are slow but steady, and always more noticeable to people who haven't visited Ross for a few days or weeks. Betsy said it's wonderful, though, to see such steady improvement and to know that he continues to achieve new things almost every day.
On another note, it is looking better and better for a move to Kentfield by late next week. I will post here as soon as we know for certain. Please keep Ross, Katie and their families in your thoughts and prayers.
March 13, 2003 7:45 PM--Betsy just told me the insurance company has approved two weeks' care at Kentfield Rehabilitation Center for Ross. That's how they do it--in two week increments, and in order to stay, Ross will have to continue to show improvement. However, Betsy said before he can move to Kentfield, they need to get their home ready for him, with doors wide enough for a wheelchair, bathrooms set up for one and a ramp to get inside. Even though Ross isn't ready to go home yet, the house needs to be prepared in advance before he can be moved to Rehab, so that the folks at the rehab center know he has a safe place to go home to once they have done as much as they can for him.
He didn't have acupuncture today as the doctor was ill with a cold. Betsy said Ross slept most of the day, at least until Katie arrived. Then he was wide awake and alert.
As Betsy said today, the end plan is to bring Ross home as soon as he is ready and able. Even if they have to bring in therapists to treat him there, it will be so much better once they can have him home and out of the hospital and rehab. With your prayers, hopefully that day is not so far away.
March 12, 2003 7:50 PM--Just talked to Betsy. Not too much to report tonight. Ross was tired a lot of the day but when I called he was alert and awake. He did well in his tests today when they covered the trach and had him breathing through his mouth and nose. He's been coughing a lot, so the doctor changed his antibiotics.
Tomorrow he'll get acupuncture. Betsy said he always appears to do better in the days directly following the acupuncture sessions.
Thank you again for keeping Ross, his fiancée and his family in your thoughts and prayers.
March 12, 2003--I wanted to make sure it was all right to post his name and website, and now that I have permission I can publicly thank Kevin Weilbacher http://www.kwsupport.com/csb/ for his generous advice and assistance in helping me to get Ross's website back on line. After moving to the new webhost, their technician and I spent countless hours over many days trying unsuccessfully to get the site to load. In pure frustration I went searching for advice on the web, and found Mr. Weilbacher in a chatroom for users of the same program I have, one which is no longer being manufactured. He was able to determine how we could get Ross's website loaded, though it was midnight before I finally was able to upload the site. Considering the fact he is in Florida and I'm in California, I know he spent the better part of the night working on this. I am absolutely overwhelmed by the fact a total stranger on the far side of the continent would be so willing to help solve a problem that was, for me, proving to be insurmountable. Like I told him, I know just enough to get myself into trouble, but not enough to get out. Thanks to Kevin and his amazing knowledge, Ross's site is up and working like a charm.
March 11, 2003 7:40 PM--I just talked to Betsy and she said Ross appeared tired today after all the activity yesterday. When I called, he was sitting up in a chair while she and Katie were finishing up a take out dinner--Betsy said Ross looked as if he'd much rather be asleep. He had speech therapy today, but he was coughing a lot, possibly a result of the antibiotics.
Not much else to report. No word from Kentfield yet, and they probably won't hear until next week. In the meantime, please keep Ross in your thoughts and prayers as we move through this tenth month of recovery.
March 10, 2003--I can't believe the site is actually up and working! An absolutely wonderful man I found in a chatroom for the program I use which is no longer produced (longevity is not expected in cyberspace!) helped me reconfigure some things and that's all it took. Thank you, too, for your patience. I am sorry it's taken so long.
Betsy said Ross had a great day. He was alert, lifting his head, looking around and lifting his left hand. When his friend Cody stopped in and commented on the shirt he was wearing, Ross looked immediately at the design on the shirt, then at Cody's face. Cody tries to come by once a week at least, and Betsy said he noticed improvements in a lot of Ross's actions that those who are there daily don't really notice.
The nurse from Kentfield stopped in and Betsy was really pleased with the visit. Things are moving along well. Thank you again for your patience and your prayers.
March 9, 2003--Site is still down. Talked to Betsy and she has been offered a place to stay near Herrick, which saves them a lot of driving. Hopefully, it won't be needed for long, as they are hoping to get Ross moved back to Kentfield where he will receive more physical therapy. The nurse from Kentfield is coming Monday for an evaluation.
Betsy said Ross had a good day. Ariel, Betsy, Rusty, Katie and her mom and some other friends were all there decorating his room for Easter. Betsy said there was a lot of laughing and talking, and Ross was taking in all the activity.
Things are moving along quickly now and we are all hoping to get Ross into serious physical therapy. Please remember him in your thoughts and prayers.
March 8, 2003--The website is still down but I know I'll be able to post this at some point! Betsy said Ross was tired today, but following two really active days, that's to be expected. He had a good acupuncture session, but the big concern is a growing number of pressure sores he's developed. As Betsy said, it's a good thing he's on antibiotics! He's got a couple on his feet and one on his finger. The ones on his feet are probably from the special "booties" they keep on him to keep his tendons stretched to a normal length. The one on his finger appears to be an ingrown nail. They're keeping the booties off him for now and watching the finger, as well as giving him antibiotics.
Please keep Ross and Katie in your thoughts and prayers.
March 7, 2003 7:45 PM--I just talked to Betsy. Ross had a great day today. Sat up on the side of the bed, was very alert and looking around. She said a violinist was at the hospital playing, going from room to room, and Ross was very interested and observant while he was there. He was really into the "hacky sac" today, wanting to do it as much as anyone was willing to "play." He tips it off his head on command, and Betsy said he did that over and over.
Rusty had him up and sitting on the side of the bed as well as in a chair for a couple of hours. Also sat him with is feet on the floor rather than reclining. His vitals are good, but he does have some spots that are a bit concerning: a pressure sore on one foot and an infection, possibly from an ingrown nail, on one finger. He's starting antibiotics for those.
Katie made the observation today that his face appears more even. Most of his head injuries were to his left side and that has affected the movement of his facial muscles. Katie noticed today that he appears to be more "even" now, with both sides of his face equal.
I'm still struggling with the website--having a problem with compatibility between my web building program and the host that was totally unexpected. I hope to be online soon. Please remember Ross, Katie and their families in your thoughts and prayers.
March 6, 2003 7:30 PM--Betsy said today went really well. Ross was able to respond with head movements correctly for yes and now answers to questions. For yes he lifts his head off the bed and tips his chin down, for no he turns his head to the right. Betsy said they practiced it before she went through the questions, and he got at least five or six of them right. They sound so simple, but for someone with the severe injuries Ross has suffered, he's doing amazingly well.
I asked Betsy what some of the questions were. She said they looked for things they could ask that were not ambiguous or confusing in any way. For example, two of the "Yes" questions are: Are your eyes blue? and Do you love Katie? Two of the "No" questions are: Is it dark outside? and Are you a girl? The questions have to be really clear and concise.
The acupuncturist was in and said this was Ross's best session yet. He was very alert, moving his head, following the doctor, tracking with his eyes as he moved about the room. He was obviously trying very hard. Betsy said that Ross's injuries were mostly on the left side of his head. he couldn't look past midline. Now he can move his eyes all the way to the side and sometimes he turns his head.
Doctors told Betsy in the beginning that whatever recovery Ross showed in the first year was probably all they could expect to see from him. However, she got a wonderful letter from a woman in Lake Tahoe who had seen Betsy and Katie on TV and wrote to tell them that her son had suffered a severe brain injury about four years ago. The woman runs a preschool, and she said her son's improvement over the past four years follows the development of the children. At first he was blind, but now he sees. In the beginning he was unable to speak, but now he talks constantly. He continues to improve, four years after his accident.
Betsy said they had a patient conference today and everyone was very optimistic about Ross's progress, and very optimistic. Betsy said that when Ross recovers she hopes to hold a national symposium for brain injured patients. She said it's important to show that people can and do recover from such severe injuries.
Hopefully you will be able to read this report before long. My domains are being transferred and I should be able to get the website up by the weekend. I apologize for the terribly long downtime.
Thank your for your patience, for your prayers for Ross and your healing thoughts. You give so much by caring.
March 5, 2003 7:30 PM--Just talked to Betsy and she said Ross had a really good day. He was awake and alert most of the day and did his best ever with the "sensory regulation" program. They worked on two different head movements for Yes and No and Betsy said she felt as if he had a good understanding of what they were trying to do. He did really well with tracking and his vitals were nice and low. e slept from about two to four today, and was very relaxed. She said when the nurses arrived a little after four to give him his bath, he didn't want to be awakened, and was quite vocal about it. It sounded as if he repeated the word, "No."
Thank you for keeping Ross in your thoughts and prayers.
March 4, 2003 7:30 PM--I've signed up with a new webhost, so hopefully we will be back online before too long. I just talked to Betsy and she said Ross was awake a lot more today, especially when they went up to the patio garden, where he was very alert. He did get upset at one point, but the therapist said--and Betsy agrees--that it's most likely because he's becoming more aware of the situation and the extent of his injuries.
The Threshold Choir came to sing to him. Betsy said he slept through much of it, but she expects when he is finally healthy he will remember the songs. They always save some familiar songs for the end of the time they're there, especially Down in the Valley, which Betsy used to sing to Ross when he was little, and which she sings to him now in the hospital. She said she enjoys joining the choir to sing that one.
Please keep Ross in your thoughts and prayers. Again, I do apologize for the site being down for so long. We're doing our best to get it back online as soon as possible.
March 3, 2003 7:45 PM--Just had a brief conversation with Betsy. Ross slept again much of the day, but she said he is definitely showing more mobility and everything about him is more relaxed. One thing she'd noticed is the fact his tongue was resting comfortably behind his bottom teeth. Much of the time since the accident it has been forward. He's lost a couple of pounds from his high near 157, and weighs around 155 now, but he's been doing a lot more therapy and activities, which could account for the weight loss.
I have found a new webhost and will hopefully have the site back in working order before long. Thanks to Marie Salerno for her suggestion. Hopefully, the move will be as smooth as we can make it.
Thank you all for your prayers and your healing thoughts for Ross. As he improves each day, all of us are reminded how much we depend on you.
March 3, 2003 1:30 PM--Betsy just called with some really good news--the physical therapist was in this morning and told Katie that Ross had shown so much improvement they were recommending him for physical therapy three times a week. Speech therapy will also be started, though Betsy doesn't know the schedule for it yet. The last time he was evaluated was a month ago, and no therapy was recommended at that time, though his family and friends have continued with daily therapy for him on their own. I'll have more later this evening, and hopefully will finally be able to post this. My website has been down for five days now.
March 2, 2003 8:50 PM--My website is still down, but I just talked to Betsy and will continue my updates, to be posted as soon as I am able. Ross slept a lot today, again, but Betsy said it's a very restful sleep and she's hoping it's in preparation for the evaluation by the nurse from Kentfield scheduled for later in the week. He did well during acupuncture today, and also was responsive when friends Jesse and Sara came to visit and help with therapy. Betsy said he also responded well with the hacky sack, following instructions to tip it off his head four times in a row. Betsy said she was encouraging Ross during the acupuncture, telling him to work hard because, "this is a prime, Ross. There's a prime for this one." She said he appears to understand.
Please remember Ross in your thoughts and prayers, especially during the coming week when he is being re-evaluated for possible move back to Kentfield and a more intensive therapy regime.
March 1, 2003 7:30 PM--Just talked to Betsy and she said there wasn't much of an update, as Ross slept most of the day. He has acupuncture scheduled for tomorrow, though, so he definitely needs his rest. My website is still down, but I've found a new one to move to, I think, so hopefully we'll get back online without the constant interruptions.
Thank you for your patience and your prayers.
February 28, 2003 8:30 PM--Betsy said today went really well. Physical therapists were with there to do an evaluation on Ross and they were definitely impressed with how far he's come. He was very alert, awake and tracking like crazy, according to Betsy! She said it was wonderful to watch physical therapists working with him and to see the work done correctly...as she said, it's obvious they know what they're doing, whereas Betsy, Rusty and Katie are just doing their best.
So far this week he's had both speech and physical evaluation, and Betsy said she felt really good about both of them.
There is a lot going on right now and Ross really needs your healing thoughts and prayers. Thank you.
February 27, 2003 9:30 PM--Sorry to be so late with the update. Just talked to Betsy and she said Ross had a good day. He was evaluated today by the speech therapist. Betsy said he did as well as he could, and the therapist had some suggestions for thing that might help him. Tomorrow is his physical therapy evaluation. He also had acupuncture today, so it was a busy day.
Please remember Ross in your thoughts and prayers, especially tomorrow during his evaluation. It is so important for the therapists to see what he is able to do in order to insure he gets more therapy.
February 26, 2003 7:40 PM--Betsy said Ross was very sleepy today, although the day went well. He did a lot yesterday, and she's really noticed that a very active day is often followed by a tired one, though after his bath tonight he was obviously more focused and alert. When I called, she said he was lifting his arm as if he was exercising it, and also watching the reflection in the window. Betsy said when she read to him today, he was obviously paying attention.
Thank your for your prayers and healing thoughts.
February 25, 2003 7:45 PM--Just called Betsy and she said she had just sent me an update, so I'm posting her mail:
Ross was sleepy a lot today. But he played the hacky sack game eight times. I tried to do the twenty questions, but he was too tired. We did do the stimulation program and range of motion. The Threshold Choir came to sing today as they have every Tuesday this month. They make a point of including some of the songs I know so that I can sing along. They always include Down in the Valley which I used to sing to Ross when he was a baby and I have been singing it to him since he was hurt. I stood next to him, and he looked intently at me as we sang and then looked at the choir members. When Katie arrived, he was only interested in her.
He has been very congested today, but I think it is because they have a new kind of system for delivering moisture to his respiratory system. Also, tonight his eyes are the same size and seem to be focusing.
Betsy told me during our phone call that she had heard from the parent of another young man who has a brain injury, and she said it's normal for them to be exhausted after a really good day. So, we take each day and look for a better one tomorrow. Thank you, everyone, for your thoughts and prayers.
February 24, 2003 7:20 PM--Just got a terrific email from Betsy:
Today was great! Ross was alert and tracking, but the great thing is this new game with the hacky sack on his head. Ross caused it to roll off his head numerous times. I got it on tape, the aide saw it and he did it for the doctor at 5:00 PM. This is the first time he has been able to do something big for the doctor who usually arrives when Ross is tired or asleep. Thankfully, Ross had slept in the afternoon, had a refreshing shower, and though he was tired, he was ready.
In addition, when we did the 20 questions, Ross looked at the no with his eyes, but for the yes answers he tilted his head and raised his left hand. By the twentieth question, he was really tired, so he answered yes with a blink. Once again, it was something I had suggested in an offhand way, and he picked up on it.
Of course, after I read Betsy's email, I had to call her! It is such a good thing that Ross was able to show the doctor he understands and can follow instructions, because so far, he's usually too sleepy when the doctor finally get by his room.
Thank you for keeping Ross, his family and Katie in your thoughts and prayers.
February 23, 2003 7:40 PM--Just talked to Betsy. She said today they watched a video with Ross that our son Jon and his fiancée, Melanie, put together for Ross. They filmed his "old stomping grounds," from his first apartment in Boston to the place where their friend Adam works at the top of the John Hancock Building. Betsy said Ross watched quite a bit of it before falling asleep, but they'll play it again for him. She said it was really a neat tape. Another old friend from Ross's Empire Velo Racing days was there to visit today, too. Jesse and his fiancée Sara spent much of the afternoon with Ross. Visitors are really important to him and his parents encourage his friends to stop in when they can.
Betsy said Ross was sleepy today after his busy day yesterday, which is typical. Betsy has been tied up with business and hadn't seen Ross for the past two days. Rusty has been there with him, along with Katie. Betsy said she actually noticed a difference in him over even that short a period of time, and thought he looked better.
Thank you so much for your healing thoughts and prayers for Ross, his family and his fiancée.
February 22, 2003 8:25 PM--Another update from Betsy:
Update from Rusty since I worked at home today. Once again, Ross was slumped on his right side and very uncomfortable when Katie and Rusty arrived this morning. After the morning routine of repositioning, raising the head of the bed more, washing his face, and talking to him about the day, he was happier. I always think at this times, "What if we weren't here?"
In terms of functioning, Ross did well. We purchased a hacky sack (a small, soft knitted ball) yesterday. Today, Katie worked with Ross using the ball. She would place it on his head and ask him to make it fall off by tilting his head. Rusty said it took awhile, but Ross learned to tilt his head so the ball would fall. This movement is a small thing for a healthy person, but for Ross to learn to do it is progress and the sort of thing that shows intentional movement. Later, both Rusty and Katie tossed the ball in the air, tossed it at Ross, etc., and he tracked the ball intently with his eyes. They tried having him hold the ball and move it, but he wasn't able to do that yet.
He received a massage from our friend. He also received his second acupuncture treatment this week. Rusty said the acupuncturist was very pleased and Rusty thinks Ross may have been the most responsive ever. Ross moved his limbs and his head. When the needles were being placed in his feet, he actually looked at his feet and appeared to be focused on them.
Ross has a most amazing support group--his family, his fiancée, his many friends--and everyone who reads the daily updates and continues to pray for his recovery, to hold him in their thoughts and wish him well. Thank you so much for staying with him through this long recovery.
February 21, 2003 7:00 PM--Betsy sent me an email with tonight's update:
Dear All,
Today was my day off, so Rusty called me with the update. Ross was very distressed this morning. The nurses got him up into the recliner and Rusty took him down to a guitar concert that was being given on the unit. Ross became even more upset and started to sweat profusely. This is usually
a symptom of physical discomfort or emotional upset. Rusty thinks that Ross was upset because he was surrounded by patients who are all very injured or ill, and he realized how hurt he is This is the first time he has been with the other patients.
When Ross was put back in bed, he fell into a deep, restful sleep for a couple of hours. When he awoke, Rusty had him sitting up on the edge of the bed for 45 minutes, the longest time yet. He said Ross did very well, and when Rusty put Ross's head up, he held it there without letting it fall.
When Rusty called me, Ross was back in bed and still very alert and tracking.
Thank you for your prayers and support. Ross is working hard and progressing, and he has so far to go.
February 20, 2003 7:30 PM--I just spoke with Betsy. She said Ross had a really good day today, and it got better after acupuncture. She said he is always more alert following a treatment (the acupuncturist comes twice a week) and she notices him slowing down when he's gone a number of days between, but today she said Ross was so alert it was absolutely phenomenal.
Betsy has a board with the words YES and NO in color. She hasn't used it in awhile, instead relying on having Ross blink for his answers to questions. Today, though, she pulled out the Yes/No board and went through the regular series of twenty questions with Ross. She said it was obvious he was understanding and answering the questions...if he can develop and continue with this, it will be a huge step forward in convincing the doctors of his progress.
He's doing so much better every day. Thank you all for keeping him in your thoughts and prayers.
February 19, 2003 8:20 PM--Betsy said Ross had a good day today. They got him up on the side of the bed and he did well. She and Katie also took him up to the sixth floor, pushing his reclining chair (not a true wheelchair) to the upper floor which let him be out of doors a bit. Betsy said he appeared fascinated by the plants and the change from his hospital room.
Katie and Betsy met with one of Katie's law professor's who also has a son who has suffered a traumatic brain injury. Betsy said she told them of all the struggles they had gone through to get her son into rehab--at 27, Betsy said he is an impressive young man who is more than willing to help them with Ross.
Ariel, Ross's sister was there as well, today, and reported to Betsy that during Ross's bath, it sounded as if he said "Mom" again. As Betsy said, Ariel's a skeptic, so if she thinks she heard a word, it's most likely so!
Please remember Ross, his family and his fiancée in your thoughts and prayers. Thank you for keeping tabs on his recovery through the website.
February 18, 2003 7:30 PM--Just talked to Betsy. She said Ross had a good day--nothing really exciting other than the sense he is more alert with each passing day, more aware of the activities around him. He pays close attention to the nurse when she changes his feeding bag and such, and is constantly tracking and watching the activities in his room. Betsy said he didn't move his hands as much today, but he was very much involved in what was going on around him.
Thank you for your thoughts and prayers, for keeping Ross with you throughout the day. I am constantly amazed by the number of emails from those of you who follow this site on a regular basis and who pray for Ross, his fiancée and his family. When I first set this up, it was for Ross's close friends and family out of the Sonoma County area to keep track of his recovery. I had no idea how many of you from around the world would take his story into your lives. Thank you.
February 17, 2003 8:50 PM--Ross had a quiet day today, but Betsy said all went very well. He became more alert as the day progressed, and was very aware of a visitor who stopped by. Ross watched intently wherever Cody moved about the room. Betsy said they sat Ross up on the edge of the bed and he was able to hold his head up. When I talked to her just a bit ago, though, he was sleeping.
Please remember Ross in your thoughts and prayers, and if you're in the Berkeley area, please stop by and see him. He can have visitors at any time, and Betsy said he really responds to new people dropping by.
February 16, 2003 7:20 PM--I'm back and just received an email from Betsy that updates Ross's condition for yesterday and today:
Saturday was another good day for Ross. His acupuncture session was very good. Again, he moved his head and all four limbs with stimulation and commands. Ross's focus length is about four to six feet from his eyes. He follows with his eyes, moving his eyes to the left and moves his head.
In the evening, we sat Ross on the edge of the bed for practice in holding his torso and his head up. We had him sitting with his left hand extended and helping to stabilize his position. I was concerned because his hand was in a fist. I kept talking about trying to lift his arm, so that we could open up his hand, but his weight on the hand made it hard for me to move. Suddenly, Ross lifted his left arm, opened up his hand and put it down again. I am convinced that he lifted his arm and opened his hand because I was talking about it.
Later in the evening, Ross awoke from a nap and was moving his head: lifting it, turning it, moving his shoulders, bringing his head forward in ways we have not seen since he was hurt. He became very upset, crying and making sounds of fear or upset. We asked if he were in pain, and he did not blink "yes." We changed his position and reassured him and the upset passed.
This morning, he was alert and tracking for four hours. Rusty did the Sensory Regulation Program with him, and most of his responses were localized. Rusty also did the Rapport Scale again and Ross scored the highest yet. Ross is definitely making progress. His extremities are much more relaxed today also.
When I talked to Betsy tonight she sounded really excited. I think she's seeing even more improvement in Ross than she writes of in her very "conservative" emails! Thank you, everyone, for your healing thoughts and prayers for Ross. He is definitely showing improvement.
February 14, 2003 7:00 PM--Had kind of a crummy cell phone connection when I spoke with Betsy tonight so our conversation was brief, but she said Ross slept most of the day, his blood pressure was in a more normal range and his pulse around 53. When he was awake he was very alert and able to hold his head up when the nurses helped Rusty sit him on the edge of the bed. The Activity Director said Ross is really comprehending now. Betsy commented it's always nice when someone at the hospital notices how he's improving!
I have to be away for the weekend to attend a funeral, so there will not be an update tomorrow night. The next update will be on Sunday. Thank you for keeping Ross in your thoughts and prayers.
February 14, 2003 7:55 AM--I just received an emailed addendum from Betsy to last night's update:
Ross's blood pressure was up to 117/63 when I called at 9:30 last night. I did forget one thing about the acupuncture session in the update. For the first time, we saw Ross look at the source of the stimulus, the needle in his left foot. Onward and upward.
February 13, 2003 7:55 PM--Betsy said Ross had a pretty good day today, though his blood pressure was unusually low, at one point down to 99 over 47, then going even lower in the afternoon. He also appeared to be really sleepy. She's wondering if, by chance, whatever has been keeping his blood pressure fairly high has resolved itself and he can finally be taken off the drugs to control it. He was not given the medication this afternoon, considering his readings.
Ross also had a good acupuncture session, moving his head, focusing and tracking and moving both hands. Betsy also said that when she did range of motion exercises with him, Ross was able to push just a bit farther on each movement than he has in the past.
Baby steps, maybe...but consistent and always forward. Thank you for your healing thoughts and prayers for Ross.
February 12, 2003 7:15 PM--I just talked to Betsy. In her words, "Ross was awake and alert today, but I have the feeling he is a bit perturbed with the world." Understandable. I'm sure we all have days like that! He had a massage and is doing well. As Betsy said, "more of the same, but better."
Sometimes I'm frustrated there isn't more to write, and then I realize how far Ross has come, and how much he has healed...and how much more is still ahead in his recovery. Thank you, everyone, for being there, for your prayers and healing thoughts. You are all a very important part of this long and often painful process. I hope you'll be here when I can finally report there is no longer a need for Ross's website, that he is healthy and well, and fully recovered.
February 11, 2003 8:15 PM--Just talked to Betsy and she said Ross had a quiet day today, though she did say that when he was in the bed and also in a chair that keeps him in a reclining position, he lifted his head a full six inches off the pillow. He did this numerous times. He also brought his knees all the way up to his chest, something Betsy hasn't seen him do before. He appears very alert, and Betsy said it definitely looks like there is more and more "stuff" working together.
Thank you for remembering Ross in your thoughts and prayers.
February 10, 2003 7:30 PM--Well, the website is finally back up and I've got nothing to report! Betsy said Ross slept all day today, so I guess we'll expect great things tomorrow! Please remember him in your thoughts and prayers.
February 9, 2003 8:07 PM--The website is still down, but I've got a note from Betsy:
Ross had a good day. He was very sleepy when we arrived in the morning, but later was working very hard to move. When the acupuncturist arrived, he was tired. He did well, not as much movement as last week, but no coughing and no involuntary spasms in his legs. I am reminded of what a nurse said in Santa Rosa. Recovery is up and down, with the highs and lows becoming higher. Ross continues to follow us with his eyes, moving his head, communicating with one blink for yes. Last night a nurse told us that a few days before, when she was bathing Ross, she asked him if he wanted to sit in his chair afterward. She told him to blink once for yes, two for no. He blinked three. She asked the same question two more times, and he responded with two or more blinks each time. She then asked, "Do you want to stay in bed?" He then blinked once. Unfortunately, she did not write it in the chart.
As I am writing this at 7:00 PM, Ross has awakened from a nap and is practicing raising his hand with his index finger extended. He has raised it fourteen times so far, putting it down and relaxing it between each lift. He also moved his right arm up, which is very hard work, and then put it back down.
Hopefully the website will be up shortly and you'll be able to read the updates. Today was the Cherry Pie race in Napa. The sun was shining and it was a gorgeous day. So many people asked about Ross and said they were thinking of him. It was a wonderful reminder of how many people are praying for his recovery.
February 8, 2003 7:30 PM--Ross was sleepy today. Not much to report. The website is still down. Thank you, everyone, for your thoughts and prayers for Ross's recovery.
February 7, 2003 7:15 PM--The website is still down, so you may not see this update for a day or two. I am currently looking for another webhost. If anyone can suggest a company with reasonable rates that accepts more than one domain, please let me know at [email protected].
Betsy sent an email update:
I wasn't with Ross today; Katie and Rusty were and have the first hand experience. When Rusty arrived, he was scrunched up on his right side and uncomfortable. I frequently find him like this when I go in the morning. He does not like being on his right side for very long. Ross wanted to sleep this morning. He moved his head away from the wet wash cloth (usually he turns his head so we can wash his face.) He also apparently resisted the lemon swab in his mouth which he usually likes. He was toney in his legs. He did seem a little sore-I did some hamstring stretches that I had forgotten about yesterday.
Later, in the afternoon, when he woke up, he was alert. Rusty did the sensory regulation program and Ross did about the same as he has all week. When Rusty did range of motion, he felt Ross was letting him, Ross was more flexible and less toney in his legs. Rusty had him sitting on the side of
the bed for 30 minutes. Ross could not lift his head from the chest position, but he raised his eyebrows, trying to left his head. Katie said that when they lifted his head up, and centered him, he was able to maintain it in that position for up to three minutes. When his head dropped, he
didn't go into a fully head down position, but his head was 2/3 of the way down. Unfortunately, they were not able to video it.
I forgot Ross's tracking. He followed the blue ball, moving his eyes and his head to the right, 2/3 of the way to the left, then turned his head left, up and down. moving head and eyes.
Betsy
Thank you for your continuing support and for your prayers.
February 6, 2003 7:30 PM--Just talked to Betsy. She said today went really well. She commented that what struck her the most today was the realization how "there" Ross is. He's so much more aware of everything around him. He'll study shapes and such...the ribbing on her sweater, the tiles in the ceiling. It's almost as if you can see him processing the information. Even teh acupuncturist commented that Ross understands the instructions he gives and tries to do what is requested. Betsy said when she does range of motion exercises, she can feel Ross "helping" her, and Katie commented on the same thing. Katie got to the hospital this afternoon and was working on Ross's right arm, the one that is usually fairly stiff, and she said he was definitely trying to help.
Everyone working with Ross now equates the activity with training and exercise. Betsy said she tells him he is training for the biggest race he's ever done, and she believes the terminology makes a difference. Cognitively, Ross appears to understand more every day.
Thank you all for keeping Ross in your thoughts and prayers.
February 5, 2003 7:45 PM--Got an emailed update from Betsy tonight:
Ross had a good day. He continues to make more sounds-mostly when he is troubled with the secretions that collect in the area of the tracheostomy. When he was coughing tonight, he made a sound that sounded like "Ross" to both the nurse and me. He has been alert, tracking, and looking up, down and around the room. We have been able to complete the sensory regulation program given to us by OT (occupational therapy) three times today. We are also working on yes/no responses with Ross closing his eyes for yes. We listened to James Herriot's Animal Stories today. Ross has been very attentive. All of this, range of motion and two naps has filled the day.
Thank you for keeping Ross in your thoughts and prayers. He continues to improve every day.
February 4, 2003 7:30 PM--Betsy said Ross did really well today and was very alert. He appeared to be studying things around him, concentrating on the tiles in the ceiling, the windows and blinds and generally looking around the room very intently. We wondered if his vision might be improving, allowing him to see things more clearly.
Betsy said they started on the sensory stimulation program the physical therapist gave her to try with Ross. She was really surprised to discover he had much more localized responses than she had anticipated. Hopefully, this series of tests will provide the proof the therapists and doctors need to see Ross is improving and needs more therapy.
Some women from the Threshold Choir stopped by today. They come to the hospital and sing for Ross. Betsy said he was definitely interested and seemed to really focus on them.
His mouth is open more often, something Betsy said he only used to do while sleeping. He's moving his jaw and making more sounds. He's definitely doing better every day.
Please remember Ross in your thoughts and prayers. On another note, I would like to thank those of you who continue to post such nice notes to the guest book, or who write to me or the family privately. Your notes really mean a lot to all of us.
February 3, 2003 7:40 PM--I just talked to Betsy. Ross had a good day, though when she got to the hospital around 9:30 he was all scrunched up on his right side in the bed and looked very uncomfortable and sad. She said she went through their regular morning routine of opening the curtains, washing his face and making him comfortable in the bed, at which point he promptly fell asleep! He woke up at 11:00. Betsy said she sat him up in the bed and he was able to maintain his upright posture. He's improving daily at holding himself upright, turning his head and moving his neck, motions he couldn't do just a short time ago. He opens his mouth more and is making a lot more sounds. She said when she compares what he is able to do now to what he was doing just a month ago, there is a huge difference.
It's been eight months now, since Ross was first injured. This has been a long and difficult journey, with a lot more miles yet to travel. Thank you for remembering him, for keeping Ross, his family and fiancée Katie, in your thoughts and prayers.
February 2, 2003 7:10 PM--Betsy just emailed an update:
Ross did well today. His feeding tube was replaced this morning because the old one was clogged. We are still working on a way to get yes or no responses. If we say, close your eyes, he will do it. However, we are still
not sure when we say, "If the ball is blue, close your eyes," that he is closing his eyes because we asked him to, or because the ball is blue. This week we will working on this question.
Ross worked beautifully today with the acupuncturist; he followed commands, was able to do many things more easily than before: tracking, looking at the localized source of pain, moving his head, moving his limbs.
We are very blessed to have such a fine acupuncturist who gives such positive feedback to Ross.
The healing process is so slow, but in looking back over the last few months, we definitely see positive and momentous improvements in Ross's alertness, his responsiveness, and his physical condition.
Tomorrow will be the 8th month since Ross's accident on June 3. He really has come a long way, especially when you realize he was not expected to survive, and then not only had to undergo so many serious surgeries, but also the septic shock infection that was such a serious setback. He truly is a fighter, but he has an amazing team of supporters behind him. Thank you all, so much.
February 1, 2003--Received an email update from Betsy:
Ross did well today. The night nurse said that he only slept two hours last night, so we tried to keep him awake. Rusty did extensive range of motion and we sat Ross upright in the bed. He was very alert and tracking well. He held his head up pretty well and kept his torso pretty straight. We are pressing him to make more sounds. He is definitely sad; we are talking to him about it, and are trying to help him put some of that energy into anger. Very close friends who hadn't seen him for two weeks visited today and commented that he was obviously trying to communicate.
Betsy explained to me earlier she had learned Ross's sleep patterns could be a sign of depression, as he becomes more alert and awake, and aware of his physical limitations. They are hoping to push him harder, to turn the sadness into anger at his situation in the hope it will force him to try even harder. It's really difficult for them, but so important to Ross's recovery. Please keep all the family, as well as Katie and her family, in your thoughts and prayers.
January 31, 2003 7:30 PM--Rusty said Ross appeared upset but very alert today. He spent a lot of time working with him, doing range of motion exercises. Katie's mom, Sally Meyers was there as well and helped Ross to sit up on the side of the bed. He's able to hold his head up on his own, now, something he couldn't do just a few weeks ago.
Physical therapy is making up a list of twenty different things to do to work with Ross that need to be done five times a day, but only when he is fully awake and alert. Most of the tasks are speech therapy and different things to help document Ross's improvements.
One thing Rusty reported--he was doing range of motion exercises on Ross's leg, which really seems to hurt him, but has to be done. Rusty told Ross he was going to keep doing it until Ross groaned to let him know to stop. Ross groaned. This happened on two separate occasions, so he knows it wasn't just coincidence.
Betsy said Ross is obviously very aware of what is being said to him. He's following commands and watches when people talk. We're still waiting for more words! Thank you, everyone, for your continued support and for your thoughts and prayers.
January 30, 2003 7:10 PM--Nothing as exciting today as yesterday, but Betsy said Ross had a good day, and an excellent session with the acupuncturist. He's very responsive when the doctor treats him, and definitely aware of the needles. He is sleeping a lot during the day, so Betsy has asked the nurses to check him during the night to see if he's awake then. He's making more sounds, holding his head up and also holding his torso up. Thank you for your thoughts and prayers, and also, thank you everyone for your wonderful notes sent privately and to the guestbook. I copy all of them for Ross.
January 29, 2003 5:20 PM--Betsy just told me Ross said his first really clear word today. He was clearly frustrated and uncomfortable after having his trach suctioned and changed and trying to cough--Betsy said he mouthed the expletive "Shit," but said it loud enough she could hear it, and then he promptly fell asleep. J As one friend said, I 'm sure most cyclists have said the same under less difficult circumstances! In technical terms: It means he has injury to his frontal lobe which is ok but the good news is that his left fronto-temporal Broca's area is working.
On the down side, Betsy finally got the definitive answer from Physical Therapy about why Ross no longer gets therapy and why there is no tilt table trial, even though one was ordered by a physician. Ross is getting only maintenance, not skilled therapy. They've decided he's not getting better. The fact that no one comes in to observe or take note of the daily improvements noted by his acupuncturist, family or the nurses obviously doesn't count.
It is getting harder and harder to listen to the powers that be who act as if Ross is not improving, especially when it is so obvious to everyone who spends time with him that he is. Thank you so much for your prayers and for keeping Ross in your thoughts throughout each day.
January 28, 2003 8:00 PM--Just talked to Betsy. She said she was in Ross's room at Herrick and they had the TV on. He was watching Seinfeld, a show he used to really like. Betsy said he definitely appeared to be paying attention to the program.
The physical therapist didn't show up today as expected, though, as Betsy said, there has never been an official schedule for therapy. She sounds so frustrated when I talk to her. Few of the things she has been told would happen to help Ross have occurred. I know it just makes her nuts. We talked a bit about becoming proactive when our children are involved. I doubt there is a mom out there who can't find a stronger will and a more powerful voice if it means helping her child.
Please remember Ross in your thoughts and prayers, and especially remember the people who love and care for him. They are fighting a battle not just to get Ross well, but to force the system to help, not hinder his recovery. It's an uphill battle and it shouldn't have to be.
January 27, 2003 8:00 PM--Betsy said Ross had a quiet day today, but he was very alert. She suspects he is having more trouble with double vision, though it's difficult to be certain. He's definitely making more noises--groans, moans, etc.
There is an article in today's Oakland Tribune about Katie and Ross. The link is: http://www.oaklandtribune.com/Stories/0,1413,82~1804~1139764,00.html#
Please remember Ross, his fiancée and their families in your thoughts and prayers.
January 26, 2003 8:00 PM--Just a brief message tonight--Betsy said Ross slept until the acupuncturist arrived, then responded very well to the treatment. He was moving his head to the left, which has been difficult for him, and is showing equal response now in both sides. After the acupuncturist left, when Katie was standing close by Ross, his eyes were moving to follow her and he was crying.Betsy and I talked about the fact he is probably becoming more aware that something is terribly wrong. I know this has to be so hard for his mom and dad, and especially for Katie. Please remember them in your thoughts and prayers. Ross's family and fiancée really need your strength and encouragement.
January 25, 2003 8:00 PM--Ross got a massage today and the masseuse said his legs appeared to be softer, not so tense. He did not receive any physical therapy last week through the hospital (the masseuse is a family friend who comes in) but hopefully the physical therapist will be in next week. It's been very frustrating, especially since it means Rusty, Betsy and Katie have to do all the range of motion exercises for him themselves. He's also not yet gotten the wheelchair that was promised, which means he is still confined to the hospital room. He's sleeping soundly tonight, though Betsy said he has been sweating a lot the past few days, which can be a sign he is experiencing physical discomfort, though he also perspires heavily when he's working hard in therapy and trying to respond to commands.
Please keep Ross and his family and fiancee in your thoughts and prayers. If you're in the East Bay, look for the Monday edition of the Oakland Tribune, as Betsy said there should be an article about Ross in that issue of the paper.
January 24, 2003 10:00 PM--This update will not go up until Saturday, as my local server is experiencing problems. I got my update from Ross's dad tonight. Rusty said Ross had a good day, though he's concerned that Ross's legs are getting tight and the tendons are beginning to shorten. Rusty said they got him up on the side of the bed and were able to do range of motion exercises and also get his feet on the floor, which helps. A tilt table would really help, but so far they have been unable to get one authorized by the hospital.
Katie was there early this morning, before Rusty, and working with Ross with a blue ball they have that's about the size of a softball. She puts it on different areas of the bed, and Ross looks for it, moving his eyes as well as turning his head. He's beginning to move more to the left, a direction that has been difficult for him since being injured. Katie also said that when she tossed the ball toward Ross, he raised his right arm in response, whether as a defensive motion or to try and catch it, she wasn't sure. Ross is also very aware when people are in his room and moving about the room. He follows them with his eyes, often turning his head.
Rusty said he's also in motion a lot, as if he's working out, stretching his muscles and grunting. At Katie's suggestion, they refer to all the physical therapy they do with him as "exercise," since, as a cyclist, that's something he's obviously programmed for. It appears to be working.
Thank you for keeping Ross in your thoughts and prayers. He is showing so much improvement, but he still has a long way to go.
January 23, 2003 7:45 PM--Not much to report tonight. Ross slept most of the day. The trach was changed this morning, which is a fairly traumatic procedure for him, but Betsy said it was necessary. His breathing this morning was quite labored and when Ross was asked to make a sound if he was in pain, or if his chest hurt from breathing, he responded with a groan.
As Betsy said at the end of our conversation, hopefully tomorrow will be better. Please keep Ross, his fiancée and his family in your thoughts and prayers.
January 22, 2003 7:35 PM--Just a brief update tonight to let you know that Ross is definitely focusing on whoever is speaking now, he's tracking well with his eyes, and other than some irritation with the deflated trach balloon (which should be corrected soon) he is doing really well. Today Betsy and Katie "played ball" with him, holding the ball in his hands and tossing it. He is showing more response to things every day.
Thank you for keeping him in your thoughts and prayers. Things are definitely looking better every day.
January 21, 2003 7:40 PM--Had an email from Betsy a few minutes ago. She wrote:
Ross had lot of respiratory secretions that he was trying to get out. Although the mucus was thick, it was white. This may be related to the trach needing to be changed, which can't be done until Thursday when the doctor is here. We worked with the yes/no board, this time with the yes at the top and the no at the bottom. He seems to be better able to work with it vertically. Katie and I again tossed the ball across the bed so he can get more practice tracking to the left and hopefully move his head to the left more. He has been awake a lot over the last two days. He did not sleep more than two hours during the day Monday or Tuesday.
I also talked to Betsy, and the one thing she emphasized is how far Ross has come since he was at Kentfield. In the months since his surgery, in spite of the setbacks with infection and all, he is still much farther along than he's been at any time since the accident. Thank you all for keeping Ross in your thoughts and prayers. I really believe it's not the one big miracle, but the many little ones that will bring him back.
January 20, 2003 8:00 PM--Just had a brief conversation with Betsy. Ross was awake most of today but is tired tonight. She said he is tracking really well. She and Katie tried tossing a bright blue ball back and forth across the bed, and Ross followed the movement. They used the "yes/no" board for questions, but his answers are still not consistent. Betsy did say Ross was definitely aware Katie was back (she was away for a few days) and really tends to watch her wherever she is in the room. Betsy said, for instance, the acupuncturist was trying to get Ross to look to the left, but since Katie was on his right, that's the only direction he would look!
Thank you for keeping Ross in your thoughts and prayers. And please, if you don't mind, pass the word the website is back up and running. We're hoping this is the last of the problems and it will remain functional.
January 19, 2003 7:30 PM--The website should be back up late tonight or early Monday morning, so will get everything posted asap. I just received the following email from Betsy:
Ross is resting. He had a good session with the acupuncturist. His vital signs are a little higher this afternoon, but he has not been sweating heavily as he was the last two days. He is tracking and responsive. Friends visited today who had not seen him since October and they were surprised at how much better he was doing.
I apologize for the inconvenience with my disappearing website. Please keep Ross in your thoughts and prayers. His improvement now is noticeable, day by day, though the process of healing is very slow. Thank you so much for thinking of him.
January 18, 2003 9:30 PM--My website is still down but I'll continue to update and will post the information once the website is up and working. The server is located in Oklahoma, and I have a feeling the bad weather there is creating the problems.
There was no update on the 17th as we were out of town. Tonight, however, I had a phone call from Betsy and she said Ross had a really good day, he was very alert and obviously aware of the people who were there.
She said he was working hard to follow commands and tracking really well. In Betsy's words, "It's really wonderful."
Thank you so much for keeping Ross, his fiancée and his family in your thoughts and prayers.
January 16, 2003 7:30 PM--If this update shows up late, it's because the site was inaccessible again. I'm really having problems with my host, but keep thinking it will get better! In the meantime, I've just gotten a note from Betsy:
Ross was very alert today. I did tracking with the mirror with him; he moved his eyes from right to left and up. He moved his eyes downward briefly. However, with the acupuncturist he moved his eyes right to left, up and definitely down, even tilting his head down to see. His response to commands was immediate, even though occasionally he couldn't do exactly what was asked, we could see him trying. He moved all four limbs and his head from side to side as well as down. We are so indebted to the acupuncturist; Ross really responds to him.
We continue to work on following commands ourselves, but Ross is more consistent with the acupuncturist than with us. We are also developing a list of simple questions with which to answer yes/no. I am also working on identification of people in pictures, but that requires more complexity. I did think today that I saw some progress. After his bath at 7:00, Ross is sleeping peacefully and relaxed.
Please continue to remember Ross, his fiancée and his family in your thoughts and prayers. His progress is slow but consistent, and your support is so important. Thank you.
January 15, 2003 7:30 PM--Got an email from Betsy tonight:
Ross was very alert in the morning. He tracked with a mirror to the right, left, up and down. He seemed to answer some simple questions about people in pictures by looking at the yes/no board. He also closed his eyes on command. The respiratory therapist said she has to get permission to do the Passy-Muir trials daily.
When I left at 2:00 P.M., Ross was sleeping peacefully and very relaxed. When he was weighed on Monday evening, he weighed 159.6. The dietitian has now reduced the flow rate on the feeding, since they don't want him to gain much more.
Betsy was heading back down to Berkeley this evening, so if I hear from her again, I'll add more to the update. In the meantime, I want to thank all of you for your continued prayers and healing thoughts for Ross. His support group is absolutely amazing!
**Just talked briefly to Betsy and she said Ross was sleeping in his recliner now, but he's very relaxed, his muscles are not at all tight. He's moving his right foot, another sign that there is no spinal damage. He also moves his left, though not quite as much.
January 14, 2003 7:20 PM--Just talked to Betsy and she said Ross was asleep in his recliner, but that when he was awake today he was very alert. Both the physical therapist and speech therapist spent time working with him today. The speech therapist was there mostly for evaluation today. Ross also had a half hour of Passy-Muir Trach time...this will be an ongoing process until Ross can breathe on his own.
Betsy's still trying to get a wheelchair authorized for him. Everything is such a frustrating, slow process.
Thank you, all, for keeping Ross, his family and Katie in your thoughts and prayers.
January 13, 2003 7:10 PM--Here's Betsy's update for the day:
Ross is sleeping, looks peaceful. I awakened him for the Passy-Muir Tracheostomy Trial. (RT deflated the trach balloon, put special cap on the trach tube, air now goes past vocal cords up into back of throat so Ross can make sounds.) Ross handled this well - 99% saturation rate. After 2 hours, his breathing became labored and the saturation rate dropped. Good start. We will try again tomorrow.
Ross made sounds and seemed to be trying to say "ma" several times. Ross slept most of time. Range of motion afterwards-Ross continued to sleep for part of it, but was toney. (Muscles tense) Ross slept a lot today and was relaxed; he does not seem tired and sore like over the weekend. I did some picture IDs with blinking in the morning. I gently massaged his head throughout the day as the acupuncturist instructed.
Thank you for keeping Ross and his family as well as Katie in your thoughts and prayers.
January 12, 2003 9:40 PM--Just got an emailed update from Betsy, so will post it:
Ross slept most of the day. He had acupuncture in the early afternoon. Since Ross was tired, the doctor did not give him as intense a session in order to encourage the deep rest. He was concerned that Ross might have been battling a low grade infection. The acupuncturist pointed out that Ross was moving all four limbs on command, which means that he probably does not have severe spinal cord damage. Ross is also demonstrating some cross over from needle stimulation on one side of the scalp to the opposite side in the
body. Ross got range of motion. He was much more comfortable after a shower and massage from the nurse's aide, and was more alert, tracking and trying to make sounds.
Please remember Ross as you go about your day. He needs your thoughts and prayers now, more than ever, as he struggles to recover.
January 11, 2003 8:00 PM--Talked to Betsy tonight. She said Ross seems very sad, and today he was uncomfortable, as well, and also running a low grade fever. When Andrew arrived in the morning he felt that Ross was in an awkward position on the bed, and that might have accounted for some of his discomfort. He's still not able to move himself, though Andrew said Ross did push against him with his leg during range of motion exercises today.
He got a massage today. The masseuse said he responded as if his muscles were "achy." The aide came in and gave him a shower. Betsy said he was sleeping peacefully this evening, though he was definitely alert throughout the day.
Thank you for keeping Ross, his family and Katie in your thoughts and prayers. Most likely the sadness is a sign he is becoming more self-aware and knows that something is terribly wrong. As his mom said, he is definitely in the biggest training endeavor of his life, and it's something he really can't do all alone.
January 10, 2003 7:50 PM--Just got an emailed update from Betsy.
Ross seems tired and sad today. He was tracking, but more subdued. He had range of motion and the physical therapist showed Rusty and Andrew how to work his shoulders. The physical therapist had him sitting on the side of the bed and working on the righting reflex, the reflexive tendency of the body to right itself when we start to lose our balance. He then sat in the chair for an hour. He is currently getting physical therapy two half hour sessions a week. The physical therapist thinks he is ready for tilt table work to strengthen his lower extremities.
Please pray for Ross. As he is more and more alert, he is surely aware that he has to work very, very hard. And pray for us as we try to encourage him in the biggest training endeavor of his life. Thank you all for your support. The response to my request about research was wonderful.
As a side note, a friend who is a doctor familiar with head trauma sent us an interesting note tonight that might explain Ross's sadness. He wrote: When teenagers come out of coma, they usually go thru an agitated phase. Ross, as an adult, will go thru the depressed self awareness phase. Just as you noted.
January 9, 2003 8:50 PM--I apologize for the late update, and also if things look a bit different. My computer "hiccupped" today and I lost the website back to August 24, so have spent the evening rebuilding it.
I talked to Betsy a couple of hours ago and she said Ross had a good day, though he still appeared tired. His social worker came by to see him, though, and commented on how alert he appeared and how well he was tracking.
Andrew did range of motion exercises with him, and both Betsy and Andrew managed to get Ross up sitting on the side of the bed for awhile. The acupuncturist was by and commented on how responsive Ross appears and said he was delighted with his progress and how well he is obeying commands.
Betsy said the big hurdle at this point is for Ross to be able to raise his head every time he sits up. He can do it sometimes, but he's not consistent. However, his vitals are good and Betsy said it's obvious he's showing progress every day.
Thank you, everyone, for your kind notes, your healing thoughts and your prayers.
January 8, 2003 7:45 PM--Just got an email from Betsy with today's update, so will use her words:
Ross had a good day. He still seemed somewhat tired this morning, but became more alert after Andrew did range of motion. We are working on communicating by use of a yes-no answer board. Yesterday and this morning, he seemed only interested in looking at the no side. However, this evening he seemed to answer Betsy's question about listening to another installment of Lord of the Rings by looking at the yes side. He was very alert as he listened to 1 1/2 discs of the book. Today was the third day that I put a paper coffee cup in his hand. The first day his fingers were straight on the cup. This morning, his fingers curved around the cup. He had physical therapy today and the therapists had him sitting on the edge of the bed. He was able to raise his head when he yawned, but he did not raise it on his own as he did last week. He did hold his head in the neutral position and he did hold his trunk by himself against a big ball at his back without any other support. He also is getting weight bearing exercise at these times because his feet are on the floor and his hips are supporting his weight. He continues to track us and he watched Andrew a lot today. At 7:00 P.M. he is sound asleep, his arms and hands relaxed, and his head turned slightly to the left (when he is tense and contracted he wants to turn his head to the right, although the most interesting part of the room is on the right.
I also talked to Betsy on the phone for awhile tonight, and she asked me to put out a request to any of you who might be familiar with books, studies, etc. that might help her become more informed about possible treatments for Ross. Or, if you have the time, to do some searching on the Internet for info that might help. You can reach Ross's mom at TrntyRest@aol.com if you have any information that might help Ross. Of particular interest would be any current studies trying new treatments for traumatic brain injury patients.
Thank you, everyone, for your continued support, for your healing thoughts and prayers for Ross and those closest to him.
January 7, 2003 7:15 PM--Ross had another quiet day. Betsy said he appeared tired and slept a lot, but when I talked with her he was sitting up in a chair and moving his left arm while Andrew worked with him. Betsy said the doctor has increased his dosage of Bromocriptine, which is a brain stimulant described online as "an ergot alkaloid dopamine receptor agonist. It is a strong D2 receptor agonist and a weak DI receptor antagonist. It stimulates both pre- and post-synaptic receptors." Side effects include nausea, which might be the reason Ross hasn't appeared to be feeling well for the past couple days.
Betsy did say his vital signs are excellent, however, and though he appears subdued, he is responsive and tracking well.
Today the Threshold Choir came to Ross's room to sing. This was not their first visit, but today they were accompanied by a reporter and photographer from the Marin Independent Journal. The paper is doing a story on the choir and told Betsy they would include a side story about Ross. She doesn't know the projected publication date.
*Posted 1/8--11:40 a.m. I apologize if this update is posted late. I've been unable to access the website. Thank you for remembering Ross, his fiancée and his family in your thoughts and prayers.
January 6, 2003 8:00 PM--Ross had a typical "quiet day after a good day," which means he was tired but awake most of the day after so much activity yesterday. Betsy said he was very alert, though quieter. Andrew is still here and Betsy said he is absolutely amazing in the way he works with Ross. Ross's vital signs are good. He has had some visitors, which Betsy and Rusty really appreciate. It's good for Ross to have his friends coming by.
Thank you so much for remembering Ross in your thoughts and prayers.
January 5, 2003 8:50 PM--Just got a note from Betsy: Today was another good day for Ross. He was very alert and followed us around the room with his eyes and even moved his head to follow us, both sideways and down. Today was different because he did this all day, not just for a short time. The acupuncturist was very pleased with Ross's responses today. He said Ross was making many voluntary movements. Ross was sitting up in bed, and lifted his head upright a couple of times and held it there.
Andrew came back today, and as usual did range of motion with Ross. Ross's vital signs at the end of the day were very good. At the end of the day, he is tired, but still looking at pictures hanging around his bed.
Thank you so much for keeping Ross in your thoughts and prayers. Lately, it appears his recovery is moving at an even faster pace. I have to believe the energy and prayers from the many wonderful people following his story has a definite effect on his health. Thank you.
January 4, 2003 8:20 PM--Will continue to use Betsy's emails, as they're much more specific than mine: Today was a rest day from acupuncture and physical therapy. Ross was tracking the chicken again this morning, and moving his eyes down and also slightly moving his head in order to keep following the beanie chicken. Ross bent his left elbow upon request. After a nap, he spent a lot of time looking at mobiles and pictures hanging near the bed. He spent a lot of time looking at the picture of Katie and him that is now on the ceiling. He seemed very attentive as we finished listening to Lance Armstong's book on tape. Ross also moved his right leg and foot more today. The movement seemed like stretching and contracting. Katie worked with Ross on lifting his left hand-she would say "hi" and wave. Ross raised his hand three times when she asked, taking about 60 seconds the first time, and about 20 seconds the third time. Twice he didn't lift his hand, but moved it. He really watched Katie as she talked to him. After Katie left, and Betsy talked to him and they listened to the book, he raised his left hand again on his own, over and over, at least ten times. Rusty did range of motion and Ross fell asleep.
When I asked Betsy about Ross's repetition of the motion with his left hand, she agreed that it seemed as if he were "working it." I keep thinking that his cyclist's training and dedication to the sport is helping him in his recovery. Thank you for keeping Ross in your thoughts and prayers. It's so exciting now, to see him making so much progress.
January 3, 2003 8:15 PM--Betsy emailed the update tonight, so I'll put the update in her words: Ross was alert in the morning and was able to track Rusty with his eyes as Rusty moved around the bed. It is still hard for Ross to move his eyes to the left, but he is doing it. Ross was more toney today in his limbs, a day after hard work pattern that we are noticing. After range of motion with Ross's left arm, Rusty asked him to move his left arm. Ross's arm was extended and he bent his left elbow about 5 degrees. He did this on command three times, and each time it took 30-60 seconds to respond.
Rusty and Katie played one of Ross's favorite music CDs at loud, not booming, level and Ross's expression indicated that he recognized it and was interested. Ross slept soundly for 3-4 hours in the afternoon. In the evening, Ross was able to follow with his eyes the little beanie chicken that friends had given him as Rusty moved it down, and Ross tilted his head slightly to keep the object in sight. Ross sat in his chair after his bath. The nurses sat him upright in the chair, just slightly reclined. This is very hard work and requires Ross to use his trunk muscles to hold himself upright-Ross has to be constantly working to keep from falling over. Also, with his feet flat on the floor, he has to pump blood back up to his heart. The color in his feet and legs was improved in comparison to earlier in the week when he first started sitting upright in the chair . When Rusty moved the chair into the reclining position, the color of his feet dramatically improved. A very good response for someone who has been in bed and not up at all for over four months. Ross was able to cough to clear his bronchial tubes and for the third day did not need to be suctioned while we were there.
Thank you for remembering Ross, Katie and their families in your thoughts and prayers.
January 2, 2003 6:00 PM--I just talked to Betsy. She was at the hospital with Katie. Ross had a pretty busy day. His dad worked with him this morning, he had acupuncture and then physical therapy. He spent time sitting in a chair and Betsy said he's able to hold his head up for brief periods of time. The occupational therapist is checking into getting a wheelchair for him, which would at least allow his family to get him out of the hospital room for a change of scenery. Betsy said he is improving daily, something even the nursing staff has noticed.
It will be seven months tomorrow since Ross was injured. In some ways, it seems such a long time, but in others, the months have gone by very quickly. His improvement is slow but steady and we're all hoping for great things in the new year. Thank you so much for keeping Ross and his family and fiancee in your thoughts and prayers. You can't possibly imagine how much your unwavering support has meant to everyone.
January 1, 2003--Betsy said Ross seemed awfully tired today, but after the busy day he had yesterday, it makes sense. Vital signs are good, but Betsy said he appeared uncomfortable. They were just helping him to sit up when I called, though, and he was doing fine.
Thank you for keeping Ross in your thoughts and prayers.
I received this note tonight (2/16/03) from both Ross's family and Katie (his fiancée) and her family. It is posted with their permission:
Since Ross was hurt, the second or third question we are asked by those who hear Ross's story is: "What is going to happen to the driver?" We have not had a good answer to that question, indeed we still do not. But recently we spoke with an assistant District Attorney for Sonoma County who explained the law as it applies to Ross's case.
Had Ross not survived his injuries, the District Attorney could have prosecuted the driver for manslaughter since she drove off the road for no apparent reason and struck him in a marked bike lane. However, the law will not permit, and the District Attorney will not prosecute, any criminal offense for grave bodily injury under the same facts. Because Ross survived, the only other charge with which to prosecute the driver is reckless driving with bodily injury.
The position of the District Attorney's office is that failing to see a bicyclist, driving off the road, and plowing into someone is not reckless.The California Legislature would have to modify the Penal Code sections defining recklessness in order to support criminal prosecution in a case like Ross's.
To us, this means that the law offers no protection from inattentive, incompetent divers - not for bicyclists obeying the rules of the road, not for children walking to school, not for anyone else in the path of an
oncoming vehicle.
Obviously, this is unacceptable.
If you are as outraged as we are that the kind of catastophic injuries Ross has suffered goes unpunished in our legal system, we would encourage you to take action. Write the Sonoma Country District Attorney. Write your representative in the California Legislature. Write your local newspaper or email your discussion group. We have absolutely nothing to lose.
The Meyers and Dillon families.
Ross was moved to Herrick Hospital 2001 Dwight Way, Berkeley, CA 94704 on October 10, 2002.
Ross Dillon
PO Box 1509
Glen Ellen, CA 95442
Thank you to everyone who has so generously donated to the Dillon Family Fund. 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 are used by the Dillon family to help Ross.
Please note: The following information comes from family and friends, not the physicians or therapists. It is based on my understanding of what I'm told. I apologize if I have misinterpreted any of the facts given to me, and will try to keep everything as factual as possible
Insurance news--correction! The insurance company which at first denied Ross any further benefits has finally agreed to coverage while he is hospitalized. Ross has an unlimited monetary cap on his insurance, but it is not a guaranteed lifetime coverage. In fact, he will probably only be covered for, at most, nineteen more months under this policy.That does not include outpatient care after he is released, but it does mean he can be moved to a rehab facility (most likely, back to Kentfield) where he will be able to get intensive daily physical therapy. The money in the Dillon Fund will most likely go for the lengthy out-patient rehabilitation Ross is going to require. Thank you again for your prayers and your donations. The agreement for coverage is nothing short of a miracle.
March 23, 2003 7:30 PM--We're back and I just got off the phone with Betsy. She said the day went well. At one point, the nurses put Ross on his back, just before Betsy and Rusty left for lunch. When they returned a bit later, he had twisted his upper body to one side and was covered with perspiration from the effort. This is something new, for him to move his position in such a drastic manner.
Yesterday, the nurse discovered that his trach was blocked and probably had been for a number of days, which would explain his agitation and--to that point--unexplainable discomfort. After prolonged use of a trach, tissue can actually grow over the opening at the bottom end of the tube and block it, essentially cutting off the air supply. This means Ross has most likely been breathing w/o the trach since at least Friday and probably before. It had been reported as blocked on Friday, but the message didn't make it to anyone who could do anything about it until Saturday.
The move to Kentfield is scheduled for tomorrow at 10:30 AM. As soon as I hear anything, I will post it to the new page, which you can access here: Kentfield.
Please keep Ross and his loved ones in your thoughts and prayers, especially tomorrow when he makes the move back to rehab.
March 21, 2003 7:20 PM--Today Ross went to another concert given for the patients at the hospital, and once again he became quite agitated. Betsy said they're not certain, but they think he might be upset by seeing so many severely injured people around him. The musicians had actually practiced some of Ross's favorite music, but it didn't seem to matter to him. He didn't settle down until he was back in his room. As he grows more aware, he is quite possibly making the connection between himself and the other patients in the hospital.
Betsy also said they're trying to keep Ross awake more during the day so that he sleeps better at night.
The big news today is that Betsy and Rusty found the perfect wheelchair ramp to use at their house. It's seven feet long and folds up when not in use. She said it's exactly what they have been looking for. They were able to pay for it out of money from the Dillon Hope Fund. Thank you to everyone who has donated or who continues to donate money towards the fund. It was set up to take care of expenses exactly like this.
Thank you, too, for your thoughts and prayers and your patience as you hang in there with Ross throughout this long recovery. The next update to the site won't be until Sunday evening. Until then, take care.
March 20, 2003 7:40 PM--Betsy said today went really well. She and Rusty were both at the hospital by 7:30 this morning. They got Ross up on the side of the bed and he did great. She said he lifted his head without help, was tracking--definitely following them with his eyes--and stayed awake and alert for quite awhile. The acupuncturist came by and was also impressed with how well he did. During the session, Ross moved his arms and legs, though movement of his left leg stil lags behind his right, and also moved his head.
Betsy said she's learned that he is not sleeping much at night, so they are trying to keep him awake more during the day. Once he's at Kentfield, with the full regime of physical therapy, he'll have to remain awake and alert for long periods throughout the day.
Please keep Ross in your thoughts and prayers as he gets ready for the move to the rehab hospital on Monday.
March 19, 2003 7:40 PM--Ross will be moving to Kentfield at 10:30 Monday morning. I'll start a new page on Monday, so if you've bookmarked this one, be sure and switch to the new page. I'll have a link at the top.
Betsy said he had a great day today. The speech therapists were there and Ross actually handed the hacky sack to one of the therapists when she asked him to. That's a first. He also tried to throw it on command. Betsy said he essentially just dropped it, but it was definitely in response to a command.
Both the therapists said this was the most alert they've ever seen Ross and they were impressed with how well he's doing.
Ross also had the Passy-Muir test to check his breathing without the trach, and he did very well. Betsy is hoping they'll be able to remove the trach once he gets to Kentfield. It seems to bother him more lately. The therapist told Betsy that could be because, as his awarness grows, he is more aware of the trach and its constant irritation.
Please keep him in your thoughts and prayers throughout this week. On a personal note, I would like to ask you to please hold the good thought for our men and women of the armed forces who have gone into harm's way tonight.
March 18, 2003 7:35 PM--Just talked to Betsy and she said Ross had a really good day. One example of his increasing abilities: she took him out to the patio for some fresh air and he appeared distressed. It was windy, but she wasn't certain what upset him. However, Betsy said he was able to convey, with yes and no head movements and eye blinks, that he wanted to go back inside. She also said that when she was helping him on with his sweatshirt he intentionally bent his left elbow a couple of times to facilitate the process.
He slept for about three hours and awoke when the Threshold Choir was there to sing for him. Betsy said he was very alert and aware of their presence. One of the singers had a copy of the photo that ran in the Marin Independent Journal with an article about the Threshold Choir. The photo includes Ross, and Betsy said he was definitely interested in looking at it.
Things are stilll set for a move to Kentfield this week. Betsy also said they're still trying to find a portable wheelchair ramp for use at home. If anyone knows where they might be able to rent one, please contact Betsy at [email protected]
Your prayers and good wishes are much appreciated. Thank you so much.
March 17, 2003 8:00 PM--Got an emailed update from Betsy:
Ross had a good day. He had speech therapy in the morning where he had the Passy-Muir valve on his trach tube. He did very well; his oxygen saturation rate stayed at 96 and above. He is getting much better at answering yes questions with his head. We still need to work more on no responses with his head. He made some sounds, but has made many more sounds tonight.
I set up the laptop so Ross could see his web site. I read yesterday's update, we looked at the pictures and I read him some of the Guest Book messages. I think he understood that it was about him.
He is asleep now at seven, but he wakes up and looks around before going back to sleep.
March 16, 2003 7:45 PM--Today went well. Betsy said she's decided they must be getting used to Ross's new level of alertness, but they are definitely seeing more awareness in him every day. She used the eyepatch on his right eye today--usually it's over his left when she puts it on him--and he seemed to be more comfortable and possibly able to see better. The patch is to correct possible double vision, and definitely makes a difference in how Ross reacts to images around him.
Betsy said they went to church, and when they came back they had friends with them to visit. Other visitors stopped throughout the day, so there was a lot of activity.
When Betsy gave Ross a neck massage, he lifted his head to help. He also worked with the hacky sack about a dozen times, following instructions to tip it off his head. Betsy said he needs physical therapy in the worst way, but even though it's been promised, it has not been forthcoming. Aside from being fitted for his loaner wheelchair, he's not getting any at all and is not scheduled for any PT for the next week. He's supposed to receive therapy three times a week. It's been very frustrating.
Please keep Ross in your thoughts and prayers, that the move to the rehab center happen as soon as possible.
March 15, 2003 7:50 PM--Betsy just called me to say today went well. Ross was sleeping when she arrived this morning, but Katie was there with him. Her professor's son came by to visit. Matt had a serious brain injury about eight years ago but has since recovered. He spent about three hours visiting with Ross. Friends Jesse and Sara stopped by as well. Ross was sitting up in a wheelchair during their visit. Betsy had put his eye patch on him, which helps correct what the doctor believes is double vision. Besy said Ross was very focused on his friends, quite alert and obviously aware who they were.
Betsy said they also did their usual range of motion exercises with Ross, so it was a very full day.
Thank you again for your prayers for Ross. Please keep him in your thoughts this week as the bureaucratic wheels slowly grind away to get him moved to Kentfield.
March 14, 2003 7:30 PM--Ross continues his pattern of sleeping deeply and then being very alert and active when awake. He finally got his "loner" wheelchair from Herrick today. It holds him upright and he was able to hold his head up on his own. He was in it for over two hours.
Rusty said that today, when he was tapping on Ross's left hand, Ross appeared to be looking at it. As Betsy explained, there has been sort of a disconnect between Ross and his various body parts. He recently began watching his feet when the acupuncturist would insert his needles, but he doesn't turn his head to the left very much. He usually just turns his eyes, though he will turn his head to look to the right to identify sound. Watching his left hand in response to touch is new.
Another noticeable improvement is in the movements of his face. Betsy said when he grimaces in response to a difficult task, in the past only the right side of his mouth would twist. Now the left side of his mouth works more in conjunction with the right. The improvements are slow but steady, and always more noticeable to people who haven't visited Ross for a few days or weeks. Betsy said it's wonderful, though, to see such steady improvement and to know that he continues to achieve new things almost every day.
On another note, it is looking better and better for a move to Kentfield by late next week. I will post here as soon as we know for certain. Please keep Ross, Katie and their families in your thoughts and prayers.
March 13, 2003 7:45 PM--Betsy just told me the insurance company has approved two weeks' care at Kentfield Rehabilitation Center for Ross. That's how they do it--in two week increments, and in order to stay, Ross will have to continue to show improvement. However, Betsy said before he can move to Kentfield, they need to get their home ready for him, with doors wide enough for a wheelchair, bathrooms set up for one and a ramp to get inside. Even though Ross isn't ready to go home yet, the house needs to be prepared in advance before he can be moved to Rehab, so that the folks at the rehab center know he has a safe place to go home to once they have done as much as they can for him.
He didn't have acupuncture today as the doctor was ill with a cold. Betsy said Ross slept most of the day, at least until Katie arrived. Then he was wide awake and alert.
As Betsy said today, the end plan is to bring Ross home as soon as he is ready and able. Even if they have to bring in therapists to treat him there, it will be so much better once they can have him home and out of the hospital and rehab. With your prayers, hopefully that day is not so far away.
March 12, 2003 7:50 PM--Just talked to Betsy. Not too much to report tonight. Ross was tired a lot of the day but when I called he was alert and awake. He did well in his tests today when they covered the trach and had him breathing through his mouth and nose. He's been coughing a lot, so the doctor changed his antibiotics.
Tomorrow he'll get acupuncture. Betsy said he always appears to do better in the days directly following the acupuncture sessions.
Thank you again for keeping Ross, his fiancée and his family in your thoughts and prayers.
March 12, 2003--I wanted to make sure it was all right to post his name and website, and now that I have permission I can publicly thank Kevin Weilbacher http://www.kwsupport.com/csb/ for his generous advice and assistance in helping me to get Ross's website back on line. After moving to the new webhost, their technician and I spent countless hours over many days trying unsuccessfully to get the site to load. In pure frustration I went searching for advice on the web, and found Mr. Weilbacher in a chatroom for users of the same program I have, one which is no longer being manufactured. He was able to determine how we could get Ross's website loaded, though it was midnight before I finally was able to upload the site. Considering the fact he is in Florida and I'm in California, I know he spent the better part of the night working on this. I am absolutely overwhelmed by the fact a total stranger on the far side of the continent would be so willing to help solve a problem that was, for me, proving to be insurmountable. Like I told him, I know just enough to get myself into trouble, but not enough to get out. Thanks to Kevin and his amazing knowledge, Ross's site is up and working like a charm.
March 11, 2003 7:40 PM--I just talked to Betsy and she said Ross appeared tired today after all the activity yesterday. When I called, he was sitting up in a chair while she and Katie were finishing up a take out dinner--Betsy said Ross looked as if he'd much rather be asleep. He had speech therapy today, but he was coughing a lot, possibly a result of the antibiotics.
Not much else to report. No word from Kentfield yet, and they probably won't hear until next week. In the meantime, please keep Ross in your thoughts and prayers as we move through this tenth month of recovery.
March 10, 2003--I can't believe the site is actually up and working! An absolutely wonderful man I found in a chatroom for the program I use which is no longer produced (longevity is not expected in cyberspace!) helped me reconfigure some things and that's all it took. Thank you, too, for your patience. I am sorry it's taken so long.
Betsy said Ross had a great day. He was alert, lifting his head, looking around and lifting his left hand. When his friend Cody stopped in and commented on the shirt he was wearing, Ross looked immediately at the design on the shirt, then at Cody's face. Cody tries to come by once a week at least, and Betsy said he noticed improvements in a lot of Ross's actions that those who are there daily don't really notice.
The nurse from Kentfield stopped in and Betsy was really pleased with the visit. Things are moving along well. Thank you again for your patience and your prayers.
March 9, 2003--Site is still down. Talked to Betsy and she has been offered a place to stay near Herrick, which saves them a lot of driving. Hopefully, it won't be needed for long, as they are hoping to get Ross moved back to Kentfield where he will receive more physical therapy. The nurse from Kentfield is coming Monday for an evaluation.
Betsy said Ross had a good day. Ariel, Betsy, Rusty, Katie and her mom and some other friends were all there decorating his room for Easter. Betsy said there was a lot of laughing and talking, and Ross was taking in all the activity.
Things are moving along quickly now and we are all hoping to get Ross into serious physical therapy. Please remember him in your thoughts and prayers.
March 8, 2003--The website is still down but I know I'll be able to post this at some point! Betsy said Ross was tired today, but following two really active days, that's to be expected. He had a good acupuncture session, but the big concern is a growing number of pressure sores he's developed. As Betsy said, it's a good thing he's on antibiotics! He's got a couple on his feet and one on his finger. The ones on his feet are probably from the special "booties" they keep on him to keep his tendons stretched to a normal length. The one on his finger appears to be an ingrown nail. They're keeping the booties off him for now and watching the finger, as well as giving him antibiotics.
Please keep Ross and Katie in your thoughts and prayers.
March 7, 2003 7:45 PM--I just talked to Betsy. Ross had a great day today. Sat up on the side of the bed, was very alert and looking around. She said a violinist was at the hospital playing, going from room to room, and Ross was very interested and observant while he was there. He was really into the "hacky sac" today, wanting to do it as much as anyone was willing to "play." He tips it off his head on command, and Betsy said he did that over and over.
Rusty had him up and sitting on the side of the bed as well as in a chair for a couple of hours. Also sat him with is feet on the floor rather than reclining. His vitals are good, but he does have some spots that are a bit concerning: a pressure sore on one foot and an infection, possibly from an ingrown nail, on one finger. He's starting antibiotics for those.
Katie made the observation today that his face appears more even. Most of his head injuries were to his left side and that has affected the movement of his facial muscles. Katie noticed today that he appears to be more "even" now, with both sides of his face equal.
I'm still struggling with the website--having a problem with compatibility between my web building program and the host that was totally unexpected. I hope to be online soon. Please remember Ross, Katie and their families in your thoughts and prayers.
March 6, 2003 7:30 PM--Betsy said today went really well. Ross was able to respond with head movements correctly for yes and now answers to questions. For yes he lifts his head off the bed and tips his chin down, for no he turns his head to the right. Betsy said they practiced it before she went through the questions, and he got at least five or six of them right. They sound so simple, but for someone with the severe injuries Ross has suffered, he's doing amazingly well.
I asked Betsy what some of the questions were. She said they looked for things they could ask that were not ambiguous or confusing in any way. For example, two of the "Yes" questions are: Are your eyes blue? and Do you love Katie? Two of the "No" questions are: Is it dark outside? and Are you a girl? The questions have to be really clear and concise.
The acupuncturist was in and said this was Ross's best session yet. He was very alert, moving his head, following the doctor, tracking with his eyes as he moved about the room. He was obviously trying very hard. Betsy said that Ross's injuries were mostly on the left side of his head. he couldn't look past midline. Now he can move his eyes all the way to the side and sometimes he turns his head.
Doctors told Betsy in the beginning that whatever recovery Ross showed in the first year was probably all they could expect to see from him. However, she got a wonderful letter from a woman in Lake Tahoe who had seen Betsy and Katie on TV and wrote to tell them that her son had suffered a severe brain injury about four years ago. The woman runs a preschool, and she said her son's improvement over the past four years follows the development of the children. At first he was blind, but now he sees. In the beginning he was unable to speak, but now he talks constantly. He continues to improve, four years after his accident.
Betsy said they had a patient conference today and everyone was very optimistic about Ross's progress, and very optimistic. Betsy said that when Ross recovers she hopes to hold a national symposium for brain injured patients. She said it's important to show that people can and do recover from such severe injuries.
Hopefully you will be able to read this report before long. My domains are being transferred and I should be able to get the website up by the weekend. I apologize for the terribly long downtime.
Thank your for your patience, for your prayers for Ross and your healing thoughts. You give so much by caring.
March 5, 2003 7:30 PM--Just talked to Betsy and she said Ross had a really good day. He was awake and alert most of the day and did his best ever with the "sensory regulation" program. They worked on two different head movements for Yes and No and Betsy said she felt as if he had a good understanding of what they were trying to do. He did really well with tracking and his vitals were nice and low. e slept from about two to four today, and was very relaxed. She said when the nurses arrived a little after four to give him his bath, he didn't want to be awakened, and was quite vocal about it. It sounded as if he repeated the word, "No."
Thank you for keeping Ross in your thoughts and prayers.
March 4, 2003 7:30 PM--I've signed up with a new webhost, so hopefully we will be back online before too long. I just talked to Betsy and she said Ross was awake a lot more today, especially when they went up to the patio garden, where he was very alert. He did get upset at one point, but the therapist said--and Betsy agrees--that it's most likely because he's becoming more aware of the situation and the extent of his injuries.
The Threshold Choir came to sing to him. Betsy said he slept through much of it, but she expects when he is finally healthy he will remember the songs. They always save some familiar songs for the end of the time they're there, especially Down in the Valley, which Betsy used to sing to Ross when he was little, and which she sings to him now in the hospital. She said she enjoys joining the choir to sing that one.
Please keep Ross in your thoughts and prayers. Again, I do apologize for the site being down for so long. We're doing our best to get it back online as soon as possible.
March 3, 2003 7:45 PM--Just had a brief conversation with Betsy. Ross slept again much of the day, but she said he is definitely showing more mobility and everything about him is more relaxed. One thing she'd noticed is the fact his tongue was resting comfortably behind his bottom teeth. Much of the time since the accident it has been forward. He's lost a couple of pounds from his high near 157, and weighs around 155 now, but he's been doing a lot more therapy and activities, which could account for the weight loss.
I have found a new webhost and will hopefully have the site back in working order before long. Thanks to Marie Salerno for her suggestion. Hopefully, the move will be as smooth as we can make it.
Thank you all for your prayers and your healing thoughts for Ross. As he improves each day, all of us are reminded how much we depend on you.
March 3, 2003 1:30 PM--Betsy just called with some really good news--the physical therapist was in this morning and told Katie that Ross had shown so much improvement they were recommending him for physical therapy three times a week. Speech therapy will also be started, though Betsy doesn't know the schedule for it yet. The last time he was evaluated was a month ago, and no therapy was recommended at that time, though his family and friends have continued with daily therapy for him on their own. I'll have more later this evening, and hopefully will finally be able to post this. My website has been down for five days now.
March 2, 2003 8:50 PM--My website is still down, but I just talked to Betsy and will continue my updates, to be posted as soon as I am able. Ross slept a lot today, again, but Betsy said it's a very restful sleep and she's hoping it's in preparation for the evaluation by the nurse from Kentfield scheduled for later in the week. He did well during acupuncture today, and also was responsive when friends Jesse and Sara came to visit and help with therapy. Betsy said he also responded well with the hacky sack, following instructions to tip it off his head four times in a row. Betsy said she was encouraging Ross during the acupuncture, telling him to work hard because, "this is a prime, Ross. There's a prime for this one." She said he appears to understand.
Please remember Ross in your thoughts and prayers, especially during the coming week when he is being re-evaluated for possible move back to Kentfield and a more intensive therapy regime.
March 1, 2003 7:30 PM--Just talked to Betsy and she said there wasn't much of an update, as Ross slept most of the day. He has acupuncture scheduled for tomorrow, though, so he definitely needs his rest. My website is still down, but I've found a new one to move to, I think, so hopefully we'll get back online without the constant interruptions.
Thank you for your patience and your prayers.
February 28, 2003 8:30 PM--Betsy said today went really well. Physical therapists were with there to do an evaluation on Ross and they were definitely impressed with how far he's come. He was very alert, awake and tracking like crazy, according to Betsy! She said it was wonderful to watch physical therapists working with him and to see the work done correctly...as she said, it's obvious they know what they're doing, whereas Betsy, Rusty and Katie are just doing their best.
So far this week he's had both speech and physical evaluation, and Betsy said she felt really good about both of them.
There is a lot going on right now and Ross really needs your healing thoughts and prayers. Thank you.
February 27, 2003 9:30 PM--Sorry to be so late with the update. Just talked to Betsy and she said Ross had a good day. He was evaluated today by the speech therapist. Betsy said he did as well as he could, and the therapist had some suggestions for thing that might help him. Tomorrow is his physical therapy evaluation. He also had acupuncture today, so it was a busy day.
Please remember Ross in your thoughts and prayers, especially tomorrow during his evaluation. It is so important for the therapists to see what he is able to do in order to insure he gets more therapy.
February 26, 2003 7:40 PM--Betsy said Ross was very sleepy today, although the day went well. He did a lot yesterday, and she's really noticed that a very active day is often followed by a tired one, though after his bath tonight he was obviously more focused and alert. When I called, she said he was lifting his arm as if he was exercising it, and also watching the reflection in the window. Betsy said when she read to him today, he was obviously paying attention.
Thank your for your prayers and healing thoughts.
February 25, 2003 7:45 PM--Just called Betsy and she said she had just sent me an update, so I'm posting her mail:
Ross was sleepy a lot today. But he played the hacky sack game eight times. I tried to do the twenty questions, but he was too tired. We did do the stimulation program and range of motion. The Threshold Choir came to sing today as they have every Tuesday this month. They make a point of including some of the songs I know so that I can sing along. They always include Down in the Valley which I used to sing to Ross when he was a baby and I have been singing it to him since he was hurt. I stood next to him, and he looked intently at me as we sang and then looked at the choir members. When Katie arrived, he was only interested in her.
He has been very congested today, but I think it is because they have a new kind of system for delivering moisture to his respiratory system. Also, tonight his eyes are the same size and seem to be focusing.
Betsy told me during our phone call that she had heard from the parent of another young man who has a brain injury, and she said it's normal for them to be exhausted after a really good day. So, we take each day and look for a better one tomorrow. Thank you, everyone, for your thoughts and prayers.
February 24, 2003 7:20 PM--Just got a terrific email from Betsy:
Today was great! Ross was alert and tracking, but the great thing is this new game with the hacky sack on his head. Ross caused it to roll off his head numerous times. I got it on tape, the aide saw it and he did it for the doctor at 5:00 PM. This is the first time he has been able to do something big for the doctor who usually arrives when Ross is tired or asleep. Thankfully, Ross had slept in the afternoon, had a refreshing shower, and though he was tired, he was ready.
In addition, when we did the 20 questions, Ross looked at the no with his eyes, but for the yes answers he tilted his head and raised his left hand. By the twentieth question, he was really tired, so he answered yes with a blink. Once again, it was something I had suggested in an offhand way, and he picked up on it.
Of course, after I read Betsy's email, I had to call her! It is such a good thing that Ross was able to show the doctor he understands and can follow instructions, because so far, he's usually too sleepy when the doctor finally get by his room.
Thank you for keeping Ross, his family and Katie in your thoughts and prayers.
February 23, 2003 7:40 PM--Just talked to Betsy. She said today they watched a video with Ross that our son Jon and his fiancée, Melanie, put together for Ross. They filmed his "old stomping grounds," from his first apartment in Boston to the place where their friend Adam works at the top of the John Hancock Building. Betsy said Ross watched quite a bit of it before falling asleep, but they'll play it again for him. She said it was really a neat tape. Another old friend from Ross's Empire Velo Racing days was there to visit today, too. Jesse and his fiancée Sara spent much of the afternoon with Ross. Visitors are really important to him and his parents encourage his friends to stop in when they can.
Betsy said Ross was sleepy today after his busy day yesterday, which is typical. Betsy has been tied up with business and hadn't seen Ross for the past two days. Rusty has been there with him, along with Katie. Betsy said she actually noticed a difference in him over even that short a period of time, and thought he looked better.
Thank you so much for your healing thoughts and prayers for Ross, his family and his fiancée.
February 22, 2003 8:25 PM--Another update from Betsy:
Update from Rusty since I worked at home today. Once again, Ross was slumped on his right side and very uncomfortable when Katie and Rusty arrived this morning. After the morning routine of repositioning, raising the head of the bed more, washing his face, and talking to him about the day, he was happier. I always think at this times, "What if we weren't here?"
In terms of functioning, Ross did well. We purchased a hacky sack (a small, soft knitted ball) yesterday. Today, Katie worked with Ross using the ball. She would place it on his head and ask him to make it fall off by tilting his head. Rusty said it took awhile, but Ross learned to tilt his head so the ball would fall. This movement is a small thing for a healthy person, but for Ross to learn to do it is progress and the sort of thing that shows intentional movement. Later, both Rusty and Katie tossed the ball in the air, tossed it at Ross, etc., and he tracked the ball intently with his eyes. They tried having him hold the ball and move it, but he wasn't able to do that yet.
He received a massage from our friend. He also received his second acupuncture treatment this week. Rusty said the acupuncturist was very pleased and Rusty thinks Ross may have been the most responsive ever. Ross moved his limbs and his head. When the needles were being placed in his feet, he actually looked at his feet and appeared to be focused on them.
Ross has a most amazing support group--his family, his fiancée, his many friends--and everyone who reads the daily updates and continues to pray for his recovery, to hold him in their thoughts and wish him well. Thank you so much for staying with him through this long recovery.
February 21, 2003 7:00 PM--Betsy sent me an email with tonight's update:
Dear All,
Today was my day off, so Rusty called me with the update. Ross was very distressed this morning. The nurses got him up into the recliner and Rusty took him down to a guitar concert that was being given on the unit. Ross became even more upset and started to sweat profusely. This is usually
a symptom of physical discomfort or emotional upset. Rusty thinks that Ross was upset because he was surrounded by patients who are all very injured or ill, and he realized how hurt he is This is the first time he has been with the other patients.
When Ross was put back in bed, he fell into a deep, restful sleep for a couple of hours. When he awoke, Rusty had him sitting up on the edge of the bed for 45 minutes, the longest time yet. He said Ross did very well, and when Rusty put Ross's head up, he held it there without letting it fall.
When Rusty called me, Ross was back in bed and still very alert and tracking.
Thank you for your prayers and support. Ross is working hard and progressing, and he has so far to go.
February 20, 2003 7:30 PM--I just spoke with Betsy. She said Ross had a really good day today, and it got better after acupuncture. She said he is always more alert following a treatment (the acupuncturist comes twice a week) and she notices him slowing down when he's gone a number of days between, but today she said Ross was so alert it was absolutely phenomenal.
Betsy has a board with the words YES and NO in color. She hasn't used it in awhile, instead relying on having Ross blink for his answers to questions. Today, though, she pulled out the Yes/No board and went through the regular series of twenty questions with Ross. She said it was obvious he was understanding and answering the questions...if he can develop and continue with this, it will be a huge step forward in convincing the doctors of his progress.
He's doing so much better every day. Thank you all for keeping him in your thoughts and prayers.
February 19, 2003 8:20 PM--Betsy said Ross had a good day today. They got him up on the side of the bed and he did well. She and Katie also took him up to the sixth floor, pushing his reclining chair (not a true wheelchair) to the upper floor which let him be out of doors a bit. Betsy said he appeared fascinated by the plants and the change from his hospital room.
Katie and Betsy met with one of Katie's law professor's who also has a son who has suffered a traumatic brain injury. Betsy said she told them of all the struggles they had gone through to get her son into rehab--at 27, Betsy said he is an impressive young man who is more than willing to help them with Ross.
Ariel, Ross's sister was there as well, today, and reported to Betsy that during Ross's bath, it sounded as if he said "Mom" again. As Betsy said, Ariel's a skeptic, so if she thinks she heard a word, it's most likely so!
Please remember Ross, his family and his fiancée in your thoughts and prayers. Thank you for keeping tabs on his recovery through the website.
February 18, 2003 7:30 PM--Just talked to Betsy. She said Ross had a good day--nothing really exciting other than the sense he is more alert with each passing day, more aware of the activities around him. He pays close attention to the nurse when she changes his feeding bag and such, and is constantly tracking and watching the activities in his room. Betsy said he didn't move his hands as much today, but he was very much involved in what was going on around him.
Thank you for your thoughts and prayers, for keeping Ross with you throughout the day. I am constantly amazed by the number of emails from those of you who follow this site on a regular basis and who pray for Ross, his fiancée and his family. When I first set this up, it was for Ross's close friends and family out of the Sonoma County area to keep track of his recovery. I had no idea how many of you from around the world would take his story into your lives. Thank you.
February 17, 2003 8:50 PM--Ross had a quiet day today, but Betsy said all went very well. He became more alert as the day progressed, and was very aware of a visitor who stopped by. Ross watched intently wherever Cody moved about the room. Betsy said they sat Ross up on the edge of the bed and he was able to hold his head up. When I talked to her just a bit ago, though, he was sleeping.
Please remember Ross in your thoughts and prayers, and if you're in the Berkeley area, please stop by and see him. He can have visitors at any time, and Betsy said he really responds to new people dropping by.
February 16, 2003 7:20 PM--I'm back and just received an email from Betsy that updates Ross's condition for yesterday and today:
Saturday was another good day for Ross. His acupuncture session was very good. Again, he moved his head and all four limbs with stimulation and commands. Ross's focus length is about four to six feet from his eyes. He follows with his eyes, moving his eyes to the left and moves his head.
In the evening, we sat Ross on the edge of the bed for practice in holding his torso and his head up. We had him sitting with his left hand extended and helping to stabilize his position. I was concerned because his hand was in a fist. I kept talking about trying to lift his arm, so that we could open up his hand, but his weight on the hand made it hard for me to move. Suddenly, Ross lifted his left arm, opened up his hand and put it down again. I am convinced that he lifted his arm and opened his hand because I was talking about it.
Later in the evening, Ross awoke from a nap and was moving his head: lifting it, turning it, moving his shoulders, bringing his head forward in ways we have not seen since he was hurt. He became very upset, crying and making sounds of fear or upset. We asked if he were in pain, and he did not blink "yes." We changed his position and reassured him and the upset passed.
This morning, he was alert and tracking for four hours. Rusty did the Sensory Regulation Program with him, and most of his responses were localized. Rusty also did the Rapport Scale again and Ross scored the highest yet. Ross is definitely making progress. His extremities are much more relaxed today also.
When I talked to Betsy tonight she sounded really excited. I think she's seeing even more improvement in Ross than she writes of in her very "conservative" emails! Thank you, everyone, for your healing thoughts and prayers for Ross. He is definitely showing improvement.
February 14, 2003 7:00 PM--Had kind of a crummy cell phone connection when I spoke with Betsy tonight so our conversation was brief, but she said Ross slept most of the day, his blood pressure was in a more normal range and his pulse around 53. When he was awake he was very alert and able to hold his head up when the nurses helped Rusty sit him on the edge of the bed. The Activity Director said Ross is really comprehending now. Betsy commented it's always nice when someone at the hospital notices how he's improving!
I have to be away for the weekend to attend a funeral, so there will not be an update tomorrow night. The next update will be on Sunday. Thank you for keeping Ross in your thoughts and prayers.
February 14, 2003 7:55 AM--I just received an emailed addendum from Betsy to last night's update:
Ross's blood pressure was up to 117/63 when I called at 9:30 last night. I did forget one thing about the acupuncture session in the update. For the first time, we saw Ross look at the source of the stimulus, the needle in his left foot. Onward and upward.
February 13, 2003 7:55 PM--Betsy said Ross had a pretty good day today, though his blood pressure was unusually low, at one point down to 99 over 47, then going even lower in the afternoon. He also appeared to be really sleepy. She's wondering if, by chance, whatever has been keeping his blood pressure fairly high has resolved itself and he can finally be taken off the drugs to control it. He was not given the medication this afternoon, considering his readings.
Ross also had a good acupuncture session, moving his head, focusing and tracking and moving both hands. Betsy also said that when she did range of motion exercises with him, Ross was able to push just a bit farther on each movement than he has in the past.
Baby steps, maybe...but consistent and always forward. Thank you for your healing thoughts and prayers for Ross.
February 12, 2003 7:15 PM--I just talked to Betsy. In her words, "Ross was awake and alert today, but I have the feeling he is a bit perturbed with the world." Understandable. I'm sure we all have days like that! He had a massage and is doing well. As Betsy said, "more of the same, but better."
Sometimes I'm frustrated there isn't more to write, and then I realize how far Ross has come, and how much he has healed...and how much more is still ahead in his recovery. Thank you, everyone, for being there, for your prayers and healing thoughts. You are all a very important part of this long and often painful process. I hope you'll be here when I can finally report there is no longer a need for Ross's website, that he is healthy and well, and fully recovered.
February 11, 2003 8:15 PM--Just talked to Betsy and she said Ross had a quiet day today, though she did say that when he was in the bed and also in a chair that keeps him in a reclining position, he lifted his head a full six inches off the pillow. He did this numerous times. He also brought his knees all the way up to his chest, something Betsy hasn't seen him do before. He appears very alert, and Betsy said it definitely looks like there is more and more "stuff" working together.
Thank you for remembering Ross in your thoughts and prayers.
February 10, 2003 7:30 PM--Well, the website is finally back up and I've got nothing to report! Betsy said Ross slept all day today, so I guess we'll expect great things tomorrow! Please remember him in your thoughts and prayers.
February 9, 2003 8:07 PM--The website is still down, but I've got a note from Betsy:
Ross had a good day. He was very sleepy when we arrived in the morning, but later was working very hard to move. When the acupuncturist arrived, he was tired. He did well, not as much movement as last week, but no coughing and no involuntary spasms in his legs. I am reminded of what a nurse said in Santa Rosa. Recovery is up and down, with the highs and lows becoming higher. Ross continues to follow us with his eyes, moving his head, communicating with one blink for yes. Last night a nurse told us that a few days before, when she was bathing Ross, she asked him if he wanted to sit in his chair afterward. She told him to blink once for yes, two for no. He blinked three. She asked the same question two more times, and he responded with two or more blinks each time. She then asked, "Do you want to stay in bed?" He then blinked once. Unfortunately, she did not write it in the chart.
As I am writing this at 7:00 PM, Ross has awakened from a nap and is practicing raising his hand with his index finger extended. He has raised it fourteen times so far, putting it down and relaxing it between each lift. He also moved his right arm up, which is very hard work, and then put it back down.
Hopefully the website will be up shortly and you'll be able to read the updates. Today was the Cherry Pie race in Napa. The sun was shining and it was a gorgeous day. So many people asked about Ross and said they were thinking of him. It was a wonderful reminder of how many people are praying for his recovery.
February 8, 2003 7:30 PM--Ross was sleepy today. Not much to report. The website is still down. Thank you, everyone, for your thoughts and prayers for Ross's recovery.
February 7, 2003 7:15 PM--The website is still down, so you may not see this update for a day or two. I am currently looking for another webhost. If anyone can suggest a company with reasonable rates that accepts more than one domain, please let me know at [email protected].
Betsy sent an email update:
I wasn't with Ross today; Katie and Rusty were and have the first hand experience. When Rusty arrived, he was scrunched up on his right side and uncomfortable. I frequently find him like this when I go in the morning. He does not like being on his right side for very long. Ross wanted to sleep this morning. He moved his head away from the wet wash cloth (usually he turns his head so we can wash his face.) He also apparently resisted the lemon swab in his mouth which he usually likes. He was toney in his legs. He did seem a little sore-I did some hamstring stretches that I had forgotten about yesterday.
Later, in the afternoon, when he woke up, he was alert. Rusty did the sensory regulation program and Ross did about the same as he has all week. When Rusty did range of motion, he felt Ross was letting him, Ross was more flexible and less toney in his legs. Rusty had him sitting on the side of
the bed for 30 minutes. Ross could not lift his head from the chest position, but he raised his eyebrows, trying to left his head. Katie said that when they lifted his head up, and centered him, he was able to maintain it in that position for up to three minutes. When his head dropped, he
didn't go into a fully head down position, but his head was 2/3 of the way down. Unfortunately, they were not able to video it.
I forgot Ross's tracking. He followed the blue ball, moving his eyes and his head to the right, 2/3 of the way to the left, then turned his head left, up and down. moving head and eyes.
Betsy
Thank you for your continuing support and for your prayers.
February 6, 2003 7:30 PM--Just talked to Betsy. She said today went really well. She commented that what struck her the most today was the realization how "there" Ross is. He's so much more aware of everything around him. He'll study shapes and such...the ribbing on her sweater, the tiles in the ceiling. It's almost as if you can see him processing the information. Even teh acupuncturist commented that Ross understands the instructions he gives and tries to do what is requested. Betsy said when she does range of motion exercises, she can feel Ross "helping" her, and Katie commented on the same thing. Katie got to the hospital this afternoon and was working on Ross's right arm, the one that is usually fairly stiff, and she said he was definitely trying to help.
Everyone working with Ross now equates the activity with training and exercise. Betsy said she tells him he is training for the biggest race he's ever done, and she believes the terminology makes a difference. Cognitively, Ross appears to understand more every day.
Thank you all for keeping Ross in your thoughts and prayers.
February 5, 2003 7:45 PM--Got an emailed update from Betsy tonight:
Ross had a good day. He continues to make more sounds-mostly when he is troubled with the secretions that collect in the area of the tracheostomy. When he was coughing tonight, he made a sound that sounded like "Ross" to both the nurse and me. He has been alert, tracking, and looking up, down and around the room. We have been able to complete the sensory regulation program given to us by OT (occupational therapy) three times today. We are also working on yes/no responses with Ross closing his eyes for yes. We listened to James Herriot's Animal Stories today. Ross has been very attentive. All of this, range of motion and two naps has filled the day.
Thank you for keeping Ross in your thoughts and prayers. He continues to improve every day.
February 4, 2003 7:30 PM--Betsy said Ross did really well today and was very alert. He appeared to be studying things around him, concentrating on the tiles in the ceiling, the windows and blinds and generally looking around the room very intently. We wondered if his vision might be improving, allowing him to see things more clearly.
Betsy said they started on the sensory stimulation program the physical therapist gave her to try with Ross. She was really surprised to discover he had much more localized responses than she had anticipated. Hopefully, this series of tests will provide the proof the therapists and doctors need to see Ross is improving and needs more therapy.
Some women from the Threshold Choir stopped by today. They come to the hospital and sing for Ross. Betsy said he was definitely interested and seemed to really focus on them.
His mouth is open more often, something Betsy said he only used to do while sleeping. He's moving his jaw and making more sounds. He's definitely doing better every day.
Please remember Ross in your thoughts and prayers. On another note, I would like to thank those of you who continue to post such nice notes to the guest book, or who write to me or the family privately. Your notes really mean a lot to all of us.
February 3, 2003 7:40 PM--I just talked to Betsy. Ross had a good day, though when she got to the hospital around 9:30 he was all scrunched up on his right side in the bed and looked very uncomfortable and sad. She said she went through their regular morning routine of opening the curtains, washing his face and making him comfortable in the bed, at which point he promptly fell asleep! He woke up at 11:00. Betsy said she sat him up in the bed and he was able to maintain his upright posture. He's improving daily at holding himself upright, turning his head and moving his neck, motions he couldn't do just a short time ago. He opens his mouth more and is making a lot more sounds. She said when she compares what he is able to do now to what he was doing just a month ago, there is a huge difference.
It's been eight months now, since Ross was first injured. This has been a long and difficult journey, with a lot more miles yet to travel. Thank you for remembering him, for keeping Ross, his family and fiancée Katie, in your thoughts and prayers.
February 2, 2003 7:10 PM--Betsy just emailed an update:
Ross did well today. His feeding tube was replaced this morning because the old one was clogged. We are still working on a way to get yes or no responses. If we say, close your eyes, he will do it. However, we are still
not sure when we say, "If the ball is blue, close your eyes," that he is closing his eyes because we asked him to, or because the ball is blue. This week we will working on this question.
Ross worked beautifully today with the acupuncturist; he followed commands, was able to do many things more easily than before: tracking, looking at the localized source of pain, moving his head, moving his limbs.
We are very blessed to have such a fine acupuncturist who gives such positive feedback to Ross.
The healing process is so slow, but in looking back over the last few months, we definitely see positive and momentous improvements in Ross's alertness, his responsiveness, and his physical condition.
Tomorrow will be the 8th month since Ross's accident on June 3. He really has come a long way, especially when you realize he was not expected to survive, and then not only had to undergo so many serious surgeries, but also the septic shock infection that was such a serious setback. He truly is a fighter, but he has an amazing team of supporters behind him. Thank you all, so much.
February 1, 2003--Received an email update from Betsy:
Ross did well today. The night nurse said that he only slept two hours last night, so we tried to keep him awake. Rusty did extensive range of motion and we sat Ross upright in the bed. He was very alert and tracking well. He held his head up pretty well and kept his torso pretty straight. We are pressing him to make more sounds. He is definitely sad; we are talking to him about it, and are trying to help him put some of that energy into anger. Very close friends who hadn't seen him for two weeks visited today and commented that he was obviously trying to communicate.
Betsy explained to me earlier she had learned Ross's sleep patterns could be a sign of depression, as he becomes more alert and awake, and aware of his physical limitations. They are hoping to push him harder, to turn the sadness into anger at his situation in the hope it will force him to try even harder. It's really difficult for them, but so important to Ross's recovery. Please keep all the family, as well as Katie and her family, in your thoughts and prayers.
January 31, 2003 7:30 PM--Rusty said Ross appeared upset but very alert today. He spent a lot of time working with him, doing range of motion exercises. Katie's mom, Sally Meyers was there as well and helped Ross to sit up on the side of the bed. He's able to hold his head up on his own, now, something he couldn't do just a few weeks ago.
Physical therapy is making up a list of twenty different things to do to work with Ross that need to be done five times a day, but only when he is fully awake and alert. Most of the tasks are speech therapy and different things to help document Ross's improvements.
One thing Rusty reported--he was doing range of motion exercises on Ross's leg, which really seems to hurt him, but has to be done. Rusty told Ross he was going to keep doing it until Ross groaned to let him know to stop. Ross groaned. This happened on two separate occasions, so he knows it wasn't just coincidence.
Betsy said Ross is obviously very aware of what is being said to him. He's following commands and watches when people talk. We're still waiting for more words! Thank you, everyone, for your continued support and for your thoughts and prayers.
January 30, 2003 7:10 PM--Nothing as exciting today as yesterday, but Betsy said Ross had a good day, and an excellent session with the acupuncturist. He's very responsive when the doctor treats him, and definitely aware of the needles. He is sleeping a lot during the day, so Betsy has asked the nurses to check him during the night to see if he's awake then. He's making more sounds, holding his head up and also holding his torso up. Thank you for your thoughts and prayers, and also, thank you everyone for your wonderful notes sent privately and to the guestbook. I copy all of them for Ross.
January 29, 2003 5:20 PM--Betsy just told me Ross said his first really clear word today. He was clearly frustrated and uncomfortable after having his trach suctioned and changed and trying to cough--Betsy said he mouthed the expletive "Shit," but said it loud enough she could hear it, and then he promptly fell asleep. J As one friend said, I 'm sure most cyclists have said the same under less difficult circumstances! In technical terms: It means he has injury to his frontal lobe which is ok but the good news is that his left fronto-temporal Broca's area is working.
On the down side, Betsy finally got the definitive answer from Physical Therapy about why Ross no longer gets therapy and why there is no tilt table trial, even though one was ordered by a physician. Ross is getting only maintenance, not skilled therapy. They've decided he's not getting better. The fact that no one comes in to observe or take note of the daily improvements noted by his acupuncturist, family or the nurses obviously doesn't count.
It is getting harder and harder to listen to the powers that be who act as if Ross is not improving, especially when it is so obvious to everyone who spends time with him that he is. Thank you so much for your prayers and for keeping Ross in your thoughts throughout each day.
January 28, 2003 8:00 PM--Just talked to Betsy. She said she was in Ross's room at Herrick and they had the TV on. He was watching Seinfeld, a show he used to really like. Betsy said he definitely appeared to be paying attention to the program.
The physical therapist didn't show up today as expected, though, as Betsy said, there has never been an official schedule for therapy. She sounds so frustrated when I talk to her. Few of the things she has been told would happen to help Ross have occurred. I know it just makes her nuts. We talked a bit about becoming proactive when our children are involved. I doubt there is a mom out there who can't find a stronger will and a more powerful voice if it means helping her child.
Please remember Ross in your thoughts and prayers, and especially remember the people who love and care for him. They are fighting a battle not just to get Ross well, but to force the system to help, not hinder his recovery. It's an uphill battle and it shouldn't have to be.
January 27, 2003 8:00 PM--Betsy said Ross had a quiet day today, but he was very alert. She suspects he is having more trouble with double vision, though it's difficult to be certain. He's definitely making more noises--groans, moans, etc.
There is an article in today's Oakland Tribune about Katie and Ross. The link is: http://www.oaklandtribune.com/Stories/0,1413,82~1804~1139764,00.html#
Please remember Ross, his fiancée and their families in your thoughts and prayers.
January 26, 2003 8:00 PM--Just a brief message tonight--Betsy said Ross slept until the acupuncturist arrived, then responded very well to the treatment. He was moving his head to the left, which has been difficult for him, and is showing equal response now in both sides. After the acupuncturist left, when Katie was standing close by Ross, his eyes were moving to follow her and he was crying.Betsy and I talked about the fact he is probably becoming more aware that something is terribly wrong. I know this has to be so hard for his mom and dad, and especially for Katie. Please remember them in your thoughts and prayers. Ross's family and fiancée really need your strength and encouragement.
January 25, 2003 8:00 PM--Ross got a massage today and the masseuse said his legs appeared to be softer, not so tense. He did not receive any physical therapy last week through the hospital (the masseuse is a family friend who comes in) but hopefully the physical therapist will be in next week. It's been very frustrating, especially since it means Rusty, Betsy and Katie have to do all the range of motion exercises for him themselves. He's also not yet gotten the wheelchair that was promised, which means he is still confined to the hospital room. He's sleeping soundly tonight, though Betsy said he has been sweating a lot the past few days, which can be a sign he is experiencing physical discomfort, though he also perspires heavily when he's working hard in therapy and trying to respond to commands.
Please keep Ross and his family and fiancee in your thoughts and prayers. If you're in the East Bay, look for the Monday edition of the Oakland Tribune, as Betsy said there should be an article about Ross in that issue of the paper.
January 24, 2003 10:00 PM--This update will not go up until Saturday, as my local server is experiencing problems. I got my update from Ross's dad tonight. Rusty said Ross had a good day, though he's concerned that Ross's legs are getting tight and the tendons are beginning to shorten. Rusty said they got him up on the side of the bed and were able to do range of motion exercises and also get his feet on the floor, which helps. A tilt table would really help, but so far they have been unable to get one authorized by the hospital.
Katie was there early this morning, before Rusty, and working with Ross with a blue ball they have that's about the size of a softball. She puts it on different areas of the bed, and Ross looks for it, moving his eyes as well as turning his head. He's beginning to move more to the left, a direction that has been difficult for him since being injured. Katie also said that when she tossed the ball toward Ross, he raised his right arm in response, whether as a defensive motion or to try and catch it, she wasn't sure. Ross is also very aware when people are in his room and moving about the room. He follows them with his eyes, often turning his head.
Rusty said he's also in motion a lot, as if he's working out, stretching his muscles and grunting. At Katie's suggestion, they refer to all the physical therapy they do with him as "exercise," since, as a cyclist, that's something he's obviously programmed for. It appears to be working.
Thank you for keeping Ross in your thoughts and prayers. He is showing so much improvement, but he still has a long way to go.
January 23, 2003 7:45 PM--Not much to report tonight. Ross slept most of the day. The trach was changed this morning, which is a fairly traumatic procedure for him, but Betsy said it was necessary. His breathing this morning was quite labored and when Ross was asked to make a sound if he was in pain, or if his chest hurt from breathing, he responded with a groan.
As Betsy said at the end of our conversation, hopefully tomorrow will be better. Please keep Ross, his fiancée and his family in your thoughts and prayers.
January 22, 2003 7:35 PM--Just a brief update tonight to let you know that Ross is definitely focusing on whoever is speaking now, he's tracking well with his eyes, and other than some irritation with the deflated trach balloon (which should be corrected soon) he is doing really well. Today Betsy and Katie "played ball" with him, holding the ball in his hands and tossing it. He is showing more response to things every day.
Thank you for keeping him in your thoughts and prayers. Things are definitely looking better every day.
January 21, 2003 7:40 PM--Had an email from Betsy a few minutes ago. She wrote:
Ross had lot of respiratory secretions that he was trying to get out. Although the mucus was thick, it was white. This may be related to the trach needing to be changed, which can't be done until Thursday when the doctor is here. We worked with the yes/no board, this time with the yes at the top and the no at the bottom. He seems to be better able to work with it vertically. Katie and I again tossed the ball across the bed so he can get more practice tracking to the left and hopefully move his head to the left more. He has been awake a lot over the last two days. He did not sleep more than two hours during the day Monday or Tuesday.
I also talked to Betsy, and the one thing she emphasized is how far Ross has come since he was at Kentfield. In the months since his surgery, in spite of the setbacks with infection and all, he is still much farther along than he's been at any time since the accident. Thank you all for keeping Ross in your thoughts and prayers. I really believe it's not the one big miracle, but the many little ones that will bring him back.
January 20, 2003 8:00 PM--Just had a brief conversation with Betsy. Ross was awake most of today but is tired tonight. She said he is tracking really well. She and Katie tried tossing a bright blue ball back and forth across the bed, and Ross followed the movement. They used the "yes/no" board for questions, but his answers are still not consistent. Betsy did say Ross was definitely aware Katie was back (she was away for a few days) and really tends to watch her wherever she is in the room. Betsy said, for instance, the acupuncturist was trying to get Ross to look to the left, but since Katie was on his right, that's the only direction he would look!
Thank you for keeping Ross in your thoughts and prayers. And please, if you don't mind, pass the word the website is back up and running. We're hoping this is the last of the problems and it will remain functional.
January 19, 2003 7:30 PM--The website should be back up late tonight or early Monday morning, so will get everything posted asap. I just received the following email from Betsy:
Ross is resting. He had a good session with the acupuncturist. His vital signs are a little higher this afternoon, but he has not been sweating heavily as he was the last two days. He is tracking and responsive. Friends visited today who had not seen him since October and they were surprised at how much better he was doing.
I apologize for the inconvenience with my disappearing website. Please keep Ross in your thoughts and prayers. His improvement now is noticeable, day by day, though the process of healing is very slow. Thank you so much for thinking of him.
January 18, 2003 9:30 PM--My website is still down but I'll continue to update and will post the information once the website is up and working. The server is located in Oklahoma, and I have a feeling the bad weather there is creating the problems.
There was no update on the 17th as we were out of town. Tonight, however, I had a phone call from Betsy and she said Ross had a really good day, he was very alert and obviously aware of the people who were there.
She said he was working hard to follow commands and tracking really well. In Betsy's words, "It's really wonderful."
Thank you so much for keeping Ross, his fiancée and his family in your thoughts and prayers.
January 16, 2003 7:30 PM--If this update shows up late, it's because the site was inaccessible again. I'm really having problems with my host, but keep thinking it will get better! In the meantime, I've just gotten a note from Betsy:
Ross was very alert today. I did tracking with the mirror with him; he moved his eyes from right to left and up. He moved his eyes downward briefly. However, with the acupuncturist he moved his eyes right to left, up and definitely down, even tilting his head down to see. His response to commands was immediate, even though occasionally he couldn't do exactly what was asked, we could see him trying. He moved all four limbs and his head from side to side as well as down. We are so indebted to the acupuncturist; Ross really responds to him.
We continue to work on following commands ourselves, but Ross is more consistent with the acupuncturist than with us. We are also developing a list of simple questions with which to answer yes/no. I am also working on identification of people in pictures, but that requires more complexity. I did think today that I saw some progress. After his bath at 7:00, Ross is sleeping peacefully and relaxed.
Please continue to remember Ross, his fiancée and his family in your thoughts and prayers. His progress is slow but consistent, and your support is so important. Thank you.
January 15, 2003 7:30 PM--Got an email from Betsy tonight:
Ross was very alert in the morning. He tracked with a mirror to the right, left, up and down. He seemed to answer some simple questions about people in pictures by looking at the yes/no board. He also closed his eyes on command. The respiratory therapist said she has to get permission to do the Passy-Muir trials daily.
When I left at 2:00 P.M., Ross was sleeping peacefully and very relaxed. When he was weighed on Monday evening, he weighed 159.6. The dietitian has now reduced the flow rate on the feeding, since they don't want him to gain much more.
Betsy was heading back down to Berkeley this evening, so if I hear from her again, I'll add more to the update. In the meantime, I want to thank all of you for your continued prayers and healing thoughts for Ross. His support group is absolutely amazing!
**Just talked briefly to Betsy and she said Ross was sleeping in his recliner now, but he's very relaxed, his muscles are not at all tight. He's moving his right foot, another sign that there is no spinal damage. He also moves his left, though not quite as much.
January 14, 2003 7:20 PM--Just talked to Betsy and she said Ross was asleep in his recliner, but that when he was awake today he was very alert. Both the physical therapist and speech therapist spent time working with him today. The speech therapist was there mostly for evaluation today. Ross also had a half hour of Passy-Muir Trach time...this will be an ongoing process until Ross can breathe on his own.
Betsy's still trying to get a wheelchair authorized for him. Everything is such a frustrating, slow process.
Thank you, all, for keeping Ross, his family and Katie in your thoughts and prayers.
January 13, 2003 7:10 PM--Here's Betsy's update for the day:
Ross is sleeping, looks peaceful. I awakened him for the Passy-Muir Tracheostomy Trial. (RT deflated the trach balloon, put special cap on the trach tube, air now goes past vocal cords up into back of throat so Ross can make sounds.) Ross handled this well - 99% saturation rate. After 2 hours, his breathing became labored and the saturation rate dropped. Good start. We will try again tomorrow.
Ross made sounds and seemed to be trying to say "ma" several times. Ross slept most of time. Range of motion afterwards-Ross continued to sleep for part of it, but was toney. (Muscles tense) Ross slept a lot today and was relaxed; he does not seem tired and sore like over the weekend. I did some picture IDs with blinking in the morning. I gently massaged his head throughout the day as the acupuncturist instructed.
Thank you for keeping Ross and his family as well as Katie in your thoughts and prayers.
January 12, 2003 9:40 PM--Just got an emailed update from Betsy, so will post it:
Ross slept most of the day. He had acupuncture in the early afternoon. Since Ross was tired, the doctor did not give him as intense a session in order to encourage the deep rest. He was concerned that Ross might have been battling a low grade infection. The acupuncturist pointed out that Ross was moving all four limbs on command, which means that he probably does not have severe spinal cord damage. Ross is also demonstrating some cross over from needle stimulation on one side of the scalp to the opposite side in the
body. Ross got range of motion. He was much more comfortable after a shower and massage from the nurse's aide, and was more alert, tracking and trying to make sounds.
Please remember Ross as you go about your day. He needs your thoughts and prayers now, more than ever, as he struggles to recover.
January 11, 2003 8:00 PM--Talked to Betsy tonight. She said Ross seems very sad, and today he was uncomfortable, as well, and also running a low grade fever. When Andrew arrived in the morning he felt that Ross was in an awkward position on the bed, and that might have accounted for some of his discomfort. He's still not able to move himself, though Andrew said Ross did push against him with his leg during range of motion exercises today.
He got a massage today. The masseuse said he responded as if his muscles were "achy." The aide came in and gave him a shower. Betsy said he was sleeping peacefully this evening, though he was definitely alert throughout the day.
Thank you for keeping Ross, his family and Katie in your thoughts and prayers. Most likely the sadness is a sign he is becoming more self-aware and knows that something is terribly wrong. As his mom said, he is definitely in the biggest training endeavor of his life, and it's something he really can't do all alone.
January 10, 2003 7:50 PM--Just got an emailed update from Betsy.
Ross seems tired and sad today. He was tracking, but more subdued. He had range of motion and the physical therapist showed Rusty and Andrew how to work his shoulders. The physical therapist had him sitting on the side of the bed and working on the righting reflex, the reflexive tendency of the body to right itself when we start to lose our balance. He then sat in the chair for an hour. He is currently getting physical therapy two half hour sessions a week. The physical therapist thinks he is ready for tilt table work to strengthen his lower extremities.
Please pray for Ross. As he is more and more alert, he is surely aware that he has to work very, very hard. And pray for us as we try to encourage him in the biggest training endeavor of his life. Thank you all for your support. The response to my request about research was wonderful.
As a side note, a friend who is a doctor familiar with head trauma sent us an interesting note tonight that might explain Ross's sadness. He wrote: When teenagers come out of coma, they usually go thru an agitated phase. Ross, as an adult, will go thru the depressed self awareness phase. Just as you noted.
January 9, 2003 8:50 PM--I apologize for the late update, and also if things look a bit different. My computer "hiccupped" today and I lost the website back to August 24, so have spent the evening rebuilding it.
I talked to Betsy a couple of hours ago and she said Ross had a good day, though he still appeared tired. His social worker came by to see him, though, and commented on how alert he appeared and how well he was tracking.
Andrew did range of motion exercises with him, and both Betsy and Andrew managed to get Ross up sitting on the side of the bed for awhile. The acupuncturist was by and commented on how responsive Ross appears and said he was delighted with his progress and how well he is obeying commands.
Betsy said the big hurdle at this point is for Ross to be able to raise his head every time he sits up. He can do it sometimes, but he's not consistent. However, his vitals are good and Betsy said it's obvious he's showing progress every day.
Thank you, everyone, for your kind notes, your healing thoughts and your prayers.
January 8, 2003 7:45 PM--Just got an email from Betsy with today's update, so will use her words:
Ross had a good day. He still seemed somewhat tired this morning, but became more alert after Andrew did range of motion. We are working on communicating by use of a yes-no answer board. Yesterday and this morning, he seemed only interested in looking at the no side. However, this evening he seemed to answer Betsy's question about listening to another installment of Lord of the Rings by looking at the yes side. He was very alert as he listened to 1 1/2 discs of the book. Today was the third day that I put a paper coffee cup in his hand. The first day his fingers were straight on the cup. This morning, his fingers curved around the cup. He had physical therapy today and the therapists had him sitting on the edge of the bed. He was able to raise his head when he yawned, but he did not raise it on his own as he did last week. He did hold his head in the neutral position and he did hold his trunk by himself against a big ball at his back without any other support. He also is getting weight bearing exercise at these times because his feet are on the floor and his hips are supporting his weight. He continues to track us and he watched Andrew a lot today. At 7:00 P.M. he is sound asleep, his arms and hands relaxed, and his head turned slightly to the left (when he is tense and contracted he wants to turn his head to the right, although the most interesting part of the room is on the right.
I also talked to Betsy on the phone for awhile tonight, and she asked me to put out a request to any of you who might be familiar with books, studies, etc. that might help her become more informed about possible treatments for Ross. Or, if you have the time, to do some searching on the Internet for info that might help. You can reach Ross's mom at TrntyRest@aol.com if you have any information that might help Ross. Of particular interest would be any current studies trying new treatments for traumatic brain injury patients.
Thank you, everyone, for your continued support, for your healing thoughts and prayers for Ross and those closest to him.
January 7, 2003 7:15 PM--Ross had another quiet day. Betsy said he appeared tired and slept a lot, but when I talked with her he was sitting up in a chair and moving his left arm while Andrew worked with him. Betsy said the doctor has increased his dosage of Bromocriptine, which is a brain stimulant described online as "an ergot alkaloid dopamine receptor agonist. It is a strong D2 receptor agonist and a weak DI receptor antagonist. It stimulates both pre- and post-synaptic receptors." Side effects include nausea, which might be the reason Ross hasn't appeared to be feeling well for the past couple days.
Betsy did say his vital signs are excellent, however, and though he appears subdued, he is responsive and tracking well.
Today the Threshold Choir came to Ross's room to sing. This was not their first visit, but today they were accompanied by a reporter and photographer from the Marin Independent Journal. The paper is doing a story on the choir and told Betsy they would include a side story about Ross. She doesn't know the projected publication date.
*Posted 1/8--11:40 a.m. I apologize if this update is posted late. I've been unable to access the website. Thank you for remembering Ross, his fiancée and his family in your thoughts and prayers.
January 6, 2003 8:00 PM--Ross had a typical "quiet day after a good day," which means he was tired but awake most of the day after so much activity yesterday. Betsy said he was very alert, though quieter. Andrew is still here and Betsy said he is absolutely amazing in the way he works with Ross. Ross's vital signs are good. He has had some visitors, which Betsy and Rusty really appreciate. It's good for Ross to have his friends coming by.
Thank you so much for remembering Ross in your thoughts and prayers.
January 5, 2003 8:50 PM--Just got a note from Betsy: Today was another good day for Ross. He was very alert and followed us around the room with his eyes and even moved his head to follow us, both sideways and down. Today was different because he did this all day, not just for a short time. The acupuncturist was very pleased with Ross's responses today. He said Ross was making many voluntary movements. Ross was sitting up in bed, and lifted his head upright a couple of times and held it there.
Andrew came back today, and as usual did range of motion with Ross. Ross's vital signs at the end of the day were very good. At the end of the day, he is tired, but still looking at pictures hanging around his bed.
Thank you so much for keeping Ross in your thoughts and prayers. Lately, it appears his recovery is moving at an even faster pace. I have to believe the energy and prayers from the many wonderful people following his story has a definite effect on his health. Thank you.
January 4, 2003 8:20 PM--Will continue to use Betsy's emails, as they're much more specific than mine: Today was a rest day from acupuncture and physical therapy. Ross was tracking the chicken again this morning, and moving his eyes down and also slightly moving his head in order to keep following the beanie chicken. Ross bent his left elbow upon request. After a nap, he spent a lot of time looking at mobiles and pictures hanging near the bed. He spent a lot of time looking at the picture of Katie and him that is now on the ceiling. He seemed very attentive as we finished listening to Lance Armstong's book on tape. Ross also moved his right leg and foot more today. The movement seemed like stretching and contracting. Katie worked with Ross on lifting his left hand-she would say "hi" and wave. Ross raised his hand three times when she asked, taking about 60 seconds the first time, and about 20 seconds the third time. Twice he didn't lift his hand, but moved it. He really watched Katie as she talked to him. After Katie left, and Betsy talked to him and they listened to the book, he raised his left hand again on his own, over and over, at least ten times. Rusty did range of motion and Ross fell asleep.
When I asked Betsy about Ross's repetition of the motion with his left hand, she agreed that it seemed as if he were "working it." I keep thinking that his cyclist's training and dedication to the sport is helping him in his recovery. Thank you for keeping Ross in your thoughts and prayers. It's so exciting now, to see him making so much progress.
January 3, 2003 8:15 PM--Betsy emailed the update tonight, so I'll put the update in her words: Ross was alert in the morning and was able to track Rusty with his eyes as Rusty moved around the bed. It is still hard for Ross to move his eyes to the left, but he is doing it. Ross was more toney today in his limbs, a day after hard work pattern that we are noticing. After range of motion with Ross's left arm, Rusty asked him to move his left arm. Ross's arm was extended and he bent his left elbow about 5 degrees. He did this on command three times, and each time it took 30-60 seconds to respond.
Rusty and Katie played one of Ross's favorite music CDs at loud, not booming, level and Ross's expression indicated that he recognized it and was interested. Ross slept soundly for 3-4 hours in the afternoon. In the evening, Ross was able to follow with his eyes the little beanie chicken that friends had given him as Rusty moved it down, and Ross tilted his head slightly to keep the object in sight. Ross sat in his chair after his bath. The nurses sat him upright in the chair, just slightly reclined. This is very hard work and requires Ross to use his trunk muscles to hold himself upright-Ross has to be constantly working to keep from falling over. Also, with his feet flat on the floor, he has to pump blood back up to his heart. The color in his feet and legs was improved in comparison to earlier in the week when he first started sitting upright in the chair . When Rusty moved the chair into the reclining position, the color of his feet dramatically improved. A very good response for someone who has been in bed and not up at all for over four months. Ross was able to cough to clear his bronchial tubes and for the third day did not need to be suctioned while we were there.
Thank you for remembering Ross, Katie and their families in your thoughts and prayers.
January 2, 2003 6:00 PM--I just talked to Betsy. She was at the hospital with Katie. Ross had a pretty busy day. His dad worked with him this morning, he had acupuncture and then physical therapy. He spent time sitting in a chair and Betsy said he's able to hold his head up for brief periods of time. The occupational therapist is checking into getting a wheelchair for him, which would at least allow his family to get him out of the hospital room for a change of scenery. Betsy said he is improving daily, something even the nursing staff has noticed.
It will be seven months tomorrow since Ross was injured. In some ways, it seems such a long time, but in others, the months have gone by very quickly. His improvement is slow but steady and we're all hoping for great things in the new year. Thank you so much for keeping Ross and his family and fiancee in your thoughts and prayers. You can't possibly imagine how much your unwavering support has meant to everyone.
January 1, 2003--Betsy said Ross seemed awfully tired today, but after the busy day he had yesterday, it makes sense. Vital signs are good, but Betsy said he appeared uncomfortable. They were just helping him to sit up when I called, though, and he was doing fine.
Thank you for keeping Ross in your thoughts and prayers.