December 2003 to June 3, 2004
More senseless deaths and horrible injuries~~
Our thoughts and prayers go out to the families of Alan Liu and Jill Mason. Alan was killed and Jill severely injured while the two were riding their bikes on Highway 12 Easter Sunday morning. The driver of the vehicle who struck them was already drunk at 11:20 in the morning when the incident occurred, according to the Highway Patrol. Read an excellent article about the accident and Alan and Jill in the San Francisco Chronicle.
To follow Jill's recovery, go to www.jillmason.com
It just keeps getting worse. Another cyclist Daniel O'Reilly of Sonoma,has been killed in Sonoma County, the victim of a possible DUI.
Update: Both drivers entered guilty pleas in the above accidents.
Ross's sister Ariel had the following letter in the May 3, 2004 Press Democrat online:
May 4, 2004
Dear Editor
I was extremely disappointed in the naivete of a fellow reader's letter to the editor in the paper. The individual wrote, "There are many roads that are wide, straight stretches with bike lanes. This is where bicyclists have better odds of surviving their bicycling experience." Cyclists have no better chance of surviving on wide, straight stretches with bike lanes than they do anywhere else. In fact, it was on such a cycling safe rode that my brother was hit and tragically injured by an unimpaired, but simply inattentive and bad driver. I would even argue that cyclists have a better chance of surviving being hit on a narrow, curvy road assuming the driver has his own best interest in mind and is driving more slowly and carefully so as to avoid hurting himself. The problem with the issue of cyclists and drivers sharing the road is driver's attitudes. Being a driver myself, I understand how easy it is to treat driving as something as menial as brushing my teeth; however, this simple, lazy attitude leads to death and injury. It's time drivers stop sympathizing with those who hit cyclists, thinking "it could happen to me." Its time drivers start realizing that being hit while cycling, walking, or running could happen to them or their family. Are we really justifying killing because we're too lazy and self-interested to take responsibility for our actions?
Ariel Dillon
Glen Ellen
Ross's first laughter since his accident: December 7, 2003
First trip to the Tuesday night crits: May 18, 2004
Betsy, Ross and Jeremiah
Ross was a Cat 2 racer, training to become a Cat 1 at the time of his accident. He used to race with a lot of the cyclists in the photo below. Everyone who knows Ross seemed really pleased to see him at the crits. It was very special.
If anyone has one of the original old Atari games you'd be willing to donate, please contact Ross's mom at TrntyRest@cds1.net A newer version of the game was donated, but the controls are much stiffer than the old style, and Ross is unable to manipulate them. Thanks!
More senseless deaths and horrible injuries~~
Our thoughts and prayers go out to the families of Alan Liu and Jill Mason. Alan was killed and Jill severely injured while the two were riding their bikes on Highway 12 Easter Sunday morning. The driver of the vehicle who struck them was already drunk at 11:20 in the morning when the incident occurred, according to the Highway Patrol. Read an excellent article about the accident and Alan and Jill in the San Francisco Chronicle.
To follow Jill's recovery, go to www.jillmason.com
It just keeps getting worse. Another cyclist Daniel O'Reilly of Sonoma,has been killed in Sonoma County, the victim of a possible DUI.
Update: Both drivers entered guilty pleas in the above accidents.
Ross's sister Ariel had the following letter in the May 3, 2004 Press Democrat online:
May 4, 2004
Dear Editor
I was extremely disappointed in the naivete of a fellow reader's letter to the editor in the paper. The individual wrote, "There are many roads that are wide, straight stretches with bike lanes. This is where bicyclists have better odds of surviving their bicycling experience." Cyclists have no better chance of surviving on wide, straight stretches with bike lanes than they do anywhere else. In fact, it was on such a cycling safe rode that my brother was hit and tragically injured by an unimpaired, but simply inattentive and bad driver. I would even argue that cyclists have a better chance of surviving being hit on a narrow, curvy road assuming the driver has his own best interest in mind and is driving more slowly and carefully so as to avoid hurting himself. The problem with the issue of cyclists and drivers sharing the road is driver's attitudes. Being a driver myself, I understand how easy it is to treat driving as something as menial as brushing my teeth; however, this simple, lazy attitude leads to death and injury. It's time drivers stop sympathizing with those who hit cyclists, thinking "it could happen to me." Its time drivers start realizing that being hit while cycling, walking, or running could happen to them or their family. Are we really justifying killing because we're too lazy and self-interested to take responsibility for our actions?
Ariel Dillon
Glen Ellen
Ross's first laughter since his accident: December 7, 2003
First trip to the Tuesday night crits: May 18, 2004
Betsy, Ross and Jeremiah
Ross was a Cat 2 racer, training to become a Cat 1 at the time of his accident. He used to race with a lot of the cyclists in the photo below. Everyone who knows Ross seemed really pleased to see him at the crits. It was very special.
If anyone has one of the original old Atari games you'd be willing to donate, please contact Ross's mom at TrntyRest@cds1.net A newer version of the game was donated, but the controls are much stiffer than the old style, and Ross is unable to manipulate them. Thanks!
June 3, 2004--The following letter is from Ross's parents, Betsy and Rusty Dillon:
Two years ago, on June 3, 2002, our lives were turned upside down when a car ran down our son Ross while he was riding his bicycle. Ross has blessed our lives for twenty-seven years. The first twenty-five years he blessed us with a quick mind, a happy smile and a loving nature. In the last two years, he has shown us perseverance, hard work, an indomitable spirit and a deep reservoir of patience in the face of horrific obstacles.
From the beginning, all of you—family, old friends, new friends—have been a rock of support and encouragement for all of us: Ross, our family and Katie. There were many days when your supportive messages were the emotional balm we used to endure another day of heartache and despair. You have provided material things that our therapists thought would help and you have sent donations that have provided for the many hours of therapy and care givers. Ross is still a total care patient and requires constant help and attention. The journey is not over. The good news is that Ross is making steady progress each day, and we believe he will recover more and more function over time. Please hang in there with us. Please continue to pray for Ross. While this journey is heartbreaking, it is also a privilege.
Rusty and Betsy Dillon
Ross’s proud parents
June 2, 2004 9:00 PM--I called Betsy tonight for the regular update. Ross had a good day, though he's been more tired than usual. It could be the drugs, or it could be one of his plateaus where he is getting ready for a jump in abilities. We obviously are all hoping for the latter. Anyway, while I was talking to Ross's mom, I couldn't help but think of Ross as he was two years ago tonight. He'd graduated cum laude from Santa Clara University, he'd been accepted to Boston School of Law, he was due to marry Katie in a few weeks...life couldn't have looked better to this exceptionally talented and handsome young man. All of that changed in a heartbeat--a moment of inattention by a driver, a bit of fate that put Ross on his bicycle on that particular stretch of road near Occidental on a beautiful June day.
More than just Ross's life changed that day. His parents, his sisters, his friends, his fiancée, his co-workers...all the people who interacted with Ross Dillon on a regular basis, who knew this funny, smart, athletic, wonderfully witty guy, suddenly found themselves caught between mourning his loss and celebrating the fact he was still alive.
Now, two years later, he is not only alive, he's proving the doctors who predicted he wouldn't last the night on June 3, 2002, that he's made of pretty tough stuff. He's regaining more of himself every day, though sometimes his improvements are so small, so minimal, that it's difficult for those of us who don't witness his amazing stuggle on a daily basis to realize just how very much he has gained. It only takes a minute to go back on this site and read what he was doing a few months ago, a year ago, to realize Ross has never lost his determination, his will to survive, his competitive spirit.
Obviously, he hasn't made this progress on his own. Ross has an amazing family willing to fight every step of the way to see him once more as the young man he was, people who would never even consider giving up this arduous struggle. He has caretakers who obviously love him and want his success, he has medical professionals who have offered support and information outside of the traditional medical community, and he has all of you, the folks who knew him before his accident and want the young man who was so special to come back into their lives, or those of you who have found him online and only know him through his daily updates. Your prayers give Ross and his loved ones strength, your notes of support and your healing thoughts are part of the powerful effort going into Ross's recovery.
I can't believe it's been two years since Ross was first injured. I can still remember his dad's phone call to us, late at night, telling us how badly Ross was hurt. I don't think any of us believed Ross would make it through the night. Thank goodness we were wrong.
June 1, 2004 9:45 PM--Ross had a long day. Busy and very tiring, but Rusty said it was still a good day and a lot was accomplished, including time with the acupuncturist. Ross's doctors are currently increasing his Keppra (anti-seizure meds) for a few weeks while he's still on the Tegratol, and then intend to reduce the Tegratol before removing it altogether, so Ross will probably feel fairly sedated during the period where the dosages are over-riding one another. Hopefully, he'll be off the Tegratol in a few weeks and the dosage of Keppra will be reduced to a comfortable level for him. So much of his recovery is based on the balance of the medications that determine his brain activity--because of his injuries, Ross is prone to seizures, but the seizure medications tend to sedate him to the point where progress becomes very difficult. Hopefully, removing the Tegratol and limiting him to the Keppra will control Ross's seizures and still leave him alert enough to work on his therapy. Please keep Ross in your thoughts and prayers. Changing meds is always a tricky proposition, and he does respond to your healing thoughts. Believe me...in the almost two years I've been doing Ross's website, I've seen things occur I never would have believed possible, and it's because of all of you, your support, your prayers and unwavering dedication. Thank you so much.
May 31, 2004 9:45 PM--We're just home from a long weekend away, so I'm going to post an email Betsy sent to me today with Ross's update:
"Ross is doing well, eating chunkier food and sipping unthickened fluids through a crazy straw. He seems to be trying to talk and he really watched John and Mel when they were here. He continues to kick the ball with his right foot, and also move the ball from the side with his foot.
"The most exciting and new thing is that he is sitting on the side of the bed, shifting weight (usually to eat ice cream), with minimal support. Actually, Jeremiah is behind him, but not touching him, so that Ross doesn't fall backwards. The therapists are now teaching us to make transfers without the lift. Ross's right foot can now be flat on the floor, and if he is leaning forward, his stomach muscles and the movement of his head (facilitated by reaching to food) keps him balanced.
"He is also using his charcoal pencil (with the help of special rubber tubing to make it bigger in diameter) to doodle."
Betsy
Thanks to all of you for your support and prayers for Ross and his loved ones.
May 26, 2004 9:30 PM--Betsy said things were going well today. Ross did just great this afternoon. Lisa, the nurse, had him sitting on the side of the bed with very little support for a full twenty minutes. She also worked with Ross on the floor mat and he rolled over completely on his own. The Dillons had visitors today, very old friends they' ve known forever, and Ross was definitely interested in them and paying attention to the conversation. He's also eating really well, moving food around with his tongue and improving daily.
Thank you so much for your continuing presence in Ross's life. You mean a great deal to him during this long recovery.
May 25, 2004 9:40 PM--Betsy said Ross was doing great today, in spite of a possible petit mal seizure earlier this evening. He's been having seizures--usually much more intense--about the same time every month, between the 23rd and 25th. Betsy said this one was so minor, though, they're not even sure it WAS a seizure, though they were definitely watching for them. His anti-seizure meds have been increased and might account for the smaller event.
Last night Ross made his presence known--Betsy said he yelled really loud, and it appeared it was just to get their attention. He was alone in his bedroom at the time, and the yell was definitely a verbal command for someone to come in "right now."
Betsy bought a wooden alphabet puzzle and was using it with Ross, spelling out his name and moving the letters around. Jeremiah also worked with him with the puzzle, and he definitely seemed interested. When spelling Ross's name, Besty asked where the "O" was, and Ross moved it with his hand. He also was making marks with a pencil and paper today and appeared to be watching what he was doing.
He's receptive to following instructions and is very much a part of his daily routine. Betsy said he shows improvement almost daily, though it's obvious he still has a long way to come. Thank you, everyone, for your continuing support, your healing thoughts and prayers for Ross's continuing recovery. He still has a long way to go, but he has come so very far.
May 24, 2004 10:00 PM--Ross had a pretty good day today. Had an 11:00 appointment with his chiropractic neurologist then back home to therapy and work on the pedals. Betsy said she bought a child's toy, a set that included a bat and balls and Velcro gloves to help catch. She put the Velcro disk on Ross's right hand and he was definitely moving his hand to try and catch the ball. Betsy also put a pencil in his hand and left him to doodle with it. She said he was making very finely controlled lines on the paper, and drawing on his own after she left. Ross seemed sort of down today, but Betsy said that if they give him a task he works to complete it and gets really involved in what he's doing.
Thank you, everyone, for your healing thoughts and prayers for Ross and his loved ones.
May 23, 2004 10:20 PM--I called and talked to Betsy tonight to get the update, and then she called me back to tell me Ross was able to drink through a "crazy straw!" It's a big step...he'd just graduated to a longer, narrower straw today, and Betsy decided to try the crazy straw on him and he handled it just great! It requires a lot more "suction" and more coordination, something Ross is getting better at by the day. He's sitting up on the side of his bed now and eating, which means he has to deal with balance as well as getting the food to his mouth. He's taking all his medications by mouth now, as well as all his food. He still gets some water via his stomach tube, but once he's able to take enough fluids by mouth, they should be able to get rid of the stomach tube altogether.
His days are really full, with lots of various therapies from kicking the ball to pedaling and working on the tilt table. He's obviously trying very hard to talk, and a visit to an ear, nose and throat specialist confirmed that his vocal chords are in good shape and speech should come before too long. There is so much positive news to report as we near the two year anniversary of Ross's terrible accident. Those of you who know Ross personally know what a fighter he is. To all of you, whether you knew Ross before his injuries or have only come to know him through the website, thank you so much for your support, your healing prayers and good wishes. You are all a huge part of his recovery. Ross still has a long way to go, but thanks to all of you and his amazing desire to heal, he has come so far.
May 19, 2004 9:25 PM--I wasn't able to make it to the Ride of Silence tonight, but Betsy, Rusty, Ariel and Ross were there...along with almost 100 cyclists making the ride in honor of others who have been killed or injured while riding their bikes. Among the riders were Alan Liu's parents, and it must have been so difficult for them to participate. Their courage is truly admirable.
Betsy said Ross had a tough day today. He was really tired after all the activity yesterday, but they took him tonight and after awhile he seemed to be feeling better. Our thanks and appreciation to everyone who was able to participate in the Rides around the nation. So many useless deaths and terrible injuries to cyclists--their loss needs to be acknowledged.
Thank you, everyone, for your healing prayers, your thoughts and support for Ross and his loved ones.
May 18, 2004 9:40 PM--Even though Ross had a really busy day with doctor's appointments, his mom and Jeremiah still managed to get him to the Santa Rosa Tuesday night crits in time for the races. It was his first time back to the crits since his accident almost two years ago, and the first time a lot of his cycling buddies have seen him. I hadn't seen Ross for quite a few months myself, and I was amazed at how well he looks. He watched the races, paid attention when people spoke to him and looked so much more relaxed than the last time I saw him. Though I talk to Betsy almost every night for the updates, I don't think I realized just how far Ross has come until I got the chance to talk to him tonight and to watch him interact with other people. He's not speaking, but that doesn't mean he's not listening or understanding. He looks so healthy, his color is good, his eyes focused and his expression very intent. I kept waiting for him to say something, because it really feels as if he's ready to talk.
It was really great to see everyone at the races, but even better to see Ross back there among friends. Thank you all for your healing thoughts and your prayers for his recovery.
May 17, 2004 9:15 PM--Ross saw his chiropractic neurologist and his speech pathologist today, and both were really pleased with his progress. The speech pathologist suggested he try eating food with more texture, so Betsy fixed Ross some pasta with a meat and vegetable sauce, then smooshed it up with a fork. He was able to eat it, though he had some trouble at first with the larger "chunks." However, he managed to finish his meal and did really well. The larger pieces of food force him to move his tongue more in order to move the food within his mouth, and he did great.
Ross is also moving his right arm more, as if he's trying to work the stiffness out of it. Betsy said his movements are much more controlled than they used to be. She tried putting a pen in his hand and he was able to move his hand and make some lines and squiggles. With minimal help, he managed to write his name so that it was almost recognizable!
Betsy said Ross seemed to be so into things today, as if more synapses in his brain were firing. For instance, when she got him in the car to go to out today, Jeremiah still was off duty and Betsy said she forgot the pillows they use to help keep Ross upright in his chair. She noticed him slipping to one side when she'd look in the rearview mirror, and said she told Ross to straighten himself up. She said when she looked back, he would be sitting just perfectly straight in his chair, though she didn't actually see him make the adjustment.
Betsy and Rusty are still planning to take Ross to the Tuesday crits tomorrow night at the Corporate Center in Santa Rosa, as well as to the Ride of Silence on Wednesday. Please stop by and say hello if you're at either event. Thank you, everyone, for your healing thoughts and prayers for Ross's recovery.
May 16, 2004 9:15 PM--Don't forget: the Ride of Silence is this Wednesday night. In Santa Rosa, cyclists will be meeting at the Corporate Center. Other communities around the US are also participating. Contact [email protected] to find a ride in your area. Betsy said she is planning to take Ross to the Corporate Center for the beginning of the ride. His dad and sister will be riding. She's also taking Ross to the Tuesday night crits in Santa Rosa on the 18th, weather permitting.
Ross is doing really well and he's progressing at an amazing rate. Sitting up on the side of the bed now and able to eat while sitting. This is a complex set of moves for him that requires shifting his weight and being aware of his center of gravity, all fairly complex maneuvers. He's also getting a lot of physical therapy time on the mat, and spending about 45 minutes at a time on the pedals. He's taking most of his food by mouth now, rather than the stomach tube, and feeding himself with minimal assistance. He's also sucking liquids through a straw, but they still have to be thickened a bit for him.
Jeremiah is off for two days this weekend so Betsy and Rusty have been on their own with Ross, and Betsy said they've been really busy and are keeping him hard at work.
Thank you all for your continuing support, your good thoughts and healing prayers for Ross. He is still improving, almost two years past his accident, and has already surpassed anything doctors originally expected him to accomplish. There are no limits to his continuing recovery.
May 12, 2004 8:45 PM--Ross did really well today, though he was sleepy after his anti-seizure drug, Keppra, the same as yesterday. When I asked Betsy if the new drug appeared to be working, she said the real test will come on the 23rd or 24th of the month, as Ross's seizures appear to fall on those days each month. However, as sleepy as he was, he still had a terrific session with his physical therapist and sat upright on the edge of the bed for about twenty minutes. Betsy had set up the timer for him, and he definitely responds to it. His competitive spirit is definitely strong. He also did well on the floor mat where he spends time on his stomach while someone works along his spinal cord with massage. Ross sees a chiropractic neurologist weekly, and the massage is something beyond the regular adjustments, but Betsy said it appears to be helping.
Ross is also drinking out of a straw better, as well as showing daily improvement in a lot of areas. Thank you so much for your continuing support, for your healing thoughts and prayers.
May 11. 2004 9:45 PM--Ross did really well today. They've changed his anti-seizure drug to one that doesn't cause sodium depletion in his body and also does not go through the liver. Ross seemed to handle the new drug really well and had an excellent session on the tilt table today. He has actually met all the current goals his therapist had for him on the table, including bending over and being able to straighten up on his own, so it's time to move on to more challenging activities.
He's also doing well with "mouth" exercises. Jeremiah said that today he actually licked some food off his lip, which is a first. Ross has not been able to extend his tongue beyond his teeth, so this was a totally new movement. Working from that and helping Ross to work his tongue around his mouth, Jeremiah was able to get him to do more than he's usually able to accomplish. Betsy said he's very patient with Ross and often gets more out of Ross than either Betsy or Rusty.
However, Rusty did bring out the big exercise ball tonight and when he pushed Ross's foot with it, Ross kicked it back. Another "first" tonight happened when they handed Ross his electric toothbrush and let him brush his teeth on his own. Betsy said she usually does it for him, but tonight he brushed his own teeth with minimal guidance.
Ross continues to improve on a daily basis. Small steps, but constant ones. Thank you so much for keeping him in your thoughts and prayers throughout this long, slow recovery. Every step that Ross takes forward represents long hours of work from everyone on his "team," from his family to the many therapists and other professionals and friends who work with him. Every one of you are part of his healing. Thank you.
May 10, 2004 9:10 PM--Betsy said today was terrific and Ross was very alert and involved in the day's activities. He had his appointment today with the chiropractic-neurologist, which went really well, and then saw his speech pathologist. She was very impressed with his improvements, expecially since she hadn't seen Ross for a month. He's now able to eat by mouth, drink through a straw and even drink out of a cup, so she was really pleased with his progress.
Another goal is for Ross to be able to stick his tongue out of his mouth, a movement he's not mastered yet. It's a fairly complex maneuver, but it's all part of being able to move food around inside his mouth with his tongue. His right arm and hand are doing better. Betsy said that when his right arm tightens up, she just has to tell ross to "bring your arm out" and he relaxes it and is able to follow instructions. He's still got some serious damage from the original accident when his elbow was badly injured. It's healed now, but with calcifications and a lot of stiffness. Betsy said they still haven't heard from the Stanford hand clinic, but she suspects the number the doctor was using for contract might have been incorrect and she's sent them the proper one.
In two weeks, Ross has an appointment with an ear, nose and throat specialist to see if there's anything they can do about Ross's congestion. He's always had allergies, but they are much worse this year.
Ross continues to show improvement, though it's been a long, hard time for him. Your support is so important. Thank you for your prayers and healing thoughts, and for remembering Ross as he continues to come back from such horrible injuries.
May 9, 2004 8: 30 PM--Just talked to Betsy and she said Ross is doing absolutely fabulous. He's alert and active and has had a great weekend. When I called he was working the ball with his right foot, kicking it with more control than he's shown in the past. Betsy said he even managed to keep kicking the ball while he was on the phone with Katie--multi-tasking! He's drinking more fluids through a straw and Betsy said she's able to use less thickener as he learns to handle liquids better. He's also taking most of his medications by mouth along with his food, rather than through the tube in his stomach. He's had a really busy few days and was really tired when he went to bed last night. Betsy said he woke up tired and eventually had a small seizure this afternoon, though he didn't appear to have any lasting effects from it. His right arm is still very tense, but Betsy said she can pull it away from his body and he is able to loosen it up and relax the muscles.
Ross continues to show improvement, even now, almost two years past his initial injuries. Thank you so much for your continuing prayers and healing thoughts. Your strength and encouragement are a powerful part of his recovery.
May 5, 2004 8:40 PM--I just talked to Betsy and she said Ross has had a really good day today. Had an excellent physical therapy session and then the new mat arrived and he did some work on that. Rolled from his back to his stomach, but didn't want to roll back over again. He was able to actually drink through the straw today and finished quite a bit of his drink that way. It's such a complex muscle movement to use a straw that Betsy was really excited about this new step. Overall he's just looking really good. Thank you so much for your continuing support of Ross though this long recovery.
May 4, 2004 9:10 PM--Ross saw his neurosurgeon today, who checked on the shunt and said it was functioning just fine. He also had an excellent physical therapy session and spent quite a bit of time kicking the ball. He's feeding himself with help, taking all of his food orally as well as some of his fluids. He's also doing better with "lighter" fluids without as much thickener, which means he's better able to control the flow of liquids once they're in his mouth, to prevent choking. Betsy said he used a straw today and was almost able to draw some of his smoothie into his mouth. Using a straw requires a complex set of muscles and he's just not there yet, but getting closer all the time. Thank you, everyone, for your continuing support, your healing thoughts and prayers for Ross and his family.
May 3, 2004 9:15 PM--First of all, I do apologize for my lack of updates but I've been away since last week and unable to access the website. I talked to Rusty tonight and he said Ross is doing great, that he had a wonderful weekend, is eating quite well on his own now, and seems fully relaxed and back to where he was before his last seizure. He had an excellent meeting today with the chiropractic neurologist, but the one thing that really got my attention is that Ross took his first real "swigs" out of a bottle of beer! Rusty said he was able to form his lips around the opening without putting the entire thing in his mouth like a child might, and took a drink...did it three times without any problem. We need to find him one of those "I work for beer" tee shirts! He's doing so much better than he was just a short time ago...Ross definitely appears to be progressing at a very steady rate. Thank you, everyone, for your continuing support and your healing thoughts and prayers for Ross and his loved ones.
April 27, 2004 9:30 PM--Ross had a better day today. He had an appointment at the hospital for some tests--looks like possible dehydration might have been part of the trouble. Some of his meds require reduced fluid intake because of the problem in keeping his sodium levels consistent, and his increased perspiration from pain might have dehydrated him a bit. Betsy said his trip to the hospital to draw blood was excellent. He handled the trip well, was very alert and watching everyone and every thing. His left pupil doesn't appear as dilated as it usually is. Betsy said the difference has been less since his seizure. They got home around 1:30 and Betsy said she could tell he was in some pain, so she asked if his head was hurting and he nodded. She asked if his stomach hurt and he shook his head no. Then she touched different parts of his head to find out exactly where he hurt--he's definitely able to be more explicit now in his communication. He'll go in for a CT scan in a few days to check on the shunt.
In the meantime, thank you, all, for your continuing support of Ross and his loved ones and for your healing thoughts and prayers.
April 26, 2004 9:55 PM--Ross had kind of a rough day today, too, though he was feeling better tonight. Very tired, toney and obviously uncomfortable most of the day, but started to act more like himself by evening. He's going in for some routine bloodwork tomorrow and will have his shunt checked on Thursday. Please remember Ross and his family and loved ones in your thoughts and prayers.
April 25, 2004 8:45 PM--Ross had kind of a crummy day today, but he hasn't felt really well since his seizure Friday night. However, by tonight he was doing much better. Betsy said she was certain he recognized our son Jon and his wife Melanie when they stopped in to visit on their way back to Boston. Ross is dealing with allergies and hay fever, which means a lot of coughing and drainage from his sinuses, but Betsy said she thought it was more than just that. He was running a low grade fever, sweating and very tense most of the day. He's done this before after a seizure, then moved on to bigger and better things, so possibly it's all part of a growing awareness and not something negative. Still, it's hard not to worry because his health is still very fragile. Betsy said they're taking him in for a scheduled appointment shortly to have the shunt checked and to make sure that's not causing trouble.
In the meantime, please remember Ross and his loved ones in your thoughts and prayers.
April 24, 2004 8:30 PM--Ross's dad said Ross is still pretty wiped out from his seizure yesterday, but was beginning to feel better this evening. Betsy said he looks good--much better than he has after some of his seizures, but they kept his schedule pretty easy today and didn't push him. Betsy said he's still really congested. She's used some Vick's Vaporub on Ross this morning and he loved it. Makes me wonder if it's a "scent memory?" Sometimes, smells of things familiar will trigger all kinds of memories...
Anyway, Betsy said he's tired tonight but she's hoping he'll get a good night's sleep and be back on top of things in the morning. Thank you so much for keeping Ross in your thoughts and prayers. For every one step back, he's always up for two more forward.
April 23, 2004 9:35 PM--Ross had a really good day until he had a seizure tonight around eight o'clock. Rusty said it lasted about three and a half minutes, which is what they consider "moderate." He seems to have them monthly, and though there are certain behaviors that appear common before a seizure: longer naps, tonier muscles, etc., they're not exclusive to the days in which he has a seizure.
Hopefully, this one, like the others, will be a prelude to more advances in Ross's recovery. Please keep Ross and his loved ones in your thoughts and prayers.
April 22, 2004 9:10 PM--Ross had a pretty good day, though he's still congested. Betsy said she's not sure what's causing it, as they work extra hard to keep his immediate environment dust and allergen free. Still, he's got a bad cough and a real problem with congestion. He took a nap this afternoon, then indicated he was uncomfortable, but Betsy said he took an Advil and appeared to feel better later on. He had a great session on the tilt table. They're following the routine of quarter turns during therapy, and it seems to be helping Ross with his balance. Jeremiah also gives Ross his fruit smoothies while he's on the tilt table, and using the food as part of his therapy seems to be a good incentive. I asked Betsy if she thought Ross recognized the challenge in the work he's doing, and she said she was sure he did, using the timer and his response to it as an example.
Thanks to friends of the family who have donated the money to purchase a 5'x10' mat for Ross's therapy, and thanks to all of you for your prayers and healing thoughts. Ross continues to show improvement as his recovery progresses.
April 21, 2004 9:10 PM--Ross had a long day, but a really good one. Betsy said he had physical therapy this morning and the therapist had him sitting on the edge of the bed, balancing and holding his head up. He was able to sit unassisted for about 30 seconds at a time until Betsy set up a timer so Ross could see how long he was sitting. He sat unassisted for five minutes with the timer on, so that was definitely the incentive he needed.
Later on Betsy took him in to Santa Rosa to see the orthopedist about his injured elbow, and the news was better than expected. He does have some bone spurs, but not as serious as they'd feared. The doctor is going to schedule a visit to the Stanford hand clinic to see if there is more that can be done for him.
Tonight he's tired, but that's to be expected after a really long day. Please remember Ross and his loved ones in your thoughts and prayers, as well as the families of the two cyclists killed in Sonoma County this past week, and also Jill Mason, the cyclist who was so badly injured by a drunken driver on Easter Sunday morning.
April 20, 2004 9:10 PM--Betsy said Ross had a good day today. She's realizing how hard he is working, with time on the tilt table, floor exercises, kicking the ball, using the pedals...today he took over an hour's nap and really seemed to benefit from it. Ross is doing well feeding himself. He's found a more comfortable position by putting his elbow down on the table, something he figured out on his own. He's also doing different moves on the tilt table and pushing his own boundaries.
Thank you so much for your continuing prayers and healing thoughts for Ross and his loved ones.
April 19, 2004 9:20 PM--I was reading the entries in the guestbook today and had to laugh at one from Peter Mork, bemoaning the fact I haven't done any "red letter" posts. He's right...things that would have meant a red letter post only a few months ago are now expected facets of Ross's recovery, which tells me just how far Ross has come.Thank you, Peter, for reminding me of that! It's so easy to fall into a routine of updates without thinking of the overall aspects of Ross's recovery. What he is doing now is truly amazing.
Ross's mom agrees. Betsy said Ross went to the chiropractor today for an adjustment, something he seems to really look forward to. After a nap and time working the pedals, Ross was back on the tilt table. The chiropractor has suggested that Ross be turned to the right in gradual increments while on the table, something that might cause more cognitive awareness. Betsy said it worked! She said they could really see it tonight, especially when Ross began working through his exercises without being either helped or reminded. He went through his entire routine on his own. Overall, he's doing beautifully. Sitting up straighter, more aware...eating seems to be a key. Since he began eating by mouth and feeding himself, he's taking huge leaps forward.
To all of you who continue to follow Ross's progress, who pray for him and send healing thoughts, our utmost thanks and gratitude. Your support is a huge part of his recovery.
April 18, 2004 9:15 PM--When I called Betsy tonight she said Ross was doing "SO well," with the emphisis on "so!" She said he is actually able to feed himself now. It's messy and he needs a bit of help, but he can get the spoon into his mouth and can take it out again. He's still having trouble with his right elbow which was so badly injured, but Betsy said it's amazing how well he's doing.
Ross spent an hour on the tilt table tonight. He always seems more alert and involved when he's on the table. Somehow, when he's held upright, it's as if all his senses are on alert, though after his hour he is definitely tired tonight. Still, his improvements are really obvious. He's able to communicate by "mouthing" his comments, though he's not speaking audibly. Betsy said he's able to tell her what he wants and can answer "yes/no" questions with strong shakes or nods of his head, so he's definitely understanding.
Thank you, all of your, for your prayers and healing thoughts for Ross. You are so much a part of his recovery.
April 15, 2004 9:10 PM--Betsy said Ross was really tired tonight, but that's mainly because he had such a good and active day today with lots of therapy. Tonight he was kicking the ball with his right foot and Besty said he was doing really well and showing a lot of control and coordination. He's not trying to much with his left, and that leg is still fairly toney, but Betsy said she's able to move his leg better than she could before and there is more flexibility to it.
Ross is also eating well by mouth. Betsy made some almond milk yogurt that he seems to really like. Ross is allergic to milk and milk products, so it's hard to find foods that provide all the nutrients for him that he can safely eat. Still, Ross continues to do well. He's alert and obviously aware of what is going on around him. Though he's not speaking out loud, he "mouths" words and tries to make himself understood. He's come a long way.
Thank you so much for your healing thoughts and prayers for Ross and his loved ones.
April 14, 2004 9:00 PM--Just talked to Betsy and she said today went well, though it was more of a rest day for Ross. He was fairly toney, but in terms of function it was great. Betsy said he seemed a little emotional, and we wondered if maybe he was picking up on the conversations about Alan Liu and Jill Mason. Ross is very aware of what is going on around him, and obviously there has been a lot of discussion over this horrible accident that took Alan's life and has injured Jill so badly.
April 13, 2004 9:10 PM--I apologize for the lack of updates for the last five days, but I've been away and unable to access the website. Betsy sent me an email tonight to catch us up on things about Ross--I know it's been a really tough time for the Dillons with the death of another cyclist and the terrible injuries to his companion bringing back so much of the pain from Ross's accident:
Kate,
I thought I would write down what I can remember since my mind is a sieve.
Ross had a good weekend and seemed to be less confused with a house full of people than anytime since he was injured. His sleep at night is often disrupted for hours; other nights he sleeps through. I think postnasal drip and the accompanying coughing often awakens him, and he can't go back to sleep. I fear that scar tissue in his sinuses from the fracture and repair of his sinuses are causing his allergies to be worse.
He is much more relaxed in his arms and hands and we have new hand splints for dealing with the contractures in his hands. Cognitively, he is doing better. After he had an adjustment yesterday at the chiropractor's, I said, "Having an adjustment must feel good."
He nodded his head yes vigorously. Later, I said "Hi" to him and he mouthed back, "Hi."
Today, I pursured my lips to blow a kiss and he did the same thing.
The speech pathologist was very excited with his progress in opening his mouth for food, immediately swallowing, and being able to drink a smoothie from a sippy cup.
He continues to make progress in trunk control and holding his head up without support.
It seems that Ross and the cyclist who was hit by a car on Sunday knew each other; they both graduated from Santa Clara University and they have friends in common. We ask that people will pray for Jill and her family and also pray for the family of Alan Liu who died when the car hit him. When a cyclist is hit from behind, there is no warning, no defensive action that can be taken. A cyclist is at the mercy of drivers who we all assume are going to be responsible as they drive. When the driver fails to care enough to drive responsibly, it is a broken contract and it is the person who is hit who suffers.
Betsy
Please keep Alan's family as well as Jill and her loved ones in your thoughts and prayers. This has to be such a terrible time for all of them.
April 8, 2004 8:40 PM--Betsy said Ross had a pretty good day, though he didn't sleep well last night. She said his allergies are bothering him and he coughed a lot, but he did sleep in until 10:30 this morning. He was pretty tense and toney most of the day, though he did enjoy his cup of coffee. Betsy said she gave him regular (not thickened) coffee in a spoon and put it close agains his lips. He was able to "slurp" it up, which is a fairly involved muscular action. Baby steps, but still steps forward. He just keeps moving forward. Thank you, everyone, for your continuing support.
April 7, 2004 8:20 PM--Just talked to Betsy and she said Ross had a really good day today and did just great. Had an excellent physical therapy session, rolling from side to back w/o help and sitting on the side of the bed unassisted. His nurse, Lisa, came today, and after Ross's bath he spent enough time outside to actually get a bit of sun. Betsy said when he came in an hour later he looked really healthy and his color was great. Now, since I remember Ross during the bike racing season, sunburning until he and Jon used to sit here and peel long strips of skin off his back, it was nice to hear from Betsy that he only got a "little bit" of sun!
When I called, he was working on the pedals with a video of the 2002 Tour de France playing on the TV for inspiration.
Lisa put a spoon in his hand while feeding him today, and Ross was able to lift it to his mouth and open his mouth. Betsy said he seems to be getting more fine motor skills back in his right arm, even though that is the one with the badly calcified elbow. They're taking him to see an orthopedist in a couple weeks to find out what kind of treatment they can get to help give Ross more mobility with less pain, hopefully something that doesn't include surgery. Betsy said she'd heard they are using radiation to remove calcification in joints, so that might possibly be an option.
If Ross's recovery seems at all slow, do as I did last night and go back and look at entries just a few months ago. He has come SO FAR! Thank you, everyone, for your unwavering support, your healing thoughts and prayers for Ross's recovery. You are so important to him, and we can't thank you enough.
April 6, 2004 10:10 PM--Ross had two seizures today, both mild but still scary for his family and for him as well, I imagine. They lasted a couple minutes each and were not grand mal types. Betsy said there's no way to know if it's a result of reducing some of his meds or possibly a problem with the shunt, or even something totally unrelated. They have a call in to the doctor to see what steps they should take next.
On a good note, Betsy said that when she was drinking her coffee this morning, she fixed some for Ross as well, but she adds a thickener to his to help prevent choking. She said he kept eyeing her cup, then looking at his cup, letting her know he definitely preferred unadulterated coffee!
Although the seizures can be pretty frightening for everyone concerned, they can also be a precursor to more healing within Ross's brain. Other brain injured patient caretakers have commented on the fact that seizures often occur just before a new breakthrough. Please remember Ross in your thoughts and prayers, that his healing continue and the seizures mean his brain is repairing and mending. Thank you so much for your very important role in his recovery.
April 5, 2003 10:10 PM--I'm not certain why, but for some reason my post last night didn't post! That's never happened before. I must not have saved it properly, and I do apologize.
I talked to Betsy earlier this evening and she said Ross had a good day today. He slept all night and had his breakfast by mouth. In the past five days, he's taken only one meal through the feeding tube. Everything else has been by mouth, something he could barely manage just a few short weeks ago.
He spent time working on the pedals, Betsy worked with him doing his mouth exercises, he had lunch, took a nap and then got up to more exercises and therapy. Jeremiah had him working on the mat and also doing the pedals.
Another thing that's really exciting is the fact they are reducing the use of one of the drugs Ross takes that can become addictive and cause seuzures when it's withdrawn. However, under a doctor's care, they are giving Ross a natural supplement called GABA (gamma-aminobutyric acid) which is an acid found in the central nervous system -- predominantly in the brain -- where it acts as an inhibitor of nerve impulses. This supplement takes the place of the other prescribed medicine, but without the dangerous side effects. Hopefully, Ross will be able to reduce the more dangerous drug while taking the supplement.
He's beginning to use more "body language." Betsy said that tonight he shrugged his right shoulder and gave her kind of an inquisitive look when she was talking about something. He also tried to lift a napkin to his face to wipe his mouth.
So much of what Ross is doing may seem terribly rudimentary, but when you compare it to what he could do just a few short months ago, it's a reminder of just how amazing his recover has been. Thank you so much for your prayers and healing thoughts. Your are all part of his healing process.
April 3, 2004 9:00 PM--Not much to report today. Betsy said it was a quiet day, but Ross was fairly toney and seemed blue...but, like Betsy said, as he becomes more aware of his circumstances, he's bound to feel more depressed. Please keep Ross in your thoughts and prayers. He needs all of your positive energy as he regains awareness of himself and the world around him.
April 2, 2004 8:45 PM--Ross had a good day and is doing really well. Rusty took him into the hospital this morning for some routine blood work and the rest of the day was spent with therapy and enjoying the gorgeous weather outside. Betsy said he did range of motion exercises, spent about 18 minutes on the pedals and had a terrific tilt table session.
On a personal note, our daughter and son-in-law are the proud parents of a new baby girl, born at 2:55 A.M. this morning. Grace Katherine weighs 7 lbs, 10 oz and is 19.5 inches long--she is already at home tonight with her big brother, Luca. Grace was in a hurry to arrive and made her appearance just 14 minutes after Sarah and Tony got to the hospital, where the very talented nurses at Santa Rosa Memorial delivered our granddaughter before the doctor arrived.
There is so much for us to be thankful for, most especially all of you who are so much a part of Ross's recovery. Thank you so much for keeping Ross and his loved ones in your thoughts and prayers.
April 1, 2004 9:10 PM--Ross did really well today, in spite of the fact he didn't sleep much last night. Betsy said he was awake from 2:30 to about 6:00 AM. He had his breakfast at 5:00 AM and ate it entirely by mouth rather than a feeding through his stomach tube. After his breakfast, he went right to sleep. Later in the day, Betsy said he had a terrific session on the tilt table, and it's obvious he's trying really hard to talk. She said it's hard to recall how poorly he was doing just a couple days ago.
Thank you, everyone, for your healing thoughts, your support and your prayers for Ross's recovery.
March 31, 2004 8:00 PM--Ross had a much better day today. Betsy said they got him up around 9:00, before Scott, a wonderul psychologist, came by. He played some music for Ross, songs Ariel had taped that were Ross's favorites, to see how he would respond. Betsy said Ross definitely recognized some of the music and responded to it. He also got a massage today and was looking really good tonight. He's "mouthing" words, but Betsy said they're not really sure what he is trying to say. He worked on the pedals for awhile. At some point he'll be able to use them to exercise his arms, but they have to get his right elbow working better first. He had a terrible break in his elbow from the accident and has some serious calcification problems now which prohibit him from bending it all the way.
Thank you, everyone, for your healing thoughts and prayers for Ross's recovery.
March 30, 2004--Ross's mom emailed the update Wednesday morning, so I'll just post her message verbatim:
Ross was sleepy in the morning, was okay for PT, but not great. He became toney, agitated and was coughing a lot as the morning progressed. One interesting thing is that I got out the container of Vicks Vapor Rub and let him smell it. The menthol seems to help open up his sinuses. He really enjoyed it and keep sniffing for about 10 minutes. Around 3 PM when we offered him a smoothie, he refused. His eyes looked glazed and his temp was 99 axillary (add a degree for thermometer-in-mouth equivalent). I asked him if he hurt and did not get an answer, but he did nod yes when I asked if his throat hurt. We gave him an Advil and I left to run an errand. When I returned an hour later, he had eaten the smoothie. Jeremiah said that when he ate his lunch, Ross looked longingly at it and when he offered the smoothie, Ross ate all 12 ounces.
When Jeremiah got him up for mat exercises and the pedals around 6, he did well and he clearly felt much better. He ate all of his dinner, watched me play Solitaire and then went off to bed around 8:30. Jeremiah said that he slept well through the night. I am thinking that as Ross is more alert, he is also more disoriented at times and that is possibly very scary.
Take care.
Betsy
March 29, 2004 9:00 PM--Betsy said Ross didn't have a very good day today. He had to be up earlier than usual for his physical therapy, so he wasn't as wide awake for his session, though he did well. After a nap, Betsy took him into the speech pathologist for an appointment, where he was tired and toney and not at all cooperative. Betsy said she ended up pulling the "good cop/bad cop" routine--all by herself--but it worked enough that Ross was able to get through his session okay. However, later he had a petit mal seizure, not as serious as some he's had, but enough that Betsy said they gave him his anti-seizure medications early. She's hopeful this is just a prelude to another big step forward, something that often occurs following a seizure.
One fairly tough moment happened when Betsy sat and talked to Ross tongiht. She said he looked rather sad and blue, and she explained to him again that he'd had a terrible accident but he was getting better, that he was home with his family. She said Ross started to cry, which tells her he understands what she is saying, but it's so tough to watch him go through this. My personal feelings are that, as tough as it is for Ross, it's got to be even harder for his parents, his sisters, and for Katie. Please keep all of Ross and all of his family in your thoughts and prayers. You are all such a powerful part of his recovery.
March 28, 2004 9:00 PM--Ross had a visit with a neurologist on Friday for a general exam. Betsy said she bombarded the poor doctor with a long list of questions, but was quite happy with the information she got. Ross did really well and was bright, alert and cooperative for the visit. The doctor ordered some blood work to check on a few things and to establish a base from which to work. He's also going to have Ross back off on some of his medications that can become physically addictive over time, but it will require substituting other substances to help his body adjust. (Sorry I'm not being more specific, but there is no way I can figure out the spelling on some of the stuff Ross takes! Will try and clarify this at a later date.)
Betsy said she and Rusty got Ross home around one after the visit and put him to bed, assuming he would be really tired from the outing, but he didn't want to be in bed and yelled loud enough that Betsy said she and Lisa, his nurse, could hear him out in the kitchen. He's not speaking yet, but he has learned to vocalize!
He had a really good weekend, working on the pedals, the tilt table and the many other therapies that are part of his daily routine. Betsy said he's also eating well and taking most of his meals by mouth, something he couldn't do just a few weeks ago.
When I look back over this record of Ross's long recovery, I am absolutely amazed by how far he has come. Much of his healing is due to the many prayers and the constant support of so many of you. Thank you for all you have done for Ross and his family.
March 25, 2004 9:00 PM--Betsy said Ross had a terrific day, even though he didn't sleep well last night. He's moving his mouth a lot, as if trying to form words, and Betsy said he's also eating really well by mouth. Tomorrow he has a visit with a neurologist, so Betsy is hoping he gets a good night's sleep tonight. Please hold the good thought for Ross when he sees the doctor Friday morning.
March 24, 2004 9:20 PM--Betsy said Ross is doing surprisingly well following his seizure yesterday. He had a good day, managed to drink a smoothie from a cup with the occupational therapist and also washed his face with some help. The goal is to teach him to do a lot more for himself as soon as he's able.
Your support, your healing thoughts and prayers make an amazing difference in Ross's life. Thank you.
March 23, 2004 9:45 PM--Ross was tired and toney today, though he did well in physical therapy. He took a nap afterwards, but later this afternoon he had a seizure that lasted between 3 1/2 and four minutes. Betsy said it was really unusual because only his right arm seemed to be involved. His legs didn't move at all. Within a half hour afterwards he was moving his arms freely and vocalizing quite a bit, though not in any understandable words. Within the hour, he was tracking well and clearly following Ariel as she moved about the room. He has an appointment with a neurologist on Friday, so Betsy is hoping to get answers to some of the questions they have. Thank you, everyone, for your healing thoughts and your prayers for Ross and his family.
March 22, 2004 9:15 PM--Ross slept really well last night in spite of all the congestion from his allergies. Betsy said they had to wake him up in order to have him ready for his ten a.m. physical therapy. He did well, including sitting on the side of the bed for half an hour with very little help. They had to go into Santa Rosa for a visit with the speech pathologist. Betsy said Ross was wide awake and very alert going in, but even though they arrived on time, they had to wait for their appointment. By the time the SP saw Ross he was very tired and didn't do all that well, though Betsy said the speech pathologist was awesome--very patient and understanding. After the appointment, they went out for smoothies, something Ross absolutely loves. He got a nap this afternoon, but ate his dinner by mouth and continued to look longingly at the food when everyone else was eating. Betsy said he's also paying attention to things farther away from him--for instance, when he was in the great room and Betsy was in the kitchen, Ross was watching her. He's definitely more aware of things outside his immediate sphere.
He continues to show improvement, though in very small increments. However, if you go back and look where Ross was a year ago, it's amazing how far he's come. In many ways, that improvement is due to all of you, to your prayers, your support, your constant thoughts of Ross and his loved ones. Thank you so much.
March 21, 2004 9:10 PM--Betsy said Ross was doing really well today, even though he didn't get much sleep last night. Between naps today, though, he had a session on the tilt table, worked with the pedals, sat on the side of the bed and balance, worked on the floor mat and spent time kicking the ball suspened in front of him. Betsy said he's reaced the point where he can do it without looking at his feet, which is quite exciting. He's mostly using his right foot. He continues to show improvement every day. Thank you so much for your thoughts and prayers during Ross's long recovery.
March 20, 2004--note from Betsy while I was away:
Ross did three things today that were awesome. This morning he sucked through a straw for the first time. He brought the fluid up through the straw twice, but I am not sure it went into his mouth. The third time, he pulled it into his mouth and made a face. A little later, he released his bite on the hard rubber exerciser that he had between his teeth on command, not just once but three times. The last thing was tonight around 6:30, when he mouthed, "I love you."
His new ex-n-flex pedals came yesterday, and he has had two sessions, one each day that lasted only 5-6 minutes each time. He continues to roll on to his stomach and back again to his side. And of course, he is still eating well. He is eating 3 meals + snacks each day.
We have a lot to be thankful for.
Betsy
March 18, 2004 9:20 PM--Just talked to Betsy and she said that Ross had a terrific day. His congestion is improving and he had a great session on the tilt table and working the pedals. He also used both feet to position and kick a ball that was suspended in front of him. Betsy also said she found an ice cream Ross can eat. He is allergic to milk and milk products, so it's not easy to find things that are good tasting to give to him, but she found one made from hazelnuts that he really loves.
Thank you so much for your healing prayers, your thoughts and your support. You all mean a great deal to Ross, his family and his fiancée.
March 17, 2004 9:15 PM--Ross had another good day that actually included a massage so good he fell asleep afterwards. As his mom said, that's always the hallmark of a good massage! He's still really congested from allergies, but this warm weather we're having has everything blooming and pollinating like mad. Betsy said they've gotten some new meds from the health food store to try and help alleviate his cough, but he just started on them today.
Tonight Betsy hung a ball from a beam for Ross to kick. She said he spent a lot of time moving it into position with his feet and then kicking it. Small kicks, but the moves were very definite and he kept at it. He's also moving more in his sleep at night, rolling from side to back and moving his legs. Small things, but constant signs of recovery.
Thank you everyone for your healing thoughts, your support and your prayers for Ross's recovery.
March 16, 2004 9:15 PM--Betsy said Ross had a really good day today, though he's terribly congested with allergies. Still, he had a great session on the tilt table, is eating more by mouth all the time, rolling from his side to his back and then back again on the floor mat, and generally showing consistent improvement. Tonight, Betsy said he's really tired, but they kept him busy all day long.
Thank you, everyone, for your continuing support, for your prayers and healing thoughts.
March 15, 2004 10:15 PM--Today went well, though Betsy said she was worried about Ross's cough last night. Pneumonia is always something they have to be concerned about, but then today, when Ross had physical therapy, he rolled all the way over by himself, then sat unassisted on the side of the bed for fifteen minutes. The more Ross is able to move himself, the less the risk of problems with his lungs.
They went into town for speech therapy, and Dr. Swain was very impressed with Ross's improvement. In fact, she used the word "phenomenal" to describe Ross's progress. He's eating well and finished off almost an entire smoothie today, eating about a cup and a half of it with a spoon. Betsy said they're working on his using straws, but he's not there yet.
Ross continues to show improvement. Thank you, all of you, for your prayers and healing thoughts for Ross's recovery.
March 14, 2004 9:20 PM--Just a brief note to say that Ross had a fairly good day, though is allegies were definitey a a problem. Betsy said he's very alert and aware of what's going on around him. Thank you, everyone, for your healing thoughts, your prayers and your concern during Ross' s long recovery.
March 13, 2004 9:00 PM--Betsy said Ross had a very good day. He's eating lots by spoon, he's alert and watching everything. She said he's really a part of things. They had a bit of a scare when his oxygen saturation levels dropped a bit during his nebulizer treatment, but it came right back up and he did great the rest of the day.
Our thanks to everyone for keeping Ross in their prayers, for thinking of him and sending healing thoughts. You are very much a part of his recovery.
March 12, 2004 9:15 PM--Ross had a really good day today. He's eating well...his food is all mashed and puréed but he is able to take it by mouth and, some of the time, to feed himself a bit with the spoon. A big difference from having his meals injected into his stomach through a tube. He's able to experience taste and some texture, though it all has to be kept fairly smooth and liquified in order for him to manage it. He's able to hold his head up for long periods of time now while he's on his stomach and is doing more every day. His hands are more relaxed, his feet no longer turn in and he's alert and attentive to all the activities going on around him.
Please take a look at the notice at the top of this page about the "Ride of Silence." If any of you are in a position to organize a ride in your community, please think of doing this. It's so important to make folks aware of cyclists on the road.
Thank you, everyone, for your kind notes, your healing prayers and thoughts for Ross and his family.
March 11, 2004 10:00 PM--Ross had a really wonderful day today...his mom said he slept well last night and this morning drank half of his latte by mouth, the other half through his feeding tube. He also ate chicken/apple sausage by mouth and green salad. Everything is, of course, puréed, but the flavor is still there and Ross appears to love it. He's definitely more aware of his food, and Betsy said she's paying more attention to flavors now that he's eating more by mouth. He took a long nap, then had a great session on the tilt table. Jeremy, his physical therapist, also gave him more food by mouth, which he seems to enjoy.
Still no more words, but Betsy said he is moving his mouth a lot, as if he's trying to talk. Thank you, all of you, for your thoughtful notes, your prayers and your healing thoughts.
March 10, 2004 10:00 PM--Ross ate two meals by spoon today, opening his mouth, using his tongue to move food around, swallowing...he's doing really well and this is a huge step. The food is ground up really small, but still it's a huge improvement for him to be able to take food by mouth and swallow. He also spent time on his stomach moving an stretching, and tonight was knocking a tennis ball off his tray for the dog to chase. He did that about half a dozen times.
His improvements are growing by the day. Thank you, everyone, for your thoughts and healing prayers.
March 9, 2004 9:00 PM--Ross had a pretty good day today. Got up early for physical therapy, then took a nap. Later he worked on the pedals, though Betsy said he didn't look too comfortable and didn't stay with it too long. He ate about 4 tablespoons of applesauce, which may not sound like a lot, but the fact is, he's finally opening his mouth really well and swallowing without any trouble, which is a huge step for him. Betsy said that when she puts the spoon in his hand, he works really hard at trying to bring it to his mouth and opening his mouth. She also said she can see him trying to put all the "pieces" together, ie: the act of eating, chewing, swallowing, as if he's trying to recall doing this before. He also appears to really be trying to talk, though he's not said anything else since he spoke on the third.
Ross has also decided to let Betsy use an electric toothbrush to clean his teeth, and is able to open his mouth to give her access. She thinks that the spoon feeding is a big part of his new skills...it's more than just the food. It must be triggering all kinds of memories for him.
Thank you all so much for your continuing support of Ross, for your prayers for his recovery and your kind and generous thoughts.
March 8, 2004 9:30 PM--Today went well. Ross had physical therapy this morning, but since the physical therapist had run the Napa Marathon the day before and was kind of sore, she didn't work Ross quite as hard as she might have otherwise. The speech pathologist cancelled because of an emergency, so Betsy took Ross out for a latte and then to a park in Santa Rosa. She said he drank a lot of her latte by spoon and also handled the car ride really well. The chiropratic neurologist who treats Ross had suggested car rides because they help him with vestibular integration--essentially helping him to balance. Betsy said Ross rested for awhile this afternoon then had a good tilt table session and did well on the pedals. The biggest change, she thinks, is in his ability to tolerate more activity for longer periods.
Thank you so much for your prayers, your thoughtful messages to Ross in his guestbook, and your healing thoughts for him.
March 7, 2004 8:15 PM--Today Betsy and Rusty took Ross out for a ride, and they ended up going to Murphy's Pub in Glen Ellen, where Ross used to work. Betsy said she ordered a non alcoholic beer with her fish and chips, and Rusty ordered the "real" thing. Ross drank some of Betsy's, but she said he really seemed to prefer Rusty's! Unfortunately because of all the meds he's on, he couldn't have very much alcohol, but Betsy said it was fun to let him try some because he so obviously enjoyed it. He also ate some of Betsy's fish without the batter and some of the cooked peas they serve. She said he seems to be trying really hard to speak, but so far he hasn't said anything else.
She did say he continues to do exceptionally well on the tilt table and he's very relaxed and alert. It's really exciting to see his continuing improvement. Thank you, all of you, for your thoughts and prayers and also to those of you who have written such nice notes to Ross's guestbook. His folks read all of those messages to him and then definitely mean a lot to the family.
March 5, 2004--I was away on the 5th so Betsy emailed me an update for the day:
Ross's new OT was here today. She is concerned because his hands are beginning to contract. She is telling us how to treat that and we have some ideas ourselves. Thankfully, when he is peacefully sleeping his hands are completely relaxed. Ross is much more alert these days, and I have noticed that he has more tone (tension in his body) since he has become more alert.
Ross again spent time on a mat on the floor. He seems to really enjoy being flat and on a firm surface. He again rolled from his side to his back several times. He did well eating applesauce-four tablespoons tonight. He was still looking longingly at the bowl so I gave him a tablespoon of soy yogurt. When that was finished, I said something about more and he moved his right arm in what seemed an attempt at purposeful movement. That gave me the idea of placing the spoon in his hand. He surprised me by holding the spoon, somewhat like a baby holds a spoon. I was able to scoop yogurt on the spoon while he held it, help him bring it to his mouth and he opened his mouth and ate it. He seemed overwhelmed by the experience. After eating 5 spoonfuls of yougurt, he was looking pensive, puzzled, sad? I am not sure, but it was definitely an emotional experience.
He is now sleeping soundly.
March 4, 2004 8:00 PM--Today wasn't nearly as exciting, but Betsy said Ross is definitely moving his mouth a lot and appears to be trying to talk. She had to be gone for much of the day taking care of errands and business, but Ross had a full day of therapy and work with his caretaker and therapists. Betsy said that when she got home, he'd had a good session on the tilt table and had spent time working the pedals, but there were no actual words today. He's done it before, though, and he'll do it again.
Thank you so much for all your wonderful notes and messages today. It's kind of overwhelming when I realize how many terrific people there are who regularly follow Ross through his website. You are all part of a powerful force in his revovery.
March 3, 2004 9:15 PM--It's been one year and nine months to the day since his life was irrevocably changed, but Ross spoke clearly to his mom for the first time since he was injured, this afternoon. It was only a single phrase, "How are you?" but Betsy said it was spoken clearly and without any sign of speech impediment. The doctors at Kentfield told Betsy that when he started speaking, Ross would most likely repeat phrases he has heard often...Betsy said she walked into his room and asked him, "How are you?" and Ross repeated the phrase. That's pretty exciting stuff! She said it wasn't said with his usual inflection, but it was clear and very definitely audible.
Other than that, it was a fairly routine day, (as if anything could be routine after that!) with Ross doing his exercises and therapy, eating a bit from a spoon, and generally working hard at getting healthy again. Betsy said he's extremely alert, obviously interested in everything going on around him, and very definitely showing signs of recovery. Thank you, everyone, for your continued support, for keeping Ross in your prayers and for sending him all those healing thoughts. They've very obviously paying off.
March 2, 2004 8:30 PM--Today was another busy day. Ross slept all night long, barely even waking when Betsy fed him through the stomach tube at five. He finally got up at eight and was on the tilt table by nine. He also spent almost half an hour pushing the pedals, then ate six full tablespoons of applesauce by mouth, the most he's ever done at a single sitting. His swallowing is definitely improving.
Betsy said she helped him with his mouth exercises, then he had lunch. Afterwards, Jeremiah took him outside in his chair to enjoy some of the gorgeous weather we're suddenly having. Ross's afternoon was just as busy with therapy and a couple of rest periods. Also, Betsy fed him more food by mouth, including some pureed lamb and a few bites of espresso chocolate torte a friend brought over. She said he really seemed to like it, but the consistency was different from what he's been eating. He did more mouth exercises and then Betsy brushed his teeth. She's using an electric tooth brush on him and Ross tolerates it really well. Now, Betsy said, he seems exhausted and his eyes look sleepy. Jeremiah is getting him ready for his bath and bed.
Ross's days are very full with therapy and exercises, but it's definitely paying off. He's showing constant improvement, is more alert every day, and developing more skills. Thank you, all of you, for your continuing support, your healing thoughts and your prayers for Ross. His recovery is very much a group effort.
March 1, 2004 9:20 PM--Ross had a really busy day today, with physical therapy in the morining, including rolling on the floor mat and sitting up on the side of the bed w/o any support in back and merely a light touch from the therapist's hand for balance. Later, Betsy and Jeremiah took Ross in to Santa Rosa to see Dr. Swain, the speech pahtologist, who said she could see a lot of improvement in Ross since she last saw him two weeks ago. Betsy said they came home with a lot of new exercises for Ross to do to help him improve his swallowing and tongue movement, all a prelude to speech.
After their appointment, Betsy said they took Ross in his wheelchair to Montgomery Village and wandered through the grounds, looking at the flowers. Eventually they ended up in a coffee shop. At first Ross seemed upset, but one of his therapists explained later that scents can have a truly visceral effect on a person because the input goes directly to the brain stem. Ross was probably upset by the familiarity of the smells of coffee. Betsy said she explained to him where he was and that he would soon be able to drink coffee again out of a cup, but in the meantime, she shared her latte with him and he really seemed to enjoy it. She said that trips like this are good for him, though it's quite difficult to get him in and out of the van in the wheelchair, but they hope to make it a regular thing whenever he has an appointment in town. Ross used to love Peet's Coffee, so Betsy said they're hoping to take him to the new shop in Santa Rosa one of these days.
Thank you so much, all of you, for your kind notes, healing prayers and continual support of Ross and his ongoing recovery.
February 29, 2004 10:00 PM--I've been away since Thursday, but Betsy has continued to send me updates by email, so I'll post them verbatim:
Thursday, 2/26/04--"Ross had a good day with an awesome tilt table session with Jeremy--great head and trunk control and tracking. He is still eating well and now opening his teeth more volitionally. More moving his mouth as if he were talking softly and more of those looks that seem to say, "I have a fleeting memory of ? What is it?" Also more times of looking blue. Also more half smiles. All of this means he is more alert, and more cognitively functional. I can hardly wait to have him tell me about himself and what he is thinking and feeling.
I am so grateful to all of the people who have written to tell us they believe Ross will continue to improve. Thank you to all of them who have not forgotten Ross."
Friday, 2/27/04--"Ross laughed this morning and continued to laugh with me for a while. We looked at an album that Katie had put together for him and he laughed at some of the pictures. He also laughed at my dancing antics. He then fell asleep after eating a little of the butternut squash I doctored to make taste like pumpkin pie at 10:30 AM. Lisa gave him a bath in the bathtub around noon and he fell asleep afterward. Lisa finally actively woke him around six tonight. He was awake and watched television with me until around 8:30. He is now having a bath and will hopefully sleep through the night. It has been a while since he slept this much during the day."
Saturday 2/28/04--"Ross had a good day. Lisa had him on a mat on the floor for hours today. We propped him up when it was time to eat, then after digestion time, put him back flat on the mat. He hung out on his side for quite a while. He really seems to like being able to rub his cheeks on the mat. He rolled himself from lying on his side to his back seven or eight times. This was without any help. It was exciting to watch him moving himself.
I did his mouth exercises this evening, and then fed him a little more than 1/4 cup applesauce. He did very well. He also enthusiastically participated in brushing his teeth.
He then pedaled for about twenty minutes, but he was pretty tired and seemed angry. He is now back in bed and will hopefully sleep through the night as he did last night."
I just called Betsy and she said that today was a bit lower key. Ross seemed particularly tense. She asked him if he was in pain and he nodded "yes," so she asked if it was his head, but he didn't react. However, when she asked if it was his back, he nodded that it was. He's been doing more exercises on the floor, and that could be the source of his discomfort, but like Betsy said, short term memory problems are very common with brain injury, and Ross might not remember all the exercises he's done that have made him hurt. There's also the added problem that, as he becomes more aware of his condition, he will most likely feel more pain and be more depressed as he understands the extent of his injuries. There's just no way around that, as it's all part of his awareness.
His pulse was quite elevated tonight, at about 148, but after some ibuprofen, it came back down.
Thank you, all of you, for your continuing support and your healing prayers for Ross and his loved ones. He is recovering, slow though it may seem, but his injuries were so terrible that it's amazing how well he's doing. You are all part of a very amazing and powerful support system, and words alone cannot express our appreciation. Thank you.
February 25, 2004 11:50 PM--My apologies: I was not able to get this posted last night--Betsy said Ross is doing really well. His nurse, Lisa, was here today and they spent a lot of time with him working on the mat, rolling from his side to his back. After practicing for quite some time, Ross made it clear he wanted to roll to his stomach, not his back! He seems to really enjoy the time on the mat and definitely works at the exercises he's given.
Betsy said that, in the past week more than ever, she has really felt that Ross is trying to talk. He's working his mouth and tongue, laughing a lot and is very alert and in tune with what's going on around him, but she said she can feel his frustration at not being able to communicate. That frustration might be exactly what drives him.
The pulse-oximeter the Dillons were hoping for was donated yesterday by a thoughtful reader. Thank you so much! I've suggested to the Dillons that they give me a list of things Ross and/or his therapists can use, so I can update whenever something comes up. So many folks have unused equipment gathering dust in storage, items that could make all the difference for Ross during rehab.
Thank you so much for your continuing support, for your thoughtful prayers and healing thoughts for Ross and his loved ones.
February 24, 2004 9:30 PM--Ross had a really good day in spite of his small seizure last night, and his mom said he seems to be just fine. He had a great session with his physical therapist on the tilt table and also spent quite a long time with his new occupational therapist from Sonoma Valley Health Center. She evaluated his range of motion and Betsy said she had lots of new ideas. She is setting goals for Ross to be able to feed himself as well as to move himself from the bed to his wheelchair. Betsy said she is just fabulous, Ross obviously liked her and her plans are really exciting.
He's already come so far, I can't imagine him not being able to meet those goals. Please keep Ross in your prayers. Thank you for staying involved in his recovery.
February 23, 2004 9:15 PM--I just talked to Betsy. She said Ross had a really good day, but then, just before I called, he had a short seizure. This one only lasted about a minute and a half, and he was already looking better, so it obviously won't have the same debilitating effect as the four minute seizure he had last time. Other than the seizure, Ross had a really good day. Betsy said he's doing really well eating by mouth, though the bulk of his nourishment is still through his feeding tube. They took him to the hospital today for some blood work, which is routine, and he was fairly tense for the trip and appeared to be uncomfortable while they were gone, but he took a good nap when they got home and was a lot more relaxed. Overall, he's doing great. He's alert, aware of what is going on around him, and working hard in therapy. He sat, totally unsupported, on the side of the bed today, though it was for a very brief time. He balanced for an even longer period when the therapist held his hand. He is definitely recovering, though each step seems really small. Thank you, everyone, for your healing thoughts and your prayers for Ross and his loved ones.
February 22, 2004 8:40 PM--Betsy said Ross is doing great. He's doing especially well taking food by spoon...the bulk of his food is still given to him through a tube into his stomach, but he is able to open his mouth and swallow pureed foods now. He's also doing really well opening and closing his mouth over a rubber exercise tool the speech pathologist gave him just last week. He's able to open his mouth to release it, something he couldn't do before. His mom said he's very alert and, in spite of some muscle tone, doing really well. They're hoping to get him into the adaptive PE courses at the junior college later in the spring or summer. In the meantime, he continues to show improvement, slowly but surely, every day.
Thank you so much for your continued support and your prayers for Ross's recovery. As I noted at the top of the page, Ross's rehab team could really use a pulse-oximeter. It is a common medical device that many people may have laying around, but no longer need, and if you have one you could donate, it would definitely be put to good use. Thank you.
February 19, 2004 10:00 PM--Betsy said Ross is doing really well. He managed to eat 20 spoonfuls of applesauce last night, though he wasn't as crazy about the strained pears Betsy tried to give him tonight. Discriminating tastes? :-) He didn't sleep all that well last night, but Betsy said he was still really alert today and very responsive.
At one point she was working with his hands. He had his about six inches apart, palms down in loose fists. Betsy put her hands together between his and asked him to try and touch hers. She said he used his entire body to make the movement, but he managed to touch hers with his fingers three times. They're also doing a lot of speech therapy, working with a rubber piece that Ross can hold in his mouth, as well as massaging his gums to help increase the production of saliva, which in turn causes him to swallow and work the muscles in his throat.
Thank you all so much for your continuing support, your healing thoughts and your prayers. Ross's recovery is continual, his progress always forward, no matter how slow it may seem at times. Still, he continues to develop and improve his physical skills every day. You are all very much a part of his recovery.
February 16, 2004 9:45 PM--Betsy sent me a note this morning that said:
This morning, Ross not only raised his head for five minutes, mostly doing the shoulder work himself for three of those minutes, but after a rest he initiated raising his head on his own and without anyone touching him, holding his head up for 90 seconds.
Betsy
When I spoke with her tonight, she said that Ross initiating raising his head is a good sign. He was also able to eat some applesauce and was swallowing well, though he's had some problem with coughing due to drainage from his sinuses. Most likely that's due to the recent burst of flowering stuff following all the warm weather we've had--not evident today, obviously, with all the rain we're having!
At one point, Betsy put a marker pen in Ross's right hand. He looked at it, then proceeded to make some small marks on the page. She repeated the process with his left hand, and he made some marks with that one as well. Then Betsy wrote down four words and asked Ross questions about them. He nodded his head for yes, and got three of them right. She said the act of "nodding" was very quick and assured, quite a change from the slower movements he's been making.
One of the words Betsy wrote was "Ross." She said Ross moved his hand very slightly to acknowledge he recognized it.
He also spent time on the pedals, holding his handle bars. Betsy said he's doing really well and only needs a small amount of help to keep them moving. When he got stuck, he'd back pedal to build up speed and then move forward. Betsy said, "I saw him trying to remember." She reminded me that Ross had such a horrible bang on his head and suffered so much injury, that he is still "rewiring." His accomplishments so far, considering his injury, are amazing.
Thank you so much for your continuing support, your prayers and healing thoughts. You are all very much a part of Ross's recovery.
February 15, 2004 9:30 PM--Talked to Ross's dad tonight. Rusty said Ross had a really good weekend. He's doing well in all areas and has obviously regained whatever he'd lost from his seizures. He was alert and attentive, and he'd had a visit from sister Ariel, who gave him a hair cut. As Rusty said, Ross no longer looked like a straggly college kid...he's regained his "young athlete" persona! Dr. Adams, the chiropratic neurologist who has been seeing Ross, made a visit today. He sees Ross every couple of months and said there was noticeable improvement in many different areas. He is more balanced bilaterally, his eyes are focusing better and it's obvious there is more healing going on.
Rusty said that Ross was able to eat applesauce without a problem and also had some honey out of "honey sticks," which he really likes. All in all, he is continuing to show a lot of improvement.
Thank you, everyone, for your continuing support, for your prayers and good wishes.
February 12, 2004 9:15 PM--Betsy said they met with one of Ross's therapists tonight, Jeremy, to work out a schedule in order to time his more structured therapy. Ross is doing really well, but there just aren't enough hours in the day to do everything they want to with him! He had a great session on the tilt table, is tracking well and his left eye is finally coordinating with his right, something he's had trouble with since the seizure. He's doing really well, but as Betsy said, she wishes she could just wave a magic wand and get rid of the coughing, make him talk, make him well. It's such a long, slow process, but at least Ross continues to improve.
So much of that is due to the continuing support of all of you. Thank you for your prayers and your healing thoughts, and also for your words of encouragement. It means so much to everyone.
February 11, 2004 9:30 PM--Just a brief update to let you know that Ross had a good day, though he did get a bit frustrated with his therapy. When Betsy and I talked, we both thought it might be that people who work with Ross don't always take the time to tell him why they want him to do certain things. He's a terribly intelligent young man, and I can't imagine him doing anything without a darned good reason! Betsy said Jeremiah took him outside for a bit, but he got real congested from all the pollen in the air. Hard to believe that spring is already coming to northern California, but the acacia trees are blooming along with the almond trees, daffodils and narcissus and a whole lot of other sweet smelling things. In the meantime, I want to thank everyone, for your prayers, your healing thoughts and your support.
February 10, 2004 10:00 PM--Ross had another good day, according to Betsy. They had him on the tilt table early. Jeremy has been loosening the straps holding him against it, so his upper body had to do more balancing and he's doing fine. It forces him into more "trunk control." Jeremiah took him outside to enjoy this gorgeous Spring-like weather, although Betsy said Ross's allergies are giving him a lot of congestion. Just in the past couple days of warm weather, the acacia trees are blooming, almond trees, and all kinds of flowers and shrubs. When the seasons change, here, they do it dramatically!
Ross had more applesauce and is swallowing really well. The speech therapist is helping him work his tongue and jaw, and Betsy said he seems really close to vocalizing. Another thing he's showing improvement on is the pedals. Today Betsy, on the therapist's suggestion, played a CD that Ross used to listen to when he trained. It's real loud rap music with a strong beat. Betsy said he definitely responded to it today and was doing the pedals almost entirely under his own strength. He really got into it.
Betsy said he is close to doing them completely on his own, and seems really close to attempting speech. I am just so tickled with the progress he's making. So many specialists told Ross's parents that if he didn't respond in the first couple weeks after his injury, not to expect any improvement at all. Every day he shows us just a little bit more. It's truly amazing. Believe me, all of us know how much we owe you, his support group. Your prayers and healing thoughts are evident in every step of Ross's recovery. There really is no way to thank you enough.
February 9, 2004 10:30 PM--Betsy said Ross had a pretty good day. The physical therapist was able to get him sitting up on the side of his bed by herself, which means Ross had to be able to help her quite a bit to get himself in position. The speech therapist said he was moving his mouth and tongue really well, all a prelude to speech. When he worked on the pedals, he was pushing on his own with only a little help from Jeremiah as far as keeping his left foot on the pedal. Betsy said they got out Ariel's old gymnastics ball and put it on the bed, and Ross spent a lot of time moving it around with his foot. When they put him on his stomach, he was moving his legs really well and was very active.
Every night, I go back and reread what I've written, looking for typos (and yes, I imagine I miss a lot, but it's usually the end of a long day by the time I'm writing this!) and sometimes I am struck by how small and insignificant Ross's daily achievements seem. Then I think about where he was a year ago, a month ago...sometimes even days ago, and I realize how far he is coming, how great is his achievement, and what an amazing support group he has.
Thank you, all of you, for sticking with Ross throughout this long and arduous recovery. You are truly an amazing group of people.
February 8, 2004 10:20 PM--I apologize for not posting before now, but was away all weekend. Just talked to Betsy and she said the team meeting with Ross's therapists was absolutely fabulous. They got together without any politics or agendas other than what was the best for Ross. They discussed the original agenda for his care, and how they could change things to better accommodate his abilities now. A doctor who is a cyclist had called Betsy about visiting Ross, and was able to be there for the meeting, which was wonderful as he was able to give his perspective as well as some excellent suggestions.
Their main goals now are to find a neurologist who is willing to work with Ross, and also to straighten out the medications he is taking in order to avoid further seizures. He may need to be hospitalized at some future date so that doctors can monitor him while trying out some of the newer medications now available. As Betsy said, Ross really hasn't had a good chance at rehab while in such strong physical condition, but it's hard to imagine a situation better than what he is getting at home. The big difference would be the chance to work with new medications in a hospital environment.
One other thing Betsy mentioned is that Ross was very vocal last night, making lots of sounds that could have been words. His attendant was sure he heard Ross say "yes" a couple of times, and Betsy said he's obviously trying to make words when he moves his mouth and vocalizes.
Thank you for your continuing support of Ross and his loved ones. You can't possibly imagine how much you are appreciated.
February 5, 2004 8:45 PM--Note from Betsy: At 8:45 PM Ross had another big seizure--about 4minutes long. Ask people to pray that we can find a way to stop these frequent seizures.
Betsy
February 5, 2004 8:30 PM--Betsy said Ross slept really well last night but was toney most of today. She's not sure why his muscles were so tense, but thinks it may have something to do with his allergies. Lots of stuff is starting to bloom, and he's always had a tough time in the early Spring. He was coughing a lot during the day, but did manage to eat some more applesauce.
Tomorrow night the Dillons are holding a "team meeting" for all of Ross's therapists and caregivers. It's a chance to discuss the various therapies they're using, to determine their immediate and long term goals, and share information.
If you haven't read Ross's guestbook lately, please stop by and take a look. There's a very nice note from Jenna Prewitt--Jenna was seriously hurt shortly after Ross's accident, suffering similar serious injuries to her brain. She's made a most remarkable recovery, and whenever I read one of her wonderful notes, it gives me that much more hope for Ross's recovery.
Thank you, everyone, for your continuing support for Ross and his loved ones. You can't possibly imagine how important your are to his recovery.
February 4, 2004 9:00 PM--Betsy had to be away on business part of the day so Ross was with his nurse, Lisa, who said he had a really good day and was very alert and aware. This afternoon Betsy gave him about a quarter cup of applesauce which he was able to eat by spoon, and she said he handled it beautifully.
Please keep Ross and his loved ones in your thoughts and prayers. Every step, no matter how small, is a step forward.
February 3, 2004 8:30 PM--Ross didn't sleep much last night because he was congested and coughing, but he still managed to have a pretty good day. Rusty said he had an excellent physical therapy session. Jeremy, his PT, said, "When he's there, he's there," and today Ross was really alert and definitely "there."
When I talked to Betsy, she told me about Ross's visit to an eye doctor today. He had not been seen by either an optometrist or an opthamologist since his accident, and she'd noticed his eyes seemed irritated lately. She took him to their family optometrist just to have him take a look. It was difficult to do any testing as they weren't able to put Ross in the chair where all the machinery is set up, but the doctor was able to look into his eyes and do some minor tests on him. He concluded that Ross is a little nearsighted, something Betsy said he was aware of before the accident, but he also said he couldn't see anything grossly out of order with his eyes. He also told Betsy he'd do some research on a few questions she had. All in all, it was a really good experience. Betsy said the doctor was very flexible in his willingness to work with them and to work around the difficulties of treating a patient who can't answer questions. Betsy also said the entire office staff was just terrific.
This afternoon, Ross worked with the speech therapist and also did some pedaling. Jeremiah held his left knee a bit to stabilize him, but he was able to keep his ankles straight and worked really hard at pedaling. He's definitely getting good movement out of his left leg. Betsy said she's hoping he'll develop the same strength with the right if he keeps working at it.
If you get a chance, check out Ross's guestbook. There was a very nice note there from Jenna Prewitt's mom. Jenna was injured in an auto accident about the same time as Ross was hurt and she is making a very steady recovery. Her mom's note was a reminder to me of how many young people suffer from traumatic brain injuries. Please keep Ross--and Jenna--in your thoughts and prayers.
February 2, 2004 9:15 PM--Just talked to Betsy. We were going over Ross's schedule for today and it wore me out! Their days are so busy. Betsy said Ross had definitely recovered from his seizure and was very alert today. He had physical therapy in the morning, sitting on the side of the bed and balancing without support, working on his stomach and rolling back and forth, sitting at the table and using his arms to support his upper body, then back to bed for a quick rest. He spent some time outside during a break in the weather then worked on the pedals. Jeremiah supported his left ankle a bit but Ross was able to push the pedals and keep his feet aligned. He had another short rest then worked with the speech therapist, did some more pedal work, spent time on the tilt table, had a bath and was headed for bed when I called. Betsy said he's working really hard with his mouth, obviously pushing himself to try and talk. There's not a minute wasted in the day, and everyone sounds exhausted by the time it's over.
Betsy also said they'd received some welcome donations to Ross's fund. His care is terribly expensive, so I want to thank those who are able to donate--it's a tremendous help to Ross and his family, as the therapy and at home care is not all covered by insurance or state aid. All of you are so much appreciated, whether you've helped financially or not. Your prayers are every bit as important and very much appreciated by all of us. Ross is going to beat this. I can't imagine him not coming back, though his recovery has been unbelievably difficult and slow. He's an amazing young man, and that potential is still there and still fighting to return. Thank you so much for staying with him through this long, agonizing journey.
February 1, 2004 9:25 PM--Betsy said Ross had a good day, quiet but really nice. He was awake all day and very alert...as his mom said, he was just fun to be around. When she said that, I couldn't help but think that's how Doug and I used to think of Ross when he'd hang out here with Jon--that he was always fun to have around.
He was able to swallow some applesauce and when I called was doing really well on the tilt table. Betsy said he had a cough, but figures it's most likely allergies. His dad was working with him today on Yes/No responses by shaking his head and he seemed to be doing fairly well. He's getting better using the buzzer Jon built for him, and knows that he needs to lift his finger to make the buzzing stop.
Thank you so much for your continuing support for Ross and his loved ones. Your prayers and healing thoughts are such a huge part of his continuing recovery.
January 30, 2004--Ross had a lot better day today and wasn't nearly as tired. He smiled some this morning, after sleeping well through the night. Betsy said she still has to get up every three hours to turn him, but now that's only on two nights a week, as some very good friends have made a donation to pay for care at night for Ross that lets his mom get some sleep. The Dillons are still really dependent on donations for Ross's care, as therapy, nursing and attendant care are very expensive --very little of it is covered by either insurance or the state.
I talked to Rusty a bit, and he said Ross got mad at him today. Rusty and Ross's nurse, Lisa, were talking about finding balance in life, and Rusty made a quip about Ross going out for a bike ride, and taking such a long time to get back home. Rusty said Ross got really mad at him for his comment, something that implies understanding of a fairly complex set of issues. Just another sign of his ongoing recovery, but an important one.
Thank you, everyone, for your continuing support, your prayers and healing thoughts for Ross and his loved ones.
January 29, 2004 10:50 PM--Ross was still really tired today, probably still recovering from his seizure the other night, but he still did well in therapy and managed to hold his head up for over five minutes unassisted. Worked well with the pedals and is continuing to show improvement.
Betsy said they continue to back off on his Clonazepam with the goal of eventually weaning him from it altogether. Please remember Ross in your thoughts and prayers. Thank you.
January 28, 2004 7:45 PM--Ross was kind of tired today, but still had a good day. Held his head up while on his stomach for over five minutes. He's swallowing well, nodding and/or shaking his head in response to questions, so communication is coming along. Betsy said he looks great and continues to show improvement. She's been giving him applesauce to eat...he had some trouble swallowing it today and she said she could tell he was feeling sort of down because of his "failure." Other days he does just fine with it, but it's a complex set of muscles that allow a person to swallow even semi-solids like applesauce.
Thank you all for your continuing support, your prayers and healing thoughts for Ross's recovery.
January 27, 2004 8:35 PM--When I called tonight, Ross was laughing. Betsy said he laughed off and on all day long. She wonders if it's a result of their backing off a bit on the Clonazepam, which tends to make him a bit dopey. He was awake all night long, or at least every time Betsy checked in on him. She said he was just lying there in bed, his eyes wide open. She said that his mind appears to be clearing and that he's definitely more alert. And laughing. I asked if his laughter sounded the way he did before the accident. Ross always had such an infectious laugh, but both Betsy and Rusty said he sounds more like he did when he was a little boy. That would fit in with many theories of recovery from brain injury, in which the patient essentially has to go through all the same stages from infancy back to adulthood.
Ross also had terrific therapy sessions today and did really well on the pedals. Generally his right ankle tends to turn out, but today he kept both legs and feet in a perfectly neutral position and was pushing with both legs.
Betsy also said that Jeremiah was working with Ross when I called. They are so lucky to have found him--Betsy said Jeremiah is absolutely wonderful with Ross and seems to know exactly what he needs.
I love calling Ross's folks on nights like this! There is so much energy in their voices and I know they've seen even more progress than I manage to get into the update. Even so, I look forward to the day when Ross can give me the nightly report on just how far he has come. At this point, his recovery is little short of amazing. Thank you, everyone, for your steadfast support.
January 26, 2004 9:00 PM--Today Ross received the hand-held buzzer that Jon made for him, and Betsy said he quickly figured out how to "stop" the buzzing...which sounds like a dying cow. I think I'd want to stop it, too! Hopefully, he'll be able to use it to help him communicate.
Ross has been having some very uncomfortable periods in the evening, sweating heavily, some vomiting and generally feeling horrible. Betsy said they finally traced it to withdrawal from one of the drugs he's been on to fight the tone in his muscles and help him sleep at night. Clonazepam is highly addictive and Betsy said they'd been reducing it to try and wean Ross off of it. Even though they were taking it down in very small amounts, it was still too rapid, so they've backed off a bit and will drop him in even smaller increments.
The sad thing is, the drug probably wasn't all that necessary in the first place, as they've discovered melatonin works even better. It's going to take them until September at the slower rate to get Ross completely off the drug.
Betsy said in spite of the discomfort and the problems with his dosage, Ross still is doing really well. They have a device he can pedal, and he worked on it today, pushing especially well with his right leg.
Thank you for your prayers and healing thoughts, for Ross as well as for my husband. He's home and resting tonight and I do appreciate your kind thoughts for his swift recovery.
January 25, 2004 8:35 PM--Ross was tired much of today, which isn't unusual, considering the large seizure he had last night. That always seems to take a lot out of him. He did have a very special visitor today, though. Roger was injured 13 years ago in a serious car accident, but has made a remarkable recovery. Betsy said they talked a lot about attitude and how the people who could accept their injury and look for ways to get past it were the ones who do the best. Those who dwell in the, "Why did this happen to me?" philosophy seem to have a tougher time.
Ross did appear to be experiencing some pain later in the afternoon, so Betsy said they gave him some ibuprofen and he took a long nap. He felt much better when he woke up. This evening, he was alert and almost back to his old self, so he's recovering quickly from the after effects of the seizure.
My husband is having surgery in the morning, so I would ask you to hold the good thought for him as well as for Ross and his loved ones. I look on all of you as a very powerful support group, and hope you don't mind my asking. Thank you.
January 24, 2004 8:40 PM--Ross had a seizure tonight, just before I called. Betsy said it was a big one, lasting about two and a half minutes. They must be so scary for everyone involved, but in the past, whenever Ross has had a seizure, it's been indicative of more improvements and another step up in his recovery. Please keep him in your thoughts and prayers tonight, and his family, as well.
January 23, 2004 8:00 PM--Just a brief update to tell you that Ross had a good day. His nurse Lisa was there most of the day and worked with him. Rusty and Lisa managed to re-arrange Ross's room using some donated book shelves. Betsy said she read to Ross while they did all the furniture moving and such, and she said it looks great. Ross did really well with his therapy, especially swallowing.
Thank you so much for keeping Ross and his loved ones in your thoughts and prayers. He's come so far since his injury.
January 22, 2004 9:00 PM--Betsy said today went well. Physical therapy with Jeremy was really good, with Ross standing completely upright at the tilt table, then sitting in a chair at the dining room table and holding his head up while supporting his weight on his arms on the table. As Betsy said, every day is different, but the progress is always forward. Ross even took some sips of coffee tonight and Betsy said he really seemed to enjoy that.
Our son, Jon, is working on a buzzer built with a computer mouse so that Ross can use it to communicate. Jon called tonight and "played" the sound...the thing sounds like a dying cow...mad cow, maybe?-- something that should appeal to Ross's off beat sense of humor. One of the mouse buttons will vibrate and the other button will make the sound. Jon said it's really easy to make it work, so we're hoping it will give Ross an avenue of communication.
If it does work and if Ross is able to communicate, it can only mean giant steps forward. Please keep him in your thoughts and prayers. Your support has done such amazing things for Ross during this long recovery.
January 21, 2004 8:00 PM--Betsy was talking so fast about all the things Ross did today that it's hard for me to read my notes! Anyway, sounds like he had a wonderful day. He spent time on his stomach and was lifting his head and upper body totally on his own for at least the first two minutes of the four minutes he was up. An hour later the physical therapist arrived and had Ross rolling from his side to his back and also from back to side. He was also sitting on the edge of the bed without support. The therapist said he showed much less tone in his muscles than is usual, though the tone may increase as they are cutting back on some of his medications.
Part of what causes the tension and tone is the patient's inability to sense where his body is. As someone with multiple sclerosis, I can really relate to that. There's a definite "disconnect," which is really troubling when you try to move and find your "place" in space. It's hard to explain, though, since it's something I deal with on a regular basis, I definitely understand what Betsy is describing. As my neurologist so aptly described it, my brain doesn't know where my feet are. In Ross's case, it's probably more like his brain doesn't know where his body is. The constant need to stabilize within an unknown space has got to be totally disconcerting for him. It's amazing he does as well as he does.
Another thing that was new today was the fact Ross ws using his arms, moving up on his elbows to lift his head, and also moving his right leg up to stabilize himself. He's beginning to use a lot of different muscle groups, something that requires more sophisticated messages from the brain. Betsy said another exercise they worked on was to put him in a chair and move him close to a table, where he rested his weight on his arms. So many new things! I get so excited when I talk to Ross's folks every night--there is almost always something new to report, another step he's taken in this long and often frustrating recovery. When he takes as many giant steps as he has this week, though, it's really fun to write my updates!
Thank you so much for your continuing support and your wonderful thoughts and prayers for Ross's recovery.
January 20, 2004 8:30 PM--I talked to Ross's dad, Rusty, tonight, as Betsy was getting some much needed rest. She sounded exhausted last night when I called so I'm really glad she got a nap this evening. Rusty said that Ross had a good night's sleep and Betsy had gotten up early to feed him so that he'd be ready for therapy. He had an excellent therapy session, working on the tilt table and also sitting up on the low bed. That's a great exercise for his upper body, core strength--balancing in an upright position takes a lot of effort, requires many muscles and a lot of mental adjustments for balance. Ross is doing really well.
Later in the day, Rusty said Ross seemed kind of blue and was very tired during speech therapy. We talked about that for awhile, wondering if his awareness of his limited abilities is depressing him, now that he's becoming more alert. It's difficult to say, but would account for a lot of the sadness his parents sense about him.
As tough as it is, though, that awareness is a sign of healing. Please continue to pray for Ross, to think healing thoughts and continue your fantastic support. You are all a very important part of his recovery. Thank you, too, for the wonderful notes you've sent, both privately and to the guestbook. Your comments are truly inspiring.
January 19, 2004 9:20 PM--Just a brief update today. It was a holiday so there was no therapy other than what Betsy and Rusty did with Ross. Betsy said Ross seemed very sad today. She doesn't know why, for sure. There are so many variables, but I know it's got to be so tough for his parents when he has a day like this and can't communicate what he's feeling and thinking. Hopefully, he'll feel better tomorrow.
Thank you for your thoughts and prayers, and for your very kind notes of support. It means so much to Ross and his loved ones, especially now, after so many long months. You're all amazing, to continue to be here throughout Ross's recovery.
January 18, 2004 8:45 PM--Talked to Betsy and she said it was a busy weekend, though Ross seemed sort of blue for much of it. Much of that is probably due to increasing awareness--as Betsy said, there's a lot for him to be sad about. While so many of us can see what he has regained since his accident, he's going to see it from the perspective of what he's lost. It must be horribly frustrating for him.
Betsy said she got out the hacky sack ball and played it with Ross for awhile, placing it on his right hand. He was able to toss it off at least a dozen times. She also used the little rubber frog that Ariel gave him for Christmas. She'd put it on his knee and he was working really hard at balancing it there when he moved his leg. They're constantly looking for things to get Ross interested and participating. Company is always good, and it's really good when his friends come by to see him.
Betsy said he's looking really good, very healthy and alert. He really reacts positively when Katie comes by. She had to work late Saturday, but was able to be there today.
Please remember Ross in your thoughts and prayers, and if you can make it by to visit, check with his folks and find a convenient time for a visit. You never know when someone he's ridden with or been friends with will be the spark that helps him break through. If you're on a ride over the Oakville Grade, you're going right by Ross's house. I've checked with his folks and they said Ross really responds well to visits from his friends. If you want to visit, just email Betsy ahead of time at [email protected]. Thank you so much for your continuing support.
January 15, 2004 8:15 PM--Just a brief update tonight to let you know that Ross had a really good day. He had a doctor's appointment with the doctor in Sonoma for a check up and chest x-ray (routine only, no problems) and excellent sessions with speech therapy and on the tilt table. Betsy said she feels as if he is so alert now, so aware, that it's only a matter of time before he starts talking.
I know exactly what she's talking about. When you look at Ross, you know he's aware and so close to making a breakthrough. Please remember how far Ross has come and how far he still has to go, keep him in your prayers and your thoughts, and thank you, all of you, for staying with him through this long recovery.
January 14, 2004 10:00 PM--Betsy said today went well and Ross was feeling better. He spent some time on his stomach and held his head up a couple of times for a few minutes, but the really neat thing is that he moved his right knee forward to help brace himself so that he could raise his head. This is a totally independent movement and something he hasn't done before. He also had a massage today and obviously enjoyed it. A couple of his friends from grade school stopped by to visit. Betsy said Ross was very attentive and she wished she knew what he was thinking while they all sat and talked about old friends all of them knew. He also had a good speech therapy session, so it was definitely a good day.
Please remember Ross in your thoughts and prayers. Your support is extremely important to his continuing recovery.
January 13, 2004 8:15 PM--Ross was fairly tired and tense today, but he still appeared to be working on his speech therapy exercises even after the therapist left. Betsy said Ross hasn't been able to move his tongue beyond his teeth since he was injured. Whether the cause is neurological, from the brain injury, or possibly a result of scar tissue from the trach, whatever the reason, something has affected his ability to move his tongue. In order to speak and eat, he needs to regain control, and he can now push his tongue out past his teeth. He is having to relearn a lot of movements, and using his tongue is one of them. Betsy said he often continues to do his exercises now on his own.
We were discussing how far Ross has come, and Betsy said that sometimes, Ross will look at her with such a sense of longing, as if he knows how badly he is injured and how far he still has to go. I can't help but think how frustrating this must be for him, but then I go back in the website and read where he was just a few months ago, and realize what remarkable progress he is making.
Thank you so much for your continuing support, your prayers and your healing thoughts for Ross and his recovery.
January 12, 2004 8:30 PM--Betsy said Ross was a little tired today, though he did well in both speech therapy and physical therapy. The PT worked with having him sit on the side of the bed, and he's able to balance really well now with minimal support. It requires his ability to shift his weight and balance from side to side, something he's still relearning. He's also rolling from his side to his back and doing most of the move on his own.
Tonight when he was on the tilt table, Betsy said he appeared to be having some difficulty. After a few unsuccessful exercises, Betsy asked him, "Are you mad." He shook his head. Then she asked, "Are you sad?" and he didn't answer. During his exercises, she said he seemed really frustrated, and when they started unstrapping him to take him down from the tilt table, Betsy said they realized the strap holding his legs was too tight and had been abrading the skin. She said she realized then that he was aware he was hurting but had no way to tell them. As frustrating as this must be, it's probably the sort of thing that will eventually force Ross into communicating.
I just went back and looked at the website updates from a year ago. It's amazing how far Ross has come, and shows great promise for the future. It's as if he is so close to breaking through...thank you, everyone, for your thoughts and prayers and our amazing support for Ross and his loved ones.
January 11, 2004 6:45 PM--Just talked to Betsy and it sounds as if Ross had a terrific weekend. The growth and healing is coming in leaps and bounds, now, with so many improvements. It's really exciting. On Friday Ross's speech therapist started working with the Yes/No cards, asking Ross to look at specific cards. He did five and Ross got three of them correct. He's not going to start charting it until they work up to ten drills, but for the first time, this was really great.
On Saturday, Lisa, Ross's nurse, brought her dog Ginger over with her. Ginger is a chihuahua who loves to play with Ross's dog Josephine, who is a chocolate lab/Chesapeake Bay retriever cross. The play together really well (something I have a difficult time picturing...) and Ross really enjoys watching them.
Betsy said they got Ross on his stomach to relax him and he initiated raising his head, actually moving his right hand out to the side to help support himself. He held his head up without support, at one point holding the position for five minutes.
Another exercise they're doing with Ross is having him look in different directions while he's on the tilt table. He's belted under his arms for support, but it gives him a lot of freedom to move his shoulders and head. He's looking up and around in whatever direction he's directed to look, and doing really well.
Betsy said today went just as well, including a few turns around the driveway in his wheelchair when it was warm out.
Every time I call, it seems that Ross has shown more progress. He's definitely healing and, though it's a long, slow road, recovering. Thank you, everyone, for your continuing support for Ross and his loved ones.
January 8, 2004, 10:20 PM--Sorry for such a late update--I'm trying to meet a book deadline and lost track of time! Just talked to Ross's parents and they said he had a really good day. He was a little tense during the day but fine tonight. His speech therapist said Ross's sessions yesterday and today were his best ever. Betsy said she also noticed Ross doing some of his mouth exercises on his own early in the day. He had a small seizure this evening, but Betsy said there were all there with him and he handled it well. She said she wonders if the seizures might not be triggered by his recovery--the fact that, as his brain's wiring heals, there is more and more energy pulsing through his nervous system. Totally unscientific, but sounds sensible! Ross remained very alert throughout the seizure, which consisted mostly of his eyes blinking rapidly and a bit of tremor in his hands.
He was completely upright on the tilt table again tonight, with his feet flat on the floor, and the therapist had Ross following with his eyes, to the point where Ross even bent over at the waist and then straightened back up. He's looking down and diagonally and righting himself. The therapist said it's all a sign of his vestibular integration returning--the ability of eyes, brain and the balance center in his ears beginning to work together again. In my mind, I tend to think of it as his internal gyroscope getting back into working order.
My next update will be Sunday night. Thank you so much for your continuing prayers and healing thoughts for Ross and his family.
January 7, 2004 9:00 PM--Not too much to report tonight. Ross seemed tired today, probably because he worked so hard yesterday! Betsy did say he woke up from a nap around nine this morning, smiling and laughing. He had a great speech therapy session, and when I called he was sitting at the dinner table while the family ate, looking very alert and watching everything. Betsy said there were a few instances today where he did seem very upset, but she is convinced that is part of his awareness of his condition. Hopefully, that awareness will help drive his recovery.
Thank you so much for your continuing prayers and support.
January 6, 2004 8:20 PM--Just talked to both Betsy and Rusty and they said Ross really had a productive day today. Rusty said he had an amazing session on the tilt table. Rusty and Jeremiah had Ross completely vertical with all his weight on his feet. He held himself very straight and was extremely alert, following Jeremiah about the room by turning his head and moving his eyes, tracking really well. Betsy worked with him this morning when she and Jeremiah put him on his stomach and he was able to lift his head and hold it, though he didn't do the "marathon" type lift of the other day. Still, he's starting each morning with a strong base from the day before, so each day he is able to show improvement. As Betsy said, "The more we do, the more alert he becomes." She said she fully believes that he would still be in more of a "twilight" existence if it weren't for the constant stimulation of therapy, but so long as they can continue working with him and he continues to add more skills as each day unfolds, his recovery will continue.
Betsy said they constantly remind Ross how well he is doing, praise how hard he is working, and remind him that God has a plan for him. Then Betsy said they remind him he's doing intervals all the time, and his training is really important. His is truly an amazing story, but no more amazing than the tenacious group of people who have followed his recovery and are praying for him and offering their support. Thank you, all of you, for staying with Ross's team.
January 5, 2004 8:45 PM--I just talked to Betsy and it sounds as if Ross had a terrific day today. Started out with physical therapy and work rolling from his back to his side and sitting on the edge of the bed. The therapist said that Ross is putting out about two thirds of the effort it takes for him to roll, which is really great. It shouldn't be too much longer before he can do it on his own. He's also balancing quite well with minimal support while sitting on the side of the bed. Betsy said that once he's got his feet properly positioned, he's doing really well holding himself erect.
He also spent time on his stomach and had an excellent speech therapy session today. Betsy said she went out to run some errands while he was napping, but the therapist with him when he awoke said he woke up laughing. I would love to know what he's dreaming! All in all, it was a really good, productive day, and a pretty terrific way to start out the new year.
If you are considering sending a taped greeting for the video Melanie and Jon are making for Ross, please do so asap. The address to contact Melanie is at the top of this page.
Thank you all so much for your continuing prayers and support of Ross and his loved ones. You are the most amazing support group ever!
January 4, 2004 9:00 PM--I'm back from a few days off and just talked to Betsy. Ross is doing so well! Betsy said she'd been reading to him--a series of books called "The Mitford Series" about an Episcopal priest in a little town in N. Carolina, by Jan Karon. Ross really seems to be enjoying the stories.
Ross is still really congested and Betsy said they decided to start putting him on his stomach without the wedge under him. He seems to absolutely love it! He just totally relaxes and enjoys himself. Betsy said they did it twice yesterday.
Tonight he was sitting in his chair and they got his right arm to relax and rest on the arm rest. Usually that arm is drawn up tightly to his chest, so it's a pretty big deal when he can totally relax it. Betsy said she also put a glass in his hand and he held it.
According to his mom, everything about Ross is encouraging. He's sitting straighter, his back is straight, he is more relaxed and very alert. I occasionally look back through the site and see how terribly injured he was, and how far he has come, and it makes me realize that he is truly on his way to a full recovery. Thank you, everyone, for your faith in Ross's will to come back, for your unfailing belief in miracles, and for your constant and heartfelt prayers for his recovery. It's all working.
December 31, 2003 11:20 AM--It's my last update for the year, and it's so amazing to realize how far Ross has come. I had a call from Rusty telling me they'd received the latest results of Ross's CT scan and the doctor said the ventricles in his brain, though still larger than they should be, show significant improvement since his last scan in May. They are substantially smaller and definitely showing signs of healing.
Betsy said Ross is continuing to do well. He moves his feet easily into position on the tilt table, does well on his stomach at raising his head, turning it in both directions, occasionally rubbing his face on the bedding, holding his head up for long periods of time. His physical therapist is now working with him on turning from his back to his side, a much more difficult movement than from side to back, and he's able to accomplish it with some coaching.
Another neat thing--when his caregivers, Jeremiah and Eleanor, were bathing him, Jeremiah was teasing Ross with a small plastic frog Ross had gotten from his sister Ariel for Christmas. Betsy said Ross was laughing out loud, the first time his laughter has been an immediate response to a specific act, responding appropriately in the "here and now."
All in all, it's been a pretty momentous year, and I can't help but wonder just what amazing things lie ahead for Ross. He's doing so much better than his doctors ever expected. His family and friends, however, have never doubted he would recover. Thank you for your unwavering support, for your prayers and healing thoughts. You are all a wonderful part of his ongoing recovery.
Our best wishes to all of you for a healthy, happy new year.
December 28, 2003 11:00 PM--Talked to Betsy earlier and she said that Ross had a good day. His friends Jon and Melanie Moore stopped by to visit, and he was definitely watching them, especially Jon. Also, when Betsy was working with him during therapy and would give him instructions, it was obvious he was doing his very best to follow directions.
Ross has gained so much this past year. If you go back and read some of the older posts in the website, it's really amazing to see just how much he's grown.
Thank you, everyone, for your daily prayers for Ross and for your healing thoughts. I may not be updating a lot this week as our schedule is really hectic, but I want to thank all of you for being a part of Ross's team.
December 27, 2003 10:50 PM--Ross had a good day today, with a good session on the tilt table and also holding his head up from a position on his stomach. He continues to show improvement on a daily basis. If it seems at all slow, go back and read the posts from a few months back and you'll see how far he's come.
Ross continues to improve. He couldn't do it without your support. Thank you so much.
December 26, 2003 8:45 PM--Betsy said they still had a houseful most of the day, all people who have known Ross for most of his life. She said he watched everyone very intently, especially at dinner last night. Today he did really well, was able to lift his head while on his stomach and hold the position for three minutes, two seconds the first time, three minutes twenty-three seconds the second time. He did this on his own, without being instructed to lift.
Katie arrived for the weekend, and Betsy said Ross really watches her. At one point, Betsy said she thought he might be getting tired and asked if he wanted to go to bed, but he shook his head "no." His communication skills are definitely improving.
Please remember Ross and his loved ones in your thoughts and prayers, and be extra careful if you travel this holiday season. Traffic is horrible! Be safe.
December 25, 2003 9:45 PM--Merry Christmas to all of you! The Dillons had 14 at their table tonight, including Ross, for a very enjoyable Christmas dinner. I just talked to Betsy and she said Ross paid attention to all the activity and was interested in the gifts in his stocking. He had a great session on the tilt table, as well. Therapy goes on, holiday or not.
We want to wish all of you the very best this holiday season. Thank you so much for keeping Ross in your thoughts and prayers--and in your lives. Have a safe and joyous holiday and all the very best in the new year.
December 24, 2003 9:30 PM--Betsy said Ross had a terrific day. He was on his stomach and held his head up for seven minutes, three seconds, then after a brief rest held his head up again for about thirty seconds without any encouragement or orders to do so.
He took a nap this afternoon and when he work up, he stretched and started laughing. He also had a good session on the tilt table.
This is indeed the season for miracles. Please, if you pray, pray for Ross, for his recovery and for a wonderful year ahead for him in 2004.
December 23, 2003 9:15 PM--Talked to Rusty tonight and it sounds as if Ross had a really full day. Physical therapy in the morning, and he's sitting up on the side of the bed, holding his head up and looking around, keeping himself upright with no problem so that, as Rusty said, they just "expect" him to do it. This is such an amazing sign of progress! He also had a trip into Marin today for a CT scan to check on the shunt. All is fine and he handled the trip well, though Rusty said he was pretty tired by the time they got home again. Rusty said that when he travels he is very aware of his surroundings and seems to pay attention to all the activity outside the van, a huge difference from just a few months ago. A year ago, his family was thrilled when he was able to respond by occasionally moving his head and tracking...now that is behavior they expect from him. It's been a pretty amazing year.
Thank you so much for your continuing support, for your prayers and healing thoughts for Ross and his family.
December 21, 2003 9:00 PM--Just a brief update to say that Ross is doing well, he's having excellent sessions on the tilt table and is very alert. He's also vocalizing more, making sounds, though not yet able to say words. He's had a second visit from a chiropractic neurologist who offered some suggestions using the tilt table--turning it (it's on wheels) while Ross is on it, a quarter turn at a time.
Your continuing prayers and support are so important to Ross and his loved ones. Thank you so much for thinking of him, and for keeping him in your prayers.
December 18, 2003 9:45 PM--Ross had a really good day. Betsy said he did well on the tilt table. He was up for about an hour and Jeremy, his therapist, worked on his right arm and hand a lot. Betsy said it's definitely helping, as Ross is now holding his hand in a normal position, rather than drawn up to his chest. He's also scanning well, following the people in his room as they move around. His therapist said he actually needs more challenges at this point, so I imagine they'll come up with something!
One new thing: Betsy has been in communication with a reader from the list who suggested grapefruit seed extract for some of Ross's problems with drainage and congestion. Betsy found a spray at the local health food store and tried it on Ross, and in just a day and a half his congestion is clearing and the white coating he's had on his tongue is gone. Thanks, Caroline! We have learned so much from our readers...it's absolutely amazing.
Thank you, everyone, for you kind thoughts and healing prayers for Ross and his loved ones. Also for your most helpful advice!
December 17, 2003 8:45 PM--Just a brief update to let you know that Ross had a good day. Held his head up for 5 minutes, 35 seconds while on his stomach and had an excellent session on the tilt table. Betsy said they intend to work more with him sitting on the edge of the bed after the holidays. That exercise requires more balance and Ross's active participation, whereas the tilt table tends to be a more passive exercise.
I asked Betsy how Ross was doing at moving himself while in bed. She said that when she turns him, he usually extends his left leg, which he did when she got him settled last night. However, when she went in to turn him about three hours later, he'd not only drawn his left leg up close to his body, but also turned over more on his side. May not sound like a lot, but it's a huge difference from what he could do just weeks ago. He's growing stronger and showing constant improvement. Lots of small steps, but forward steps just the same.
Thank you so much for thinking of Ross this holiday season. We appreciate your healing thoughts and prayers, and your support more than you can possibly imagine.
December 15, 2003 9:10 PM--Betsy said Ross did really well this morning, but he had a petit mal seizure this afternoon while on the tilt table. It wasn't too bad--lasted only about a minute and a half--but still, it's unsettling. However, Betsy said the seizures seem to happen when Ross has been showing a lot of advances, as if more connections are being made and more healing is taking place, so they really might, in some ways, be a positive sign. Possibly intense effort triggers a seizure? It's amazing how little is still known about the human mind.
Thank you so much for continuing to follow Ross's recovery, for your prayers and support and healing thoughts for Ross and his loved ones. This time of year, especially, when everyone is so stressed out and busy, your kindness and concern are really important to all of us. Thank you, too, for your kind notes and wonderful suggestions. Betsy has said on more than one occasion how much she has learned from the people who read Ross's story. You are all very much appreciated.
December 14, 2003 8:20 PM--Talked to Betsy a bit ago and she said Ross is doing well. He held his head up while on his stomach for almost five minutes, even though he was still tired from his 9 1/2 minute time on Thursday, he's having terrific sessions on the tilt table and doing well with mouth exercises that help him control tongue and mouth movement.
This time of year, everyone is so busy with holidays and life in general, and I wanted to take the time to thank all of you who remain so supportive of Ross and his loved ones. You mean so much to his ongoing recovery. Thank you for your healing thoughts and prayers, and for your most steadfast perseverance. There's a lot to be said for a really super stubborn support group! Thank you.
December 11, 2003 8:30 PM--Got this really cool email from Betsy this morning:
"This morning, Jeremiah and I put Ross on his stomach, had Ross tell us when he was ready to start by lifting his head, and started the timer when we started the exercise. Ross held his head up for 9 minutes, 34 seconds. After a break, I told him it was his choice whether to try again, since he had done an amazing job the first time. He held his head up for 2 minutes, 15 seconds the second time. That is our guy!!!
Betsy"
When I called this evening, Betsy said she hadn't expected Ross to do well because he'd had such a tough week, so both she and the therapist were surprised at how long he held himself up. The most incredible thing, according to Betsy, is the fact that Ross appears to be aware how well he's done in the past, and keeps trying to "beat his time." Every time they do this therapy, he goes a bit farther.
Thank you, all of you, for your constant and unwavering support. Some of you have been a part of "Team Ross" for over a year and a half now, many of you found the website at a later date, or didn't hear about Ross's injuries right away, but all of you contribute to the energy and the power that helps him. There is no way to adequately express how important you are to Ross's recovery. Your prayers, your healing thoughts, your kind messages as well as your support are helping him along this most amazing journey. Thank you.
December 10, 2003 9:10 PM--Betsy said Ross had an "okay" day...he was tired--most likely still feeling the effects of his seizure the other night. He did, however, have excellent therapy sessions with both the speech pathologist and the physical therapist who had him sitting up on the edge of a futon, unassisted, today. He's regaining so many of the motor skills we all take for granted, but each small improvement is a huge step forward in Ross's recovery.
December 9, 2003 9:00 PM--Betsy thought Ross might be fighting a stomach bug as he seemed kind of uncomfortable this morning, but they still managed to get to the hospital at Sonoma Valley for his monthly blood work and check up. He did well with physical therapy, and Betsy said they'd heard from the chiropractic neurologist who was very excited about Ross's progress so far. Lots of positives for him, which is always good news.
Thank you so much, everyone, for your healing thoughts and prayers for Ross and his loved ones. You are very much a part of his recovery.
December 8, 2003 9:30 PM--Last night, after I talked with Betsy, Ross had a pretty severe seizure. It lasted about 4 1/2 minutes, but at least he didn't seem to suffer any lasting effects from it. He was really tired today, but otherwise okay. Betsy said the seizures always seem to occur after a really eventful day, or before something special. Maybe they're a sign of the healing that's taking place. It's so hard to know. He's very alert and his mouth movements are really good, but he's still got so far to go.
Thank you so much for you thoughts and prayers and especially for you really kind notes. They are really important to Ross and his family.
December 7, 2003 5:35 PM--I just returned home after a weekend away and downloaded the first pictures of Ross laughing since he was hurt. Those of you who knew Ross before his accident know that laughter was as much a part of him as breathing. Rusty took these photos today when Ross woke up from his nap and began to laugh. Betsy said they know it was "interactive," because when she and Rusty laughed, Ross laughed even more.
He's had such a good week, with excellent sessions on the tilt table, stretching and rolling, working with his various therapists, but I imagine there's not much that could have made his family happier than to hear Ross's laughter again.
Two years ago, on June 3, 2002, our lives were turned upside down when a car ran down our son Ross while he was riding his bicycle. Ross has blessed our lives for twenty-seven years. The first twenty-five years he blessed us with a quick mind, a happy smile and a loving nature. In the last two years, he has shown us perseverance, hard work, an indomitable spirit and a deep reservoir of patience in the face of horrific obstacles.
From the beginning, all of you—family, old friends, new friends—have been a rock of support and encouragement for all of us: Ross, our family and Katie. There were many days when your supportive messages were the emotional balm we used to endure another day of heartache and despair. You have provided material things that our therapists thought would help and you have sent donations that have provided for the many hours of therapy and care givers. Ross is still a total care patient and requires constant help and attention. The journey is not over. The good news is that Ross is making steady progress each day, and we believe he will recover more and more function over time. Please hang in there with us. Please continue to pray for Ross. While this journey is heartbreaking, it is also a privilege.
Rusty and Betsy Dillon
Ross’s proud parents
June 2, 2004 9:00 PM--I called Betsy tonight for the regular update. Ross had a good day, though he's been more tired than usual. It could be the drugs, or it could be one of his plateaus where he is getting ready for a jump in abilities. We obviously are all hoping for the latter. Anyway, while I was talking to Ross's mom, I couldn't help but think of Ross as he was two years ago tonight. He'd graduated cum laude from Santa Clara University, he'd been accepted to Boston School of Law, he was due to marry Katie in a few weeks...life couldn't have looked better to this exceptionally talented and handsome young man. All of that changed in a heartbeat--a moment of inattention by a driver, a bit of fate that put Ross on his bicycle on that particular stretch of road near Occidental on a beautiful June day.
More than just Ross's life changed that day. His parents, his sisters, his friends, his fiancée, his co-workers...all the people who interacted with Ross Dillon on a regular basis, who knew this funny, smart, athletic, wonderfully witty guy, suddenly found themselves caught between mourning his loss and celebrating the fact he was still alive.
Now, two years later, he is not only alive, he's proving the doctors who predicted he wouldn't last the night on June 3, 2002, that he's made of pretty tough stuff. He's regaining more of himself every day, though sometimes his improvements are so small, so minimal, that it's difficult for those of us who don't witness his amazing stuggle on a daily basis to realize just how very much he has gained. It only takes a minute to go back on this site and read what he was doing a few months ago, a year ago, to realize Ross has never lost his determination, his will to survive, his competitive spirit.
Obviously, he hasn't made this progress on his own. Ross has an amazing family willing to fight every step of the way to see him once more as the young man he was, people who would never even consider giving up this arduous struggle. He has caretakers who obviously love him and want his success, he has medical professionals who have offered support and information outside of the traditional medical community, and he has all of you, the folks who knew him before his accident and want the young man who was so special to come back into their lives, or those of you who have found him online and only know him through his daily updates. Your prayers give Ross and his loved ones strength, your notes of support and your healing thoughts are part of the powerful effort going into Ross's recovery.
I can't believe it's been two years since Ross was first injured. I can still remember his dad's phone call to us, late at night, telling us how badly Ross was hurt. I don't think any of us believed Ross would make it through the night. Thank goodness we were wrong.
June 1, 2004 9:45 PM--Ross had a long day. Busy and very tiring, but Rusty said it was still a good day and a lot was accomplished, including time with the acupuncturist. Ross's doctors are currently increasing his Keppra (anti-seizure meds) for a few weeks while he's still on the Tegratol, and then intend to reduce the Tegratol before removing it altogether, so Ross will probably feel fairly sedated during the period where the dosages are over-riding one another. Hopefully, he'll be off the Tegratol in a few weeks and the dosage of Keppra will be reduced to a comfortable level for him. So much of his recovery is based on the balance of the medications that determine his brain activity--because of his injuries, Ross is prone to seizures, but the seizure medications tend to sedate him to the point where progress becomes very difficult. Hopefully, removing the Tegratol and limiting him to the Keppra will control Ross's seizures and still leave him alert enough to work on his therapy. Please keep Ross in your thoughts and prayers. Changing meds is always a tricky proposition, and he does respond to your healing thoughts. Believe me...in the almost two years I've been doing Ross's website, I've seen things occur I never would have believed possible, and it's because of all of you, your support, your prayers and unwavering dedication. Thank you so much.
May 31, 2004 9:45 PM--We're just home from a long weekend away, so I'm going to post an email Betsy sent to me today with Ross's update:
"Ross is doing well, eating chunkier food and sipping unthickened fluids through a crazy straw. He seems to be trying to talk and he really watched John and Mel when they were here. He continues to kick the ball with his right foot, and also move the ball from the side with his foot.
"The most exciting and new thing is that he is sitting on the side of the bed, shifting weight (usually to eat ice cream), with minimal support. Actually, Jeremiah is behind him, but not touching him, so that Ross doesn't fall backwards. The therapists are now teaching us to make transfers without the lift. Ross's right foot can now be flat on the floor, and if he is leaning forward, his stomach muscles and the movement of his head (facilitated by reaching to food) keps him balanced.
"He is also using his charcoal pencil (with the help of special rubber tubing to make it bigger in diameter) to doodle."
Betsy
Thanks to all of you for your support and prayers for Ross and his loved ones.
May 26, 2004 9:30 PM--Betsy said things were going well today. Ross did just great this afternoon. Lisa, the nurse, had him sitting on the side of the bed with very little support for a full twenty minutes. She also worked with Ross on the floor mat and he rolled over completely on his own. The Dillons had visitors today, very old friends they' ve known forever, and Ross was definitely interested in them and paying attention to the conversation. He's also eating really well, moving food around with his tongue and improving daily.
Thank you so much for your continuing presence in Ross's life. You mean a great deal to him during this long recovery.
May 25, 2004 9:40 PM--Betsy said Ross was doing great today, in spite of a possible petit mal seizure earlier this evening. He's been having seizures--usually much more intense--about the same time every month, between the 23rd and 25th. Betsy said this one was so minor, though, they're not even sure it WAS a seizure, though they were definitely watching for them. His anti-seizure meds have been increased and might account for the smaller event.
Last night Ross made his presence known--Betsy said he yelled really loud, and it appeared it was just to get their attention. He was alone in his bedroom at the time, and the yell was definitely a verbal command for someone to come in "right now."
Betsy bought a wooden alphabet puzzle and was using it with Ross, spelling out his name and moving the letters around. Jeremiah also worked with him with the puzzle, and he definitely seemed interested. When spelling Ross's name, Besty asked where the "O" was, and Ross moved it with his hand. He also was making marks with a pencil and paper today and appeared to be watching what he was doing.
He's receptive to following instructions and is very much a part of his daily routine. Betsy said he shows improvement almost daily, though it's obvious he still has a long way to come. Thank you, everyone, for your continuing support, your healing thoughts and prayers for Ross's continuing recovery. He still has a long way to go, but he has come so very far.
May 24, 2004 10:00 PM--Ross had a pretty good day today. Had an 11:00 appointment with his chiropractic neurologist then back home to therapy and work on the pedals. Betsy said she bought a child's toy, a set that included a bat and balls and Velcro gloves to help catch. She put the Velcro disk on Ross's right hand and he was definitely moving his hand to try and catch the ball. Betsy also put a pencil in his hand and left him to doodle with it. She said he was making very finely controlled lines on the paper, and drawing on his own after she left. Ross seemed sort of down today, but Betsy said that if they give him a task he works to complete it and gets really involved in what he's doing.
Thank you, everyone, for your healing thoughts and prayers for Ross and his loved ones.
May 23, 2004 10:20 PM--I called and talked to Betsy tonight to get the update, and then she called me back to tell me Ross was able to drink through a "crazy straw!" It's a big step...he'd just graduated to a longer, narrower straw today, and Betsy decided to try the crazy straw on him and he handled it just great! It requires a lot more "suction" and more coordination, something Ross is getting better at by the day. He's sitting up on the side of his bed now and eating, which means he has to deal with balance as well as getting the food to his mouth. He's taking all his medications by mouth now, as well as all his food. He still gets some water via his stomach tube, but once he's able to take enough fluids by mouth, they should be able to get rid of the stomach tube altogether.
His days are really full, with lots of various therapies from kicking the ball to pedaling and working on the tilt table. He's obviously trying very hard to talk, and a visit to an ear, nose and throat specialist confirmed that his vocal chords are in good shape and speech should come before too long. There is so much positive news to report as we near the two year anniversary of Ross's terrible accident. Those of you who know Ross personally know what a fighter he is. To all of you, whether you knew Ross before his injuries or have only come to know him through the website, thank you so much for your support, your healing prayers and good wishes. You are all a huge part of his recovery. Ross still has a long way to go, but thanks to all of you and his amazing desire to heal, he has come so far.
May 19, 2004 9:25 PM--I wasn't able to make it to the Ride of Silence tonight, but Betsy, Rusty, Ariel and Ross were there...along with almost 100 cyclists making the ride in honor of others who have been killed or injured while riding their bikes. Among the riders were Alan Liu's parents, and it must have been so difficult for them to participate. Their courage is truly admirable.
Betsy said Ross had a tough day today. He was really tired after all the activity yesterday, but they took him tonight and after awhile he seemed to be feeling better. Our thanks and appreciation to everyone who was able to participate in the Rides around the nation. So many useless deaths and terrible injuries to cyclists--their loss needs to be acknowledged.
Thank you, everyone, for your healing prayers, your thoughts and support for Ross and his loved ones.
May 18, 2004 9:40 PM--Even though Ross had a really busy day with doctor's appointments, his mom and Jeremiah still managed to get him to the Santa Rosa Tuesday night crits in time for the races. It was his first time back to the crits since his accident almost two years ago, and the first time a lot of his cycling buddies have seen him. I hadn't seen Ross for quite a few months myself, and I was amazed at how well he looks. He watched the races, paid attention when people spoke to him and looked so much more relaxed than the last time I saw him. Though I talk to Betsy almost every night for the updates, I don't think I realized just how far Ross has come until I got the chance to talk to him tonight and to watch him interact with other people. He's not speaking, but that doesn't mean he's not listening or understanding. He looks so healthy, his color is good, his eyes focused and his expression very intent. I kept waiting for him to say something, because it really feels as if he's ready to talk.
It was really great to see everyone at the races, but even better to see Ross back there among friends. Thank you all for your healing thoughts and your prayers for his recovery.
May 17, 2004 9:15 PM--Ross saw his chiropractic neurologist and his speech pathologist today, and both were really pleased with his progress. The speech pathologist suggested he try eating food with more texture, so Betsy fixed Ross some pasta with a meat and vegetable sauce, then smooshed it up with a fork. He was able to eat it, though he had some trouble at first with the larger "chunks." However, he managed to finish his meal and did really well. The larger pieces of food force him to move his tongue more in order to move the food within his mouth, and he did great.
Ross is also moving his right arm more, as if he's trying to work the stiffness out of it. Betsy said his movements are much more controlled than they used to be. She tried putting a pen in his hand and he was able to move his hand and make some lines and squiggles. With minimal help, he managed to write his name so that it was almost recognizable!
Betsy said Ross seemed to be so into things today, as if more synapses in his brain were firing. For instance, when she got him in the car to go to out today, Jeremiah still was off duty and Betsy said she forgot the pillows they use to help keep Ross upright in his chair. She noticed him slipping to one side when she'd look in the rearview mirror, and said she told Ross to straighten himself up. She said when she looked back, he would be sitting just perfectly straight in his chair, though she didn't actually see him make the adjustment.
Betsy and Rusty are still planning to take Ross to the Tuesday crits tomorrow night at the Corporate Center in Santa Rosa, as well as to the Ride of Silence on Wednesday. Please stop by and say hello if you're at either event. Thank you, everyone, for your healing thoughts and prayers for Ross's recovery.
May 16, 2004 9:15 PM--Don't forget: the Ride of Silence is this Wednesday night. In Santa Rosa, cyclists will be meeting at the Corporate Center. Other communities around the US are also participating. Contact [email protected] to find a ride in your area. Betsy said she is planning to take Ross to the Corporate Center for the beginning of the ride. His dad and sister will be riding. She's also taking Ross to the Tuesday night crits in Santa Rosa on the 18th, weather permitting.
Ross is doing really well and he's progressing at an amazing rate. Sitting up on the side of the bed now and able to eat while sitting. This is a complex set of moves for him that requires shifting his weight and being aware of his center of gravity, all fairly complex maneuvers. He's also getting a lot of physical therapy time on the mat, and spending about 45 minutes at a time on the pedals. He's taking most of his food by mouth now, rather than the stomach tube, and feeding himself with minimal assistance. He's also sucking liquids through a straw, but they still have to be thickened a bit for him.
Jeremiah is off for two days this weekend so Betsy and Rusty have been on their own with Ross, and Betsy said they've been really busy and are keeping him hard at work.
Thank you all for your continuing support, your good thoughts and healing prayers for Ross. He is still improving, almost two years past his accident, and has already surpassed anything doctors originally expected him to accomplish. There are no limits to his continuing recovery.
May 12, 2004 8:45 PM--Ross did really well today, though he was sleepy after his anti-seizure drug, Keppra, the same as yesterday. When I asked Betsy if the new drug appeared to be working, she said the real test will come on the 23rd or 24th of the month, as Ross's seizures appear to fall on those days each month. However, as sleepy as he was, he still had a terrific session with his physical therapist and sat upright on the edge of the bed for about twenty minutes. Betsy had set up the timer for him, and he definitely responds to it. His competitive spirit is definitely strong. He also did well on the floor mat where he spends time on his stomach while someone works along his spinal cord with massage. Ross sees a chiropractic neurologist weekly, and the massage is something beyond the regular adjustments, but Betsy said it appears to be helping.
Ross is also drinking out of a straw better, as well as showing daily improvement in a lot of areas. Thank you so much for your continuing support, for your healing thoughts and prayers.
May 11. 2004 9:45 PM--Ross did really well today. They've changed his anti-seizure drug to one that doesn't cause sodium depletion in his body and also does not go through the liver. Ross seemed to handle the new drug really well and had an excellent session on the tilt table today. He has actually met all the current goals his therapist had for him on the table, including bending over and being able to straighten up on his own, so it's time to move on to more challenging activities.
He's also doing well with "mouth" exercises. Jeremiah said that today he actually licked some food off his lip, which is a first. Ross has not been able to extend his tongue beyond his teeth, so this was a totally new movement. Working from that and helping Ross to work his tongue around his mouth, Jeremiah was able to get him to do more than he's usually able to accomplish. Betsy said he's very patient with Ross and often gets more out of Ross than either Betsy or Rusty.
However, Rusty did bring out the big exercise ball tonight and when he pushed Ross's foot with it, Ross kicked it back. Another "first" tonight happened when they handed Ross his electric toothbrush and let him brush his teeth on his own. Betsy said she usually does it for him, but tonight he brushed his own teeth with minimal guidance.
Ross continues to improve on a daily basis. Small steps, but constant ones. Thank you so much for keeping him in your thoughts and prayers throughout this long, slow recovery. Every step that Ross takes forward represents long hours of work from everyone on his "team," from his family to the many therapists and other professionals and friends who work with him. Every one of you are part of his healing. Thank you.
May 10, 2004 9:10 PM--Betsy said today was terrific and Ross was very alert and involved in the day's activities. He had his appointment today with the chiropractic-neurologist, which went really well, and then saw his speech pathologist. She was very impressed with his improvements, expecially since she hadn't seen Ross for a month. He's now able to eat by mouth, drink through a straw and even drink out of a cup, so she was really pleased with his progress.
Another goal is for Ross to be able to stick his tongue out of his mouth, a movement he's not mastered yet. It's a fairly complex maneuver, but it's all part of being able to move food around inside his mouth with his tongue. His right arm and hand are doing better. Betsy said that when his right arm tightens up, she just has to tell ross to "bring your arm out" and he relaxes it and is able to follow instructions. He's still got some serious damage from the original accident when his elbow was badly injured. It's healed now, but with calcifications and a lot of stiffness. Betsy said they still haven't heard from the Stanford hand clinic, but she suspects the number the doctor was using for contract might have been incorrect and she's sent them the proper one.
In two weeks, Ross has an appointment with an ear, nose and throat specialist to see if there's anything they can do about Ross's congestion. He's always had allergies, but they are much worse this year.
Ross continues to show improvement, though it's been a long, hard time for him. Your support is so important. Thank you for your prayers and healing thoughts, and for remembering Ross as he continues to come back from such horrible injuries.
May 9, 2004 8: 30 PM--Just talked to Betsy and she said Ross is doing absolutely fabulous. He's alert and active and has had a great weekend. When I called he was working the ball with his right foot, kicking it with more control than he's shown in the past. Betsy said he even managed to keep kicking the ball while he was on the phone with Katie--multi-tasking! He's drinking more fluids through a straw and Betsy said she's able to use less thickener as he learns to handle liquids better. He's also taking most of his medications by mouth along with his food, rather than through the tube in his stomach. He's had a really busy few days and was really tired when he went to bed last night. Betsy said he woke up tired and eventually had a small seizure this afternoon, though he didn't appear to have any lasting effects from it. His right arm is still very tense, but Betsy said she can pull it away from his body and he is able to loosen it up and relax the muscles.
Ross continues to show improvement, even now, almost two years past his initial injuries. Thank you so much for your continuing prayers and healing thoughts. Your strength and encouragement are a powerful part of his recovery.
May 5, 2004 8:40 PM--I just talked to Betsy and she said Ross has had a really good day today. Had an excellent physical therapy session and then the new mat arrived and he did some work on that. Rolled from his back to his stomach, but didn't want to roll back over again. He was able to actually drink through the straw today and finished quite a bit of his drink that way. It's such a complex muscle movement to use a straw that Betsy was really excited about this new step. Overall he's just looking really good. Thank you so much for your continuing support of Ross though this long recovery.
May 4, 2004 9:10 PM--Ross saw his neurosurgeon today, who checked on the shunt and said it was functioning just fine. He also had an excellent physical therapy session and spent quite a bit of time kicking the ball. He's feeding himself with help, taking all of his food orally as well as some of his fluids. He's also doing better with "lighter" fluids without as much thickener, which means he's better able to control the flow of liquids once they're in his mouth, to prevent choking. Betsy said he used a straw today and was almost able to draw some of his smoothie into his mouth. Using a straw requires a complex set of muscles and he's just not there yet, but getting closer all the time. Thank you, everyone, for your continuing support, your healing thoughts and prayers for Ross and his family.
May 3, 2004 9:15 PM--First of all, I do apologize for my lack of updates but I've been away since last week and unable to access the website. I talked to Rusty tonight and he said Ross is doing great, that he had a wonderful weekend, is eating quite well on his own now, and seems fully relaxed and back to where he was before his last seizure. He had an excellent meeting today with the chiropractic neurologist, but the one thing that really got my attention is that Ross took his first real "swigs" out of a bottle of beer! Rusty said he was able to form his lips around the opening without putting the entire thing in his mouth like a child might, and took a drink...did it three times without any problem. We need to find him one of those "I work for beer" tee shirts! He's doing so much better than he was just a short time ago...Ross definitely appears to be progressing at a very steady rate. Thank you, everyone, for your continuing support and your healing thoughts and prayers for Ross and his loved ones.
April 27, 2004 9:30 PM--Ross had a better day today. He had an appointment at the hospital for some tests--looks like possible dehydration might have been part of the trouble. Some of his meds require reduced fluid intake because of the problem in keeping his sodium levels consistent, and his increased perspiration from pain might have dehydrated him a bit. Betsy said his trip to the hospital to draw blood was excellent. He handled the trip well, was very alert and watching everyone and every thing. His left pupil doesn't appear as dilated as it usually is. Betsy said the difference has been less since his seizure. They got home around 1:30 and Betsy said she could tell he was in some pain, so she asked if his head was hurting and he nodded. She asked if his stomach hurt and he shook his head no. Then she touched different parts of his head to find out exactly where he hurt--he's definitely able to be more explicit now in his communication. He'll go in for a CT scan in a few days to check on the shunt.
In the meantime, thank you, all, for your continuing support of Ross and his loved ones and for your healing thoughts and prayers.
April 26, 2004 9:55 PM--Ross had kind of a rough day today, too, though he was feeling better tonight. Very tired, toney and obviously uncomfortable most of the day, but started to act more like himself by evening. He's going in for some routine bloodwork tomorrow and will have his shunt checked on Thursday. Please remember Ross and his family and loved ones in your thoughts and prayers.
April 25, 2004 8:45 PM--Ross had kind of a crummy day today, but he hasn't felt really well since his seizure Friday night. However, by tonight he was doing much better. Betsy said she was certain he recognized our son Jon and his wife Melanie when they stopped in to visit on their way back to Boston. Ross is dealing with allergies and hay fever, which means a lot of coughing and drainage from his sinuses, but Betsy said she thought it was more than just that. He was running a low grade fever, sweating and very tense most of the day. He's done this before after a seizure, then moved on to bigger and better things, so possibly it's all part of a growing awareness and not something negative. Still, it's hard not to worry because his health is still very fragile. Betsy said they're taking him in for a scheduled appointment shortly to have the shunt checked and to make sure that's not causing trouble.
In the meantime, please remember Ross and his loved ones in your thoughts and prayers.
April 24, 2004 8:30 PM--Ross's dad said Ross is still pretty wiped out from his seizure yesterday, but was beginning to feel better this evening. Betsy said he looks good--much better than he has after some of his seizures, but they kept his schedule pretty easy today and didn't push him. Betsy said he's still really congested. She's used some Vick's Vaporub on Ross this morning and he loved it. Makes me wonder if it's a "scent memory?" Sometimes, smells of things familiar will trigger all kinds of memories...
Anyway, Betsy said he's tired tonight but she's hoping he'll get a good night's sleep and be back on top of things in the morning. Thank you so much for keeping Ross in your thoughts and prayers. For every one step back, he's always up for two more forward.
April 23, 2004 9:35 PM--Ross had a really good day until he had a seizure tonight around eight o'clock. Rusty said it lasted about three and a half minutes, which is what they consider "moderate." He seems to have them monthly, and though there are certain behaviors that appear common before a seizure: longer naps, tonier muscles, etc., they're not exclusive to the days in which he has a seizure.
Hopefully, this one, like the others, will be a prelude to more advances in Ross's recovery. Please keep Ross and his loved ones in your thoughts and prayers.
April 22, 2004 9:10 PM--Ross had a pretty good day, though he's still congested. Betsy said she's not sure what's causing it, as they work extra hard to keep his immediate environment dust and allergen free. Still, he's got a bad cough and a real problem with congestion. He took a nap this afternoon, then indicated he was uncomfortable, but Betsy said he took an Advil and appeared to feel better later on. He had a great session on the tilt table. They're following the routine of quarter turns during therapy, and it seems to be helping Ross with his balance. Jeremiah also gives Ross his fruit smoothies while he's on the tilt table, and using the food as part of his therapy seems to be a good incentive. I asked Betsy if she thought Ross recognized the challenge in the work he's doing, and she said she was sure he did, using the timer and his response to it as an example.
Thanks to friends of the family who have donated the money to purchase a 5'x10' mat for Ross's therapy, and thanks to all of you for your prayers and healing thoughts. Ross continues to show improvement as his recovery progresses.
April 21, 2004 9:10 PM--Ross had a long day, but a really good one. Betsy said he had physical therapy this morning and the therapist had him sitting on the edge of the bed, balancing and holding his head up. He was able to sit unassisted for about 30 seconds at a time until Betsy set up a timer so Ross could see how long he was sitting. He sat unassisted for five minutes with the timer on, so that was definitely the incentive he needed.
Later on Betsy took him in to Santa Rosa to see the orthopedist about his injured elbow, and the news was better than expected. He does have some bone spurs, but not as serious as they'd feared. The doctor is going to schedule a visit to the Stanford hand clinic to see if there is more that can be done for him.
Tonight he's tired, but that's to be expected after a really long day. Please remember Ross and his loved ones in your thoughts and prayers, as well as the families of the two cyclists killed in Sonoma County this past week, and also Jill Mason, the cyclist who was so badly injured by a drunken driver on Easter Sunday morning.
April 20, 2004 9:10 PM--Betsy said Ross had a good day today. She's realizing how hard he is working, with time on the tilt table, floor exercises, kicking the ball, using the pedals...today he took over an hour's nap and really seemed to benefit from it. Ross is doing well feeding himself. He's found a more comfortable position by putting his elbow down on the table, something he figured out on his own. He's also doing different moves on the tilt table and pushing his own boundaries.
Thank you so much for your continuing prayers and healing thoughts for Ross and his loved ones.
April 19, 2004 9:20 PM--I was reading the entries in the guestbook today and had to laugh at one from Peter Mork, bemoaning the fact I haven't done any "red letter" posts. He's right...things that would have meant a red letter post only a few months ago are now expected facets of Ross's recovery, which tells me just how far Ross has come.Thank you, Peter, for reminding me of that! It's so easy to fall into a routine of updates without thinking of the overall aspects of Ross's recovery. What he is doing now is truly amazing.
Ross's mom agrees. Betsy said Ross went to the chiropractor today for an adjustment, something he seems to really look forward to. After a nap and time working the pedals, Ross was back on the tilt table. The chiropractor has suggested that Ross be turned to the right in gradual increments while on the table, something that might cause more cognitive awareness. Betsy said it worked! She said they could really see it tonight, especially when Ross began working through his exercises without being either helped or reminded. He went through his entire routine on his own. Overall, he's doing beautifully. Sitting up straighter, more aware...eating seems to be a key. Since he began eating by mouth and feeding himself, he's taking huge leaps forward.
To all of you who continue to follow Ross's progress, who pray for him and send healing thoughts, our utmost thanks and gratitude. Your support is a huge part of his recovery.
April 18, 2004 9:15 PM--When I called Betsy tonight she said Ross was doing "SO well," with the emphisis on "so!" She said he is actually able to feed himself now. It's messy and he needs a bit of help, but he can get the spoon into his mouth and can take it out again. He's still having trouble with his right elbow which was so badly injured, but Betsy said it's amazing how well he's doing.
Ross spent an hour on the tilt table tonight. He always seems more alert and involved when he's on the table. Somehow, when he's held upright, it's as if all his senses are on alert, though after his hour he is definitely tired tonight. Still, his improvements are really obvious. He's able to communicate by "mouthing" his comments, though he's not speaking audibly. Betsy said he's able to tell her what he wants and can answer "yes/no" questions with strong shakes or nods of his head, so he's definitely understanding.
Thank you, all of your, for your prayers and healing thoughts for Ross. You are so much a part of his recovery.
April 15, 2004 9:10 PM--Betsy said Ross was really tired tonight, but that's mainly because he had such a good and active day today with lots of therapy. Tonight he was kicking the ball with his right foot and Besty said he was doing really well and showing a lot of control and coordination. He's not trying to much with his left, and that leg is still fairly toney, but Betsy said she's able to move his leg better than she could before and there is more flexibility to it.
Ross is also eating well by mouth. Betsy made some almond milk yogurt that he seems to really like. Ross is allergic to milk and milk products, so it's hard to find foods that provide all the nutrients for him that he can safely eat. Still, Ross continues to do well. He's alert and obviously aware of what is going on around him. Though he's not speaking out loud, he "mouths" words and tries to make himself understood. He's come a long way.
Thank you so much for your healing thoughts and prayers for Ross and his loved ones.
April 14, 2004 9:00 PM--Just talked to Betsy and she said today went well, though it was more of a rest day for Ross. He was fairly toney, but in terms of function it was great. Betsy said he seemed a little emotional, and we wondered if maybe he was picking up on the conversations about Alan Liu and Jill Mason. Ross is very aware of what is going on around him, and obviously there has been a lot of discussion over this horrible accident that took Alan's life and has injured Jill so badly.
April 13, 2004 9:10 PM--I apologize for the lack of updates for the last five days, but I've been away and unable to access the website. Betsy sent me an email tonight to catch us up on things about Ross--I know it's been a really tough time for the Dillons with the death of another cyclist and the terrible injuries to his companion bringing back so much of the pain from Ross's accident:
Kate,
I thought I would write down what I can remember since my mind is a sieve.
Ross had a good weekend and seemed to be less confused with a house full of people than anytime since he was injured. His sleep at night is often disrupted for hours; other nights he sleeps through. I think postnasal drip and the accompanying coughing often awakens him, and he can't go back to sleep. I fear that scar tissue in his sinuses from the fracture and repair of his sinuses are causing his allergies to be worse.
He is much more relaxed in his arms and hands and we have new hand splints for dealing with the contractures in his hands. Cognitively, he is doing better. After he had an adjustment yesterday at the chiropractor's, I said, "Having an adjustment must feel good."
He nodded his head yes vigorously. Later, I said "Hi" to him and he mouthed back, "Hi."
Today, I pursured my lips to blow a kiss and he did the same thing.
The speech pathologist was very excited with his progress in opening his mouth for food, immediately swallowing, and being able to drink a smoothie from a sippy cup.
He continues to make progress in trunk control and holding his head up without support.
It seems that Ross and the cyclist who was hit by a car on Sunday knew each other; they both graduated from Santa Clara University and they have friends in common. We ask that people will pray for Jill and her family and also pray for the family of Alan Liu who died when the car hit him. When a cyclist is hit from behind, there is no warning, no defensive action that can be taken. A cyclist is at the mercy of drivers who we all assume are going to be responsible as they drive. When the driver fails to care enough to drive responsibly, it is a broken contract and it is the person who is hit who suffers.
Betsy
Please keep Alan's family as well as Jill and her loved ones in your thoughts and prayers. This has to be such a terrible time for all of them.
April 8, 2004 8:40 PM--Betsy said Ross had a pretty good day, though he didn't sleep well last night. She said his allergies are bothering him and he coughed a lot, but he did sleep in until 10:30 this morning. He was pretty tense and toney most of the day, though he did enjoy his cup of coffee. Betsy said she gave him regular (not thickened) coffee in a spoon and put it close agains his lips. He was able to "slurp" it up, which is a fairly involved muscular action. Baby steps, but still steps forward. He just keeps moving forward. Thank you, everyone, for your continuing support.
April 7, 2004 8:20 PM--Just talked to Betsy and she said Ross had a really good day today and did just great. Had an excellent physical therapy session, rolling from side to back w/o help and sitting on the side of the bed unassisted. His nurse, Lisa, came today, and after Ross's bath he spent enough time outside to actually get a bit of sun. Betsy said when he came in an hour later he looked really healthy and his color was great. Now, since I remember Ross during the bike racing season, sunburning until he and Jon used to sit here and peel long strips of skin off his back, it was nice to hear from Betsy that he only got a "little bit" of sun!
When I called, he was working on the pedals with a video of the 2002 Tour de France playing on the TV for inspiration.
Lisa put a spoon in his hand while feeding him today, and Ross was able to lift it to his mouth and open his mouth. Betsy said he seems to be getting more fine motor skills back in his right arm, even though that is the one with the badly calcified elbow. They're taking him to see an orthopedist in a couple weeks to find out what kind of treatment they can get to help give Ross more mobility with less pain, hopefully something that doesn't include surgery. Betsy said she'd heard they are using radiation to remove calcification in joints, so that might possibly be an option.
If Ross's recovery seems at all slow, do as I did last night and go back and look at entries just a few months ago. He has come SO FAR! Thank you, everyone, for your unwavering support, your healing thoughts and prayers for Ross's recovery. You are so important to him, and we can't thank you enough.
April 6, 2004 10:10 PM--Ross had two seizures today, both mild but still scary for his family and for him as well, I imagine. They lasted a couple minutes each and were not grand mal types. Betsy said there's no way to know if it's a result of reducing some of his meds or possibly a problem with the shunt, or even something totally unrelated. They have a call in to the doctor to see what steps they should take next.
On a good note, Betsy said that when she was drinking her coffee this morning, she fixed some for Ross as well, but she adds a thickener to his to help prevent choking. She said he kept eyeing her cup, then looking at his cup, letting her know he definitely preferred unadulterated coffee!
Although the seizures can be pretty frightening for everyone concerned, they can also be a precursor to more healing within Ross's brain. Other brain injured patient caretakers have commented on the fact that seizures often occur just before a new breakthrough. Please remember Ross in your thoughts and prayers, that his healing continue and the seizures mean his brain is repairing and mending. Thank you so much for your very important role in his recovery.
April 5, 2003 10:10 PM--I'm not certain why, but for some reason my post last night didn't post! That's never happened before. I must not have saved it properly, and I do apologize.
I talked to Betsy earlier this evening and she said Ross had a good day today. He slept all night and had his breakfast by mouth. In the past five days, he's taken only one meal through the feeding tube. Everything else has been by mouth, something he could barely manage just a few short weeks ago.
He spent time working on the pedals, Betsy worked with him doing his mouth exercises, he had lunch, took a nap and then got up to more exercises and therapy. Jeremiah had him working on the mat and also doing the pedals.
Another thing that's really exciting is the fact they are reducing the use of one of the drugs Ross takes that can become addictive and cause seuzures when it's withdrawn. However, under a doctor's care, they are giving Ross a natural supplement called GABA (gamma-aminobutyric acid) which is an acid found in the central nervous system -- predominantly in the brain -- where it acts as an inhibitor of nerve impulses. This supplement takes the place of the other prescribed medicine, but without the dangerous side effects. Hopefully, Ross will be able to reduce the more dangerous drug while taking the supplement.
He's beginning to use more "body language." Betsy said that tonight he shrugged his right shoulder and gave her kind of an inquisitive look when she was talking about something. He also tried to lift a napkin to his face to wipe his mouth.
So much of what Ross is doing may seem terribly rudimentary, but when you compare it to what he could do just a few short months ago, it's a reminder of just how amazing his recover has been. Thank you so much for your prayers and healing thoughts. Your are all part of his healing process.
April 3, 2004 9:00 PM--Not much to report today. Betsy said it was a quiet day, but Ross was fairly toney and seemed blue...but, like Betsy said, as he becomes more aware of his circumstances, he's bound to feel more depressed. Please keep Ross in your thoughts and prayers. He needs all of your positive energy as he regains awareness of himself and the world around him.
April 2, 2004 8:45 PM--Ross had a good day and is doing really well. Rusty took him into the hospital this morning for some routine blood work and the rest of the day was spent with therapy and enjoying the gorgeous weather outside. Betsy said he did range of motion exercises, spent about 18 minutes on the pedals and had a terrific tilt table session.
On a personal note, our daughter and son-in-law are the proud parents of a new baby girl, born at 2:55 A.M. this morning. Grace Katherine weighs 7 lbs, 10 oz and is 19.5 inches long--she is already at home tonight with her big brother, Luca. Grace was in a hurry to arrive and made her appearance just 14 minutes after Sarah and Tony got to the hospital, where the very talented nurses at Santa Rosa Memorial delivered our granddaughter before the doctor arrived.
There is so much for us to be thankful for, most especially all of you who are so much a part of Ross's recovery. Thank you so much for keeping Ross and his loved ones in your thoughts and prayers.
April 1, 2004 9:10 PM--Ross did really well today, in spite of the fact he didn't sleep much last night. Betsy said he was awake from 2:30 to about 6:00 AM. He had his breakfast at 5:00 AM and ate it entirely by mouth rather than a feeding through his stomach tube. After his breakfast, he went right to sleep. Later in the day, Betsy said he had a terrific session on the tilt table, and it's obvious he's trying really hard to talk. She said it's hard to recall how poorly he was doing just a couple days ago.
Thank you, everyone, for your healing thoughts, your support and your prayers for Ross's recovery.
March 31, 2004 8:00 PM--Ross had a much better day today. Betsy said they got him up around 9:00, before Scott, a wonderul psychologist, came by. He played some music for Ross, songs Ariel had taped that were Ross's favorites, to see how he would respond. Betsy said Ross definitely recognized some of the music and responded to it. He also got a massage today and was looking really good tonight. He's "mouthing" words, but Betsy said they're not really sure what he is trying to say. He worked on the pedals for awhile. At some point he'll be able to use them to exercise his arms, but they have to get his right elbow working better first. He had a terrible break in his elbow from the accident and has some serious calcification problems now which prohibit him from bending it all the way.
Thank you, everyone, for your healing thoughts and prayers for Ross's recovery.
March 30, 2004--Ross's mom emailed the update Wednesday morning, so I'll just post her message verbatim:
Ross was sleepy in the morning, was okay for PT, but not great. He became toney, agitated and was coughing a lot as the morning progressed. One interesting thing is that I got out the container of Vicks Vapor Rub and let him smell it. The menthol seems to help open up his sinuses. He really enjoyed it and keep sniffing for about 10 minutes. Around 3 PM when we offered him a smoothie, he refused. His eyes looked glazed and his temp was 99 axillary (add a degree for thermometer-in-mouth equivalent). I asked him if he hurt and did not get an answer, but he did nod yes when I asked if his throat hurt. We gave him an Advil and I left to run an errand. When I returned an hour later, he had eaten the smoothie. Jeremiah said that when he ate his lunch, Ross looked longingly at it and when he offered the smoothie, Ross ate all 12 ounces.
When Jeremiah got him up for mat exercises and the pedals around 6, he did well and he clearly felt much better. He ate all of his dinner, watched me play Solitaire and then went off to bed around 8:30. Jeremiah said that he slept well through the night. I am thinking that as Ross is more alert, he is also more disoriented at times and that is possibly very scary.
Take care.
Betsy
March 29, 2004 9:00 PM--Betsy said Ross didn't have a very good day today. He had to be up earlier than usual for his physical therapy, so he wasn't as wide awake for his session, though he did well. After a nap, Betsy took him into the speech pathologist for an appointment, where he was tired and toney and not at all cooperative. Betsy said she ended up pulling the "good cop/bad cop" routine--all by herself--but it worked enough that Ross was able to get through his session okay. However, later he had a petit mal seizure, not as serious as some he's had, but enough that Betsy said they gave him his anti-seizure medications early. She's hopeful this is just a prelude to another big step forward, something that often occurs following a seizure.
One fairly tough moment happened when Betsy sat and talked to Ross tongiht. She said he looked rather sad and blue, and she explained to him again that he'd had a terrible accident but he was getting better, that he was home with his family. She said Ross started to cry, which tells her he understands what she is saying, but it's so tough to watch him go through this. My personal feelings are that, as tough as it is for Ross, it's got to be even harder for his parents, his sisters, and for Katie. Please keep all of Ross and all of his family in your thoughts and prayers. You are all such a powerful part of his recovery.
March 28, 2004 9:00 PM--Ross had a visit with a neurologist on Friday for a general exam. Betsy said she bombarded the poor doctor with a long list of questions, but was quite happy with the information she got. Ross did really well and was bright, alert and cooperative for the visit. The doctor ordered some blood work to check on a few things and to establish a base from which to work. He's also going to have Ross back off on some of his medications that can become physically addictive over time, but it will require substituting other substances to help his body adjust. (Sorry I'm not being more specific, but there is no way I can figure out the spelling on some of the stuff Ross takes! Will try and clarify this at a later date.)
Betsy said she and Rusty got Ross home around one after the visit and put him to bed, assuming he would be really tired from the outing, but he didn't want to be in bed and yelled loud enough that Betsy said she and Lisa, his nurse, could hear him out in the kitchen. He's not speaking yet, but he has learned to vocalize!
He had a really good weekend, working on the pedals, the tilt table and the many other therapies that are part of his daily routine. Betsy said he's also eating well and taking most of his meals by mouth, something he couldn't do just a few weeks ago.
When I look back over this record of Ross's long recovery, I am absolutely amazed by how far he has come. Much of his healing is due to the many prayers and the constant support of so many of you. Thank you for all you have done for Ross and his family.
March 25, 2004 9:00 PM--Betsy said Ross had a terrific day, even though he didn't sleep well last night. He's moving his mouth a lot, as if trying to form words, and Betsy said he's also eating really well by mouth. Tomorrow he has a visit with a neurologist, so Betsy is hoping he gets a good night's sleep tonight. Please hold the good thought for Ross when he sees the doctor Friday morning.
March 24, 2004 9:20 PM--Betsy said Ross is doing surprisingly well following his seizure yesterday. He had a good day, managed to drink a smoothie from a cup with the occupational therapist and also washed his face with some help. The goal is to teach him to do a lot more for himself as soon as he's able.
Your support, your healing thoughts and prayers make an amazing difference in Ross's life. Thank you.
March 23, 2004 9:45 PM--Ross was tired and toney today, though he did well in physical therapy. He took a nap afterwards, but later this afternoon he had a seizure that lasted between 3 1/2 and four minutes. Betsy said it was really unusual because only his right arm seemed to be involved. His legs didn't move at all. Within a half hour afterwards he was moving his arms freely and vocalizing quite a bit, though not in any understandable words. Within the hour, he was tracking well and clearly following Ariel as she moved about the room. He has an appointment with a neurologist on Friday, so Betsy is hoping to get answers to some of the questions they have. Thank you, everyone, for your healing thoughts and your prayers for Ross and his family.
March 22, 2004 9:15 PM--Ross slept really well last night in spite of all the congestion from his allergies. Betsy said they had to wake him up in order to have him ready for his ten a.m. physical therapy. He did well, including sitting on the side of the bed for half an hour with very little help. They had to go into Santa Rosa for a visit with the speech pathologist. Betsy said Ross was wide awake and very alert going in, but even though they arrived on time, they had to wait for their appointment. By the time the SP saw Ross he was very tired and didn't do all that well, though Betsy said the speech pathologist was awesome--very patient and understanding. After the appointment, they went out for smoothies, something Ross absolutely loves. He got a nap this afternoon, but ate his dinner by mouth and continued to look longingly at the food when everyone else was eating. Betsy said he's also paying attention to things farther away from him--for instance, when he was in the great room and Betsy was in the kitchen, Ross was watching her. He's definitely more aware of things outside his immediate sphere.
He continues to show improvement, though in very small increments. However, if you go back and look where Ross was a year ago, it's amazing how far he's come. In many ways, that improvement is due to all of you, to your prayers, your support, your constant thoughts of Ross and his loved ones. Thank you so much.
March 21, 2004 9:10 PM--Betsy said Ross was doing really well today, even though he didn't get much sleep last night. Between naps today, though, he had a session on the tilt table, worked with the pedals, sat on the side of the bed and balance, worked on the floor mat and spent time kicking the ball suspened in front of him. Betsy said he's reaced the point where he can do it without looking at his feet, which is quite exciting. He's mostly using his right foot. He continues to show improvement every day. Thank you so much for your thoughts and prayers during Ross's long recovery.
March 20, 2004--note from Betsy while I was away:
Ross did three things today that were awesome. This morning he sucked through a straw for the first time. He brought the fluid up through the straw twice, but I am not sure it went into his mouth. The third time, he pulled it into his mouth and made a face. A little later, he released his bite on the hard rubber exerciser that he had between his teeth on command, not just once but three times. The last thing was tonight around 6:30, when he mouthed, "I love you."
His new ex-n-flex pedals came yesterday, and he has had two sessions, one each day that lasted only 5-6 minutes each time. He continues to roll on to his stomach and back again to his side. And of course, he is still eating well. He is eating 3 meals + snacks each day.
We have a lot to be thankful for.
Betsy
March 18, 2004 9:20 PM--Just talked to Betsy and she said that Ross had a terrific day. His congestion is improving and he had a great session on the tilt table and working the pedals. He also used both feet to position and kick a ball that was suspended in front of him. Betsy also said she found an ice cream Ross can eat. He is allergic to milk and milk products, so it's not easy to find things that are good tasting to give to him, but she found one made from hazelnuts that he really loves.
Thank you so much for your healing prayers, your thoughts and your support. You all mean a great deal to Ross, his family and his fiancée.
March 17, 2004 9:15 PM--Ross had another good day that actually included a massage so good he fell asleep afterwards. As his mom said, that's always the hallmark of a good massage! He's still really congested from allergies, but this warm weather we're having has everything blooming and pollinating like mad. Betsy said they've gotten some new meds from the health food store to try and help alleviate his cough, but he just started on them today.
Tonight Betsy hung a ball from a beam for Ross to kick. She said he spent a lot of time moving it into position with his feet and then kicking it. Small kicks, but the moves were very definite and he kept at it. He's also moving more in his sleep at night, rolling from side to back and moving his legs. Small things, but constant signs of recovery.
Thank you everyone for your healing thoughts, your support and your prayers for Ross's recovery.
March 16, 2004 9:15 PM--Betsy said Ross had a really good day today, though he's terribly congested with allergies. Still, he had a great session on the tilt table, is eating more by mouth all the time, rolling from his side to his back and then back again on the floor mat, and generally showing consistent improvement. Tonight, Betsy said he's really tired, but they kept him busy all day long.
Thank you, everyone, for your continuing support, for your prayers and healing thoughts.
March 15, 2004 10:15 PM--Today went well, though Betsy said she was worried about Ross's cough last night. Pneumonia is always something they have to be concerned about, but then today, when Ross had physical therapy, he rolled all the way over by himself, then sat unassisted on the side of the bed for fifteen minutes. The more Ross is able to move himself, the less the risk of problems with his lungs.
They went into town for speech therapy, and Dr. Swain was very impressed with Ross's improvement. In fact, she used the word "phenomenal" to describe Ross's progress. He's eating well and finished off almost an entire smoothie today, eating about a cup and a half of it with a spoon. Betsy said they're working on his using straws, but he's not there yet.
Ross continues to show improvement. Thank you, all of you, for your prayers and healing thoughts for Ross's recovery.
March 14, 2004 9:20 PM--Just a brief note to say that Ross had a fairly good day, though is allegies were definitey a a problem. Betsy said he's very alert and aware of what's going on around him. Thank you, everyone, for your healing thoughts, your prayers and your concern during Ross' s long recovery.
March 13, 2004 9:00 PM--Betsy said Ross had a very good day. He's eating lots by spoon, he's alert and watching everything. She said he's really a part of things. They had a bit of a scare when his oxygen saturation levels dropped a bit during his nebulizer treatment, but it came right back up and he did great the rest of the day.
Our thanks to everyone for keeping Ross in their prayers, for thinking of him and sending healing thoughts. You are very much a part of his recovery.
March 12, 2004 9:15 PM--Ross had a really good day today. He's eating well...his food is all mashed and puréed but he is able to take it by mouth and, some of the time, to feed himself a bit with the spoon. A big difference from having his meals injected into his stomach through a tube. He's able to experience taste and some texture, though it all has to be kept fairly smooth and liquified in order for him to manage it. He's able to hold his head up for long periods of time now while he's on his stomach and is doing more every day. His hands are more relaxed, his feet no longer turn in and he's alert and attentive to all the activities going on around him.
Please take a look at the notice at the top of this page about the "Ride of Silence." If any of you are in a position to organize a ride in your community, please think of doing this. It's so important to make folks aware of cyclists on the road.
Thank you, everyone, for your kind notes, your healing prayers and thoughts for Ross and his family.
March 11, 2004 10:00 PM--Ross had a really wonderful day today...his mom said he slept well last night and this morning drank half of his latte by mouth, the other half through his feeding tube. He also ate chicken/apple sausage by mouth and green salad. Everything is, of course, puréed, but the flavor is still there and Ross appears to love it. He's definitely more aware of his food, and Betsy said she's paying more attention to flavors now that he's eating more by mouth. He took a long nap, then had a great session on the tilt table. Jeremy, his physical therapist, also gave him more food by mouth, which he seems to enjoy.
Still no more words, but Betsy said he is moving his mouth a lot, as if he's trying to talk. Thank you, all of you, for your thoughtful notes, your prayers and your healing thoughts.
March 10, 2004 10:00 PM--Ross ate two meals by spoon today, opening his mouth, using his tongue to move food around, swallowing...he's doing really well and this is a huge step. The food is ground up really small, but still it's a huge improvement for him to be able to take food by mouth and swallow. He also spent time on his stomach moving an stretching, and tonight was knocking a tennis ball off his tray for the dog to chase. He did that about half a dozen times.
His improvements are growing by the day. Thank you, everyone, for your thoughts and healing prayers.
March 9, 2004 9:00 PM--Ross had a pretty good day today. Got up early for physical therapy, then took a nap. Later he worked on the pedals, though Betsy said he didn't look too comfortable and didn't stay with it too long. He ate about 4 tablespoons of applesauce, which may not sound like a lot, but the fact is, he's finally opening his mouth really well and swallowing without any trouble, which is a huge step for him. Betsy said that when she puts the spoon in his hand, he works really hard at trying to bring it to his mouth and opening his mouth. She also said she can see him trying to put all the "pieces" together, ie: the act of eating, chewing, swallowing, as if he's trying to recall doing this before. He also appears to really be trying to talk, though he's not said anything else since he spoke on the third.
Ross has also decided to let Betsy use an electric toothbrush to clean his teeth, and is able to open his mouth to give her access. She thinks that the spoon feeding is a big part of his new skills...it's more than just the food. It must be triggering all kinds of memories for him.
Thank you all so much for your continuing support of Ross, for your prayers for his recovery and your kind and generous thoughts.
March 8, 2004 9:30 PM--Today went well. Ross had physical therapy this morning, but since the physical therapist had run the Napa Marathon the day before and was kind of sore, she didn't work Ross quite as hard as she might have otherwise. The speech pathologist cancelled because of an emergency, so Betsy took Ross out for a latte and then to a park in Santa Rosa. She said he drank a lot of her latte by spoon and also handled the car ride really well. The chiropratic neurologist who treats Ross had suggested car rides because they help him with vestibular integration--essentially helping him to balance. Betsy said Ross rested for awhile this afternoon then had a good tilt table session and did well on the pedals. The biggest change, she thinks, is in his ability to tolerate more activity for longer periods.
Thank you so much for your prayers, your thoughtful messages to Ross in his guestbook, and your healing thoughts for him.
March 7, 2004 8:15 PM--Today Betsy and Rusty took Ross out for a ride, and they ended up going to Murphy's Pub in Glen Ellen, where Ross used to work. Betsy said she ordered a non alcoholic beer with her fish and chips, and Rusty ordered the "real" thing. Ross drank some of Betsy's, but she said he really seemed to prefer Rusty's! Unfortunately because of all the meds he's on, he couldn't have very much alcohol, but Betsy said it was fun to let him try some because he so obviously enjoyed it. He also ate some of Betsy's fish without the batter and some of the cooked peas they serve. She said he seems to be trying really hard to speak, but so far he hasn't said anything else.
She did say he continues to do exceptionally well on the tilt table and he's very relaxed and alert. It's really exciting to see his continuing improvement. Thank you, all of you, for your thoughts and prayers and also to those of you who have written such nice notes to Ross's guestbook. His folks read all of those messages to him and then definitely mean a lot to the family.
March 5, 2004--I was away on the 5th so Betsy emailed me an update for the day:
Ross's new OT was here today. She is concerned because his hands are beginning to contract. She is telling us how to treat that and we have some ideas ourselves. Thankfully, when he is peacefully sleeping his hands are completely relaxed. Ross is much more alert these days, and I have noticed that he has more tone (tension in his body) since he has become more alert.
Ross again spent time on a mat on the floor. He seems to really enjoy being flat and on a firm surface. He again rolled from his side to his back several times. He did well eating applesauce-four tablespoons tonight. He was still looking longingly at the bowl so I gave him a tablespoon of soy yogurt. When that was finished, I said something about more and he moved his right arm in what seemed an attempt at purposeful movement. That gave me the idea of placing the spoon in his hand. He surprised me by holding the spoon, somewhat like a baby holds a spoon. I was able to scoop yogurt on the spoon while he held it, help him bring it to his mouth and he opened his mouth and ate it. He seemed overwhelmed by the experience. After eating 5 spoonfuls of yougurt, he was looking pensive, puzzled, sad? I am not sure, but it was definitely an emotional experience.
He is now sleeping soundly.
March 4, 2004 8:00 PM--Today wasn't nearly as exciting, but Betsy said Ross is definitely moving his mouth a lot and appears to be trying to talk. She had to be gone for much of the day taking care of errands and business, but Ross had a full day of therapy and work with his caretaker and therapists. Betsy said that when she got home, he'd had a good session on the tilt table and had spent time working the pedals, but there were no actual words today. He's done it before, though, and he'll do it again.
Thank you so much for all your wonderful notes and messages today. It's kind of overwhelming when I realize how many terrific people there are who regularly follow Ross through his website. You are all part of a powerful force in his revovery.
March 3, 2004 9:15 PM--It's been one year and nine months to the day since his life was irrevocably changed, but Ross spoke clearly to his mom for the first time since he was injured, this afternoon. It was only a single phrase, "How are you?" but Betsy said it was spoken clearly and without any sign of speech impediment. The doctors at Kentfield told Betsy that when he started speaking, Ross would most likely repeat phrases he has heard often...Betsy said she walked into his room and asked him, "How are you?" and Ross repeated the phrase. That's pretty exciting stuff! She said it wasn't said with his usual inflection, but it was clear and very definitely audible.
Other than that, it was a fairly routine day, (as if anything could be routine after that!) with Ross doing his exercises and therapy, eating a bit from a spoon, and generally working hard at getting healthy again. Betsy said he's extremely alert, obviously interested in everything going on around him, and very definitely showing signs of recovery. Thank you, everyone, for your continued support, for keeping Ross in your prayers and for sending him all those healing thoughts. They've very obviously paying off.
March 2, 2004 8:30 PM--Today was another busy day. Ross slept all night long, barely even waking when Betsy fed him through the stomach tube at five. He finally got up at eight and was on the tilt table by nine. He also spent almost half an hour pushing the pedals, then ate six full tablespoons of applesauce by mouth, the most he's ever done at a single sitting. His swallowing is definitely improving.
Betsy said she helped him with his mouth exercises, then he had lunch. Afterwards, Jeremiah took him outside in his chair to enjoy some of the gorgeous weather we're suddenly having. Ross's afternoon was just as busy with therapy and a couple of rest periods. Also, Betsy fed him more food by mouth, including some pureed lamb and a few bites of espresso chocolate torte a friend brought over. She said he really seemed to like it, but the consistency was different from what he's been eating. He did more mouth exercises and then Betsy brushed his teeth. She's using an electric tooth brush on him and Ross tolerates it really well. Now, Betsy said, he seems exhausted and his eyes look sleepy. Jeremiah is getting him ready for his bath and bed.
Ross's days are very full with therapy and exercises, but it's definitely paying off. He's showing constant improvement, is more alert every day, and developing more skills. Thank you, all of you, for your continuing support, your healing thoughts and your prayers for Ross. His recovery is very much a group effort.
March 1, 2004 9:20 PM--Ross had a really busy day today, with physical therapy in the morining, including rolling on the floor mat and sitting up on the side of the bed w/o any support in back and merely a light touch from the therapist's hand for balance. Later, Betsy and Jeremiah took Ross in to Santa Rosa to see Dr. Swain, the speech pahtologist, who said she could see a lot of improvement in Ross since she last saw him two weeks ago. Betsy said they came home with a lot of new exercises for Ross to do to help him improve his swallowing and tongue movement, all a prelude to speech.
After their appointment, Betsy said they took Ross in his wheelchair to Montgomery Village and wandered through the grounds, looking at the flowers. Eventually they ended up in a coffee shop. At first Ross seemed upset, but one of his therapists explained later that scents can have a truly visceral effect on a person because the input goes directly to the brain stem. Ross was probably upset by the familiarity of the smells of coffee. Betsy said she explained to him where he was and that he would soon be able to drink coffee again out of a cup, but in the meantime, she shared her latte with him and he really seemed to enjoy it. She said that trips like this are good for him, though it's quite difficult to get him in and out of the van in the wheelchair, but they hope to make it a regular thing whenever he has an appointment in town. Ross used to love Peet's Coffee, so Betsy said they're hoping to take him to the new shop in Santa Rosa one of these days.
Thank you so much, all of you, for your kind notes, healing prayers and continual support of Ross and his ongoing recovery.
February 29, 2004 10:00 PM--I've been away since Thursday, but Betsy has continued to send me updates by email, so I'll post them verbatim:
Thursday, 2/26/04--"Ross had a good day with an awesome tilt table session with Jeremy--great head and trunk control and tracking. He is still eating well and now opening his teeth more volitionally. More moving his mouth as if he were talking softly and more of those looks that seem to say, "I have a fleeting memory of ? What is it?" Also more times of looking blue. Also more half smiles. All of this means he is more alert, and more cognitively functional. I can hardly wait to have him tell me about himself and what he is thinking and feeling.
I am so grateful to all of the people who have written to tell us they believe Ross will continue to improve. Thank you to all of them who have not forgotten Ross."
Friday, 2/27/04--"Ross laughed this morning and continued to laugh with me for a while. We looked at an album that Katie had put together for him and he laughed at some of the pictures. He also laughed at my dancing antics. He then fell asleep after eating a little of the butternut squash I doctored to make taste like pumpkin pie at 10:30 AM. Lisa gave him a bath in the bathtub around noon and he fell asleep afterward. Lisa finally actively woke him around six tonight. He was awake and watched television with me until around 8:30. He is now having a bath and will hopefully sleep through the night. It has been a while since he slept this much during the day."
Saturday 2/28/04--"Ross had a good day. Lisa had him on a mat on the floor for hours today. We propped him up when it was time to eat, then after digestion time, put him back flat on the mat. He hung out on his side for quite a while. He really seems to like being able to rub his cheeks on the mat. He rolled himself from lying on his side to his back seven or eight times. This was without any help. It was exciting to watch him moving himself.
I did his mouth exercises this evening, and then fed him a little more than 1/4 cup applesauce. He did very well. He also enthusiastically participated in brushing his teeth.
He then pedaled for about twenty minutes, but he was pretty tired and seemed angry. He is now back in bed and will hopefully sleep through the night as he did last night."
I just called Betsy and she said that today was a bit lower key. Ross seemed particularly tense. She asked him if he was in pain and he nodded "yes," so she asked if it was his head, but he didn't react. However, when she asked if it was his back, he nodded that it was. He's been doing more exercises on the floor, and that could be the source of his discomfort, but like Betsy said, short term memory problems are very common with brain injury, and Ross might not remember all the exercises he's done that have made him hurt. There's also the added problem that, as he becomes more aware of his condition, he will most likely feel more pain and be more depressed as he understands the extent of his injuries. There's just no way around that, as it's all part of his awareness.
His pulse was quite elevated tonight, at about 148, but after some ibuprofen, it came back down.
Thank you, all of you, for your continuing support and your healing prayers for Ross and his loved ones. He is recovering, slow though it may seem, but his injuries were so terrible that it's amazing how well he's doing. You are all part of a very amazing and powerful support system, and words alone cannot express our appreciation. Thank you.
February 25, 2004 11:50 PM--My apologies: I was not able to get this posted last night--Betsy said Ross is doing really well. His nurse, Lisa, was here today and they spent a lot of time with him working on the mat, rolling from his side to his back. After practicing for quite some time, Ross made it clear he wanted to roll to his stomach, not his back! He seems to really enjoy the time on the mat and definitely works at the exercises he's given.
Betsy said that, in the past week more than ever, she has really felt that Ross is trying to talk. He's working his mouth and tongue, laughing a lot and is very alert and in tune with what's going on around him, but she said she can feel his frustration at not being able to communicate. That frustration might be exactly what drives him.
The pulse-oximeter the Dillons were hoping for was donated yesterday by a thoughtful reader. Thank you so much! I've suggested to the Dillons that they give me a list of things Ross and/or his therapists can use, so I can update whenever something comes up. So many folks have unused equipment gathering dust in storage, items that could make all the difference for Ross during rehab.
Thank you so much for your continuing support, for your thoughtful prayers and healing thoughts for Ross and his loved ones.
February 24, 2004 9:30 PM--Ross had a really good day in spite of his small seizure last night, and his mom said he seems to be just fine. He had a great session with his physical therapist on the tilt table and also spent quite a long time with his new occupational therapist from Sonoma Valley Health Center. She evaluated his range of motion and Betsy said she had lots of new ideas. She is setting goals for Ross to be able to feed himself as well as to move himself from the bed to his wheelchair. Betsy said she is just fabulous, Ross obviously liked her and her plans are really exciting.
He's already come so far, I can't imagine him not being able to meet those goals. Please keep Ross in your prayers. Thank you for staying involved in his recovery.
February 23, 2004 9:15 PM--I just talked to Betsy. She said Ross had a really good day, but then, just before I called, he had a short seizure. This one only lasted about a minute and a half, and he was already looking better, so it obviously won't have the same debilitating effect as the four minute seizure he had last time. Other than the seizure, Ross had a really good day. Betsy said he's doing really well eating by mouth, though the bulk of his nourishment is still through his feeding tube. They took him to the hospital today for some blood work, which is routine, and he was fairly tense for the trip and appeared to be uncomfortable while they were gone, but he took a good nap when they got home and was a lot more relaxed. Overall, he's doing great. He's alert, aware of what is going on around him, and working hard in therapy. He sat, totally unsupported, on the side of the bed today, though it was for a very brief time. He balanced for an even longer period when the therapist held his hand. He is definitely recovering, though each step seems really small. Thank you, everyone, for your healing thoughts and your prayers for Ross and his loved ones.
February 22, 2004 8:40 PM--Betsy said Ross is doing great. He's doing especially well taking food by spoon...the bulk of his food is still given to him through a tube into his stomach, but he is able to open his mouth and swallow pureed foods now. He's also doing really well opening and closing his mouth over a rubber exercise tool the speech pathologist gave him just last week. He's able to open his mouth to release it, something he couldn't do before. His mom said he's very alert and, in spite of some muscle tone, doing really well. They're hoping to get him into the adaptive PE courses at the junior college later in the spring or summer. In the meantime, he continues to show improvement, slowly but surely, every day.
Thank you so much for your continued support and your prayers for Ross's recovery. As I noted at the top of the page, Ross's rehab team could really use a pulse-oximeter. It is a common medical device that many people may have laying around, but no longer need, and if you have one you could donate, it would definitely be put to good use. Thank you.
February 19, 2004 10:00 PM--Betsy said Ross is doing really well. He managed to eat 20 spoonfuls of applesauce last night, though he wasn't as crazy about the strained pears Betsy tried to give him tonight. Discriminating tastes? :-) He didn't sleep all that well last night, but Betsy said he was still really alert today and very responsive.
At one point she was working with his hands. He had his about six inches apart, palms down in loose fists. Betsy put her hands together between his and asked him to try and touch hers. She said he used his entire body to make the movement, but he managed to touch hers with his fingers three times. They're also doing a lot of speech therapy, working with a rubber piece that Ross can hold in his mouth, as well as massaging his gums to help increase the production of saliva, which in turn causes him to swallow and work the muscles in his throat.
Thank you all so much for your continuing support, your healing thoughts and your prayers. Ross's recovery is continual, his progress always forward, no matter how slow it may seem at times. Still, he continues to develop and improve his physical skills every day. You are all very much a part of his recovery.
February 16, 2004 9:45 PM--Betsy sent me a note this morning that said:
This morning, Ross not only raised his head for five minutes, mostly doing the shoulder work himself for three of those minutes, but after a rest he initiated raising his head on his own and without anyone touching him, holding his head up for 90 seconds.
Betsy
When I spoke with her tonight, she said that Ross initiating raising his head is a good sign. He was also able to eat some applesauce and was swallowing well, though he's had some problem with coughing due to drainage from his sinuses. Most likely that's due to the recent burst of flowering stuff following all the warm weather we've had--not evident today, obviously, with all the rain we're having!
At one point, Betsy put a marker pen in Ross's right hand. He looked at it, then proceeded to make some small marks on the page. She repeated the process with his left hand, and he made some marks with that one as well. Then Betsy wrote down four words and asked Ross questions about them. He nodded his head for yes, and got three of them right. She said the act of "nodding" was very quick and assured, quite a change from the slower movements he's been making.
One of the words Betsy wrote was "Ross." She said Ross moved his hand very slightly to acknowledge he recognized it.
He also spent time on the pedals, holding his handle bars. Betsy said he's doing really well and only needs a small amount of help to keep them moving. When he got stuck, he'd back pedal to build up speed and then move forward. Betsy said, "I saw him trying to remember." She reminded me that Ross had such a horrible bang on his head and suffered so much injury, that he is still "rewiring." His accomplishments so far, considering his injury, are amazing.
Thank you so much for your continuing support, your prayers and healing thoughts. You are all very much a part of Ross's recovery.
February 15, 2004 9:30 PM--Talked to Ross's dad tonight. Rusty said Ross had a really good weekend. He's doing well in all areas and has obviously regained whatever he'd lost from his seizures. He was alert and attentive, and he'd had a visit from sister Ariel, who gave him a hair cut. As Rusty said, Ross no longer looked like a straggly college kid...he's regained his "young athlete" persona! Dr. Adams, the chiropratic neurologist who has been seeing Ross, made a visit today. He sees Ross every couple of months and said there was noticeable improvement in many different areas. He is more balanced bilaterally, his eyes are focusing better and it's obvious there is more healing going on.
Rusty said that Ross was able to eat applesauce without a problem and also had some honey out of "honey sticks," which he really likes. All in all, he is continuing to show a lot of improvement.
Thank you, everyone, for your continuing support, for your prayers and good wishes.
February 12, 2004 9:15 PM--Betsy said they met with one of Ross's therapists tonight, Jeremy, to work out a schedule in order to time his more structured therapy. Ross is doing really well, but there just aren't enough hours in the day to do everything they want to with him! He had a great session on the tilt table, is tracking well and his left eye is finally coordinating with his right, something he's had trouble with since the seizure. He's doing really well, but as Betsy said, she wishes she could just wave a magic wand and get rid of the coughing, make him talk, make him well. It's such a long, slow process, but at least Ross continues to improve.
So much of that is due to the continuing support of all of you. Thank you for your prayers and your healing thoughts, and also for your words of encouragement. It means so much to everyone.
February 11, 2004 9:30 PM--Just a brief update to let you know that Ross had a good day, though he did get a bit frustrated with his therapy. When Betsy and I talked, we both thought it might be that people who work with Ross don't always take the time to tell him why they want him to do certain things. He's a terribly intelligent young man, and I can't imagine him doing anything without a darned good reason! Betsy said Jeremiah took him outside for a bit, but he got real congested from all the pollen in the air. Hard to believe that spring is already coming to northern California, but the acacia trees are blooming along with the almond trees, daffodils and narcissus and a whole lot of other sweet smelling things. In the meantime, I want to thank everyone, for your prayers, your healing thoughts and your support.
February 10, 2004 10:00 PM--Ross had another good day, according to Betsy. They had him on the tilt table early. Jeremy has been loosening the straps holding him against it, so his upper body had to do more balancing and he's doing fine. It forces him into more "trunk control." Jeremiah took him outside to enjoy this gorgeous Spring-like weather, although Betsy said Ross's allergies are giving him a lot of congestion. Just in the past couple days of warm weather, the acacia trees are blooming, almond trees, and all kinds of flowers and shrubs. When the seasons change, here, they do it dramatically!
Ross had more applesauce and is swallowing really well. The speech therapist is helping him work his tongue and jaw, and Betsy said he seems really close to vocalizing. Another thing he's showing improvement on is the pedals. Today Betsy, on the therapist's suggestion, played a CD that Ross used to listen to when he trained. It's real loud rap music with a strong beat. Betsy said he definitely responded to it today and was doing the pedals almost entirely under his own strength. He really got into it.
Betsy said he is close to doing them completely on his own, and seems really close to attempting speech. I am just so tickled with the progress he's making. So many specialists told Ross's parents that if he didn't respond in the first couple weeks after his injury, not to expect any improvement at all. Every day he shows us just a little bit more. It's truly amazing. Believe me, all of us know how much we owe you, his support group. Your prayers and healing thoughts are evident in every step of Ross's recovery. There really is no way to thank you enough.
February 9, 2004 10:30 PM--Betsy said Ross had a pretty good day. The physical therapist was able to get him sitting up on the side of his bed by herself, which means Ross had to be able to help her quite a bit to get himself in position. The speech therapist said he was moving his mouth and tongue really well, all a prelude to speech. When he worked on the pedals, he was pushing on his own with only a little help from Jeremiah as far as keeping his left foot on the pedal. Betsy said they got out Ariel's old gymnastics ball and put it on the bed, and Ross spent a lot of time moving it around with his foot. When they put him on his stomach, he was moving his legs really well and was very active.
Every night, I go back and reread what I've written, looking for typos (and yes, I imagine I miss a lot, but it's usually the end of a long day by the time I'm writing this!) and sometimes I am struck by how small and insignificant Ross's daily achievements seem. Then I think about where he was a year ago, a month ago...sometimes even days ago, and I realize how far he is coming, how great is his achievement, and what an amazing support group he has.
Thank you, all of you, for sticking with Ross throughout this long and arduous recovery. You are truly an amazing group of people.
February 8, 2004 10:20 PM--I apologize for not posting before now, but was away all weekend. Just talked to Betsy and she said the team meeting with Ross's therapists was absolutely fabulous. They got together without any politics or agendas other than what was the best for Ross. They discussed the original agenda for his care, and how they could change things to better accommodate his abilities now. A doctor who is a cyclist had called Betsy about visiting Ross, and was able to be there for the meeting, which was wonderful as he was able to give his perspective as well as some excellent suggestions.
Their main goals now are to find a neurologist who is willing to work with Ross, and also to straighten out the medications he is taking in order to avoid further seizures. He may need to be hospitalized at some future date so that doctors can monitor him while trying out some of the newer medications now available. As Betsy said, Ross really hasn't had a good chance at rehab while in such strong physical condition, but it's hard to imagine a situation better than what he is getting at home. The big difference would be the chance to work with new medications in a hospital environment.
One other thing Betsy mentioned is that Ross was very vocal last night, making lots of sounds that could have been words. His attendant was sure he heard Ross say "yes" a couple of times, and Betsy said he's obviously trying to make words when he moves his mouth and vocalizes.
Thank you for your continuing support of Ross and his loved ones. You can't possibly imagine how much you are appreciated.
February 5, 2004 8:45 PM--Note from Betsy: At 8:45 PM Ross had another big seizure--about 4minutes long. Ask people to pray that we can find a way to stop these frequent seizures.
Betsy
February 5, 2004 8:30 PM--Betsy said Ross slept really well last night but was toney most of today. She's not sure why his muscles were so tense, but thinks it may have something to do with his allergies. Lots of stuff is starting to bloom, and he's always had a tough time in the early Spring. He was coughing a lot during the day, but did manage to eat some more applesauce.
Tomorrow night the Dillons are holding a "team meeting" for all of Ross's therapists and caregivers. It's a chance to discuss the various therapies they're using, to determine their immediate and long term goals, and share information.
If you haven't read Ross's guestbook lately, please stop by and take a look. There's a very nice note from Jenna Prewitt--Jenna was seriously hurt shortly after Ross's accident, suffering similar serious injuries to her brain. She's made a most remarkable recovery, and whenever I read one of her wonderful notes, it gives me that much more hope for Ross's recovery.
Thank you, everyone, for your continuing support for Ross and his loved ones. You can't possibly imagine how important your are to his recovery.
February 4, 2004 9:00 PM--Betsy had to be away on business part of the day so Ross was with his nurse, Lisa, who said he had a really good day and was very alert and aware. This afternoon Betsy gave him about a quarter cup of applesauce which he was able to eat by spoon, and she said he handled it beautifully.
Please keep Ross and his loved ones in your thoughts and prayers. Every step, no matter how small, is a step forward.
February 3, 2004 8:30 PM--Ross didn't sleep much last night because he was congested and coughing, but he still managed to have a pretty good day. Rusty said he had an excellent physical therapy session. Jeremy, his PT, said, "When he's there, he's there," and today Ross was really alert and definitely "there."
When I talked to Betsy, she told me about Ross's visit to an eye doctor today. He had not been seen by either an optometrist or an opthamologist since his accident, and she'd noticed his eyes seemed irritated lately. She took him to their family optometrist just to have him take a look. It was difficult to do any testing as they weren't able to put Ross in the chair where all the machinery is set up, but the doctor was able to look into his eyes and do some minor tests on him. He concluded that Ross is a little nearsighted, something Betsy said he was aware of before the accident, but he also said he couldn't see anything grossly out of order with his eyes. He also told Betsy he'd do some research on a few questions she had. All in all, it was a really good experience. Betsy said the doctor was very flexible in his willingness to work with them and to work around the difficulties of treating a patient who can't answer questions. Betsy also said the entire office staff was just terrific.
This afternoon, Ross worked with the speech therapist and also did some pedaling. Jeremiah held his left knee a bit to stabilize him, but he was able to keep his ankles straight and worked really hard at pedaling. He's definitely getting good movement out of his left leg. Betsy said she's hoping he'll develop the same strength with the right if he keeps working at it.
If you get a chance, check out Ross's guestbook. There was a very nice note there from Jenna Prewitt's mom. Jenna was injured in an auto accident about the same time as Ross was hurt and she is making a very steady recovery. Her mom's note was a reminder to me of how many young people suffer from traumatic brain injuries. Please keep Ross--and Jenna--in your thoughts and prayers.
February 2, 2004 9:15 PM--Just talked to Betsy. We were going over Ross's schedule for today and it wore me out! Their days are so busy. Betsy said Ross had definitely recovered from his seizure and was very alert today. He had physical therapy in the morning, sitting on the side of the bed and balancing without support, working on his stomach and rolling back and forth, sitting at the table and using his arms to support his upper body, then back to bed for a quick rest. He spent some time outside during a break in the weather then worked on the pedals. Jeremiah supported his left ankle a bit but Ross was able to push the pedals and keep his feet aligned. He had another short rest then worked with the speech therapist, did some more pedal work, spent time on the tilt table, had a bath and was headed for bed when I called. Betsy said he's working really hard with his mouth, obviously pushing himself to try and talk. There's not a minute wasted in the day, and everyone sounds exhausted by the time it's over.
Betsy also said they'd received some welcome donations to Ross's fund. His care is terribly expensive, so I want to thank those who are able to donate--it's a tremendous help to Ross and his family, as the therapy and at home care is not all covered by insurance or state aid. All of you are so much appreciated, whether you've helped financially or not. Your prayers are every bit as important and very much appreciated by all of us. Ross is going to beat this. I can't imagine him not coming back, though his recovery has been unbelievably difficult and slow. He's an amazing young man, and that potential is still there and still fighting to return. Thank you so much for staying with him through this long, agonizing journey.
February 1, 2004 9:25 PM--Betsy said Ross had a good day, quiet but really nice. He was awake all day and very alert...as his mom said, he was just fun to be around. When she said that, I couldn't help but think that's how Doug and I used to think of Ross when he'd hang out here with Jon--that he was always fun to have around.
He was able to swallow some applesauce and when I called was doing really well on the tilt table. Betsy said he had a cough, but figures it's most likely allergies. His dad was working with him today on Yes/No responses by shaking his head and he seemed to be doing fairly well. He's getting better using the buzzer Jon built for him, and knows that he needs to lift his finger to make the buzzing stop.
Thank you so much for your continuing support for Ross and his loved ones. Your prayers and healing thoughts are such a huge part of his continuing recovery.
January 30, 2004--Ross had a lot better day today and wasn't nearly as tired. He smiled some this morning, after sleeping well through the night. Betsy said she still has to get up every three hours to turn him, but now that's only on two nights a week, as some very good friends have made a donation to pay for care at night for Ross that lets his mom get some sleep. The Dillons are still really dependent on donations for Ross's care, as therapy, nursing and attendant care are very expensive --very little of it is covered by either insurance or the state.
I talked to Rusty a bit, and he said Ross got mad at him today. Rusty and Ross's nurse, Lisa, were talking about finding balance in life, and Rusty made a quip about Ross going out for a bike ride, and taking such a long time to get back home. Rusty said Ross got really mad at him for his comment, something that implies understanding of a fairly complex set of issues. Just another sign of his ongoing recovery, but an important one.
Thank you, everyone, for your continuing support, your prayers and healing thoughts for Ross and his loved ones.
January 29, 2004 10:50 PM--Ross was still really tired today, probably still recovering from his seizure the other night, but he still did well in therapy and managed to hold his head up for over five minutes unassisted. Worked well with the pedals and is continuing to show improvement.
Betsy said they continue to back off on his Clonazepam with the goal of eventually weaning him from it altogether. Please remember Ross in your thoughts and prayers. Thank you.
January 28, 2004 7:45 PM--Ross was kind of tired today, but still had a good day. Held his head up while on his stomach for over five minutes. He's swallowing well, nodding and/or shaking his head in response to questions, so communication is coming along. Betsy said he looks great and continues to show improvement. She's been giving him applesauce to eat...he had some trouble swallowing it today and she said she could tell he was feeling sort of down because of his "failure." Other days he does just fine with it, but it's a complex set of muscles that allow a person to swallow even semi-solids like applesauce.
Thank you all for your continuing support, your prayers and healing thoughts for Ross's recovery.
January 27, 2004 8:35 PM--When I called tonight, Ross was laughing. Betsy said he laughed off and on all day long. She wonders if it's a result of their backing off a bit on the Clonazepam, which tends to make him a bit dopey. He was awake all night long, or at least every time Betsy checked in on him. She said he was just lying there in bed, his eyes wide open. She said that his mind appears to be clearing and that he's definitely more alert. And laughing. I asked if his laughter sounded the way he did before the accident. Ross always had such an infectious laugh, but both Betsy and Rusty said he sounds more like he did when he was a little boy. That would fit in with many theories of recovery from brain injury, in which the patient essentially has to go through all the same stages from infancy back to adulthood.
Ross also had terrific therapy sessions today and did really well on the pedals. Generally his right ankle tends to turn out, but today he kept both legs and feet in a perfectly neutral position and was pushing with both legs.
Betsy also said that Jeremiah was working with Ross when I called. They are so lucky to have found him--Betsy said Jeremiah is absolutely wonderful with Ross and seems to know exactly what he needs.
I love calling Ross's folks on nights like this! There is so much energy in their voices and I know they've seen even more progress than I manage to get into the update. Even so, I look forward to the day when Ross can give me the nightly report on just how far he has come. At this point, his recovery is little short of amazing. Thank you, everyone, for your steadfast support.
January 26, 2004 9:00 PM--Today Ross received the hand-held buzzer that Jon made for him, and Betsy said he quickly figured out how to "stop" the buzzing...which sounds like a dying cow. I think I'd want to stop it, too! Hopefully, he'll be able to use it to help him communicate.
Ross has been having some very uncomfortable periods in the evening, sweating heavily, some vomiting and generally feeling horrible. Betsy said they finally traced it to withdrawal from one of the drugs he's been on to fight the tone in his muscles and help him sleep at night. Clonazepam is highly addictive and Betsy said they'd been reducing it to try and wean Ross off of it. Even though they were taking it down in very small amounts, it was still too rapid, so they've backed off a bit and will drop him in even smaller increments.
The sad thing is, the drug probably wasn't all that necessary in the first place, as they've discovered melatonin works even better. It's going to take them until September at the slower rate to get Ross completely off the drug.
Betsy said in spite of the discomfort and the problems with his dosage, Ross still is doing really well. They have a device he can pedal, and he worked on it today, pushing especially well with his right leg.
Thank you for your prayers and healing thoughts, for Ross as well as for my husband. He's home and resting tonight and I do appreciate your kind thoughts for his swift recovery.
January 25, 2004 8:35 PM--Ross was tired much of today, which isn't unusual, considering the large seizure he had last night. That always seems to take a lot out of him. He did have a very special visitor today, though. Roger was injured 13 years ago in a serious car accident, but has made a remarkable recovery. Betsy said they talked a lot about attitude and how the people who could accept their injury and look for ways to get past it were the ones who do the best. Those who dwell in the, "Why did this happen to me?" philosophy seem to have a tougher time.
Ross did appear to be experiencing some pain later in the afternoon, so Betsy said they gave him some ibuprofen and he took a long nap. He felt much better when he woke up. This evening, he was alert and almost back to his old self, so he's recovering quickly from the after effects of the seizure.
My husband is having surgery in the morning, so I would ask you to hold the good thought for him as well as for Ross and his loved ones. I look on all of you as a very powerful support group, and hope you don't mind my asking. Thank you.
January 24, 2004 8:40 PM--Ross had a seizure tonight, just before I called. Betsy said it was a big one, lasting about two and a half minutes. They must be so scary for everyone involved, but in the past, whenever Ross has had a seizure, it's been indicative of more improvements and another step up in his recovery. Please keep him in your thoughts and prayers tonight, and his family, as well.
January 23, 2004 8:00 PM--Just a brief update to tell you that Ross had a good day. His nurse Lisa was there most of the day and worked with him. Rusty and Lisa managed to re-arrange Ross's room using some donated book shelves. Betsy said she read to Ross while they did all the furniture moving and such, and she said it looks great. Ross did really well with his therapy, especially swallowing.
Thank you so much for keeping Ross and his loved ones in your thoughts and prayers. He's come so far since his injury.
January 22, 2004 9:00 PM--Betsy said today went well. Physical therapy with Jeremy was really good, with Ross standing completely upright at the tilt table, then sitting in a chair at the dining room table and holding his head up while supporting his weight on his arms on the table. As Betsy said, every day is different, but the progress is always forward. Ross even took some sips of coffee tonight and Betsy said he really seemed to enjoy that.
Our son, Jon, is working on a buzzer built with a computer mouse so that Ross can use it to communicate. Jon called tonight and "played" the sound...the thing sounds like a dying cow...mad cow, maybe?-- something that should appeal to Ross's off beat sense of humor. One of the mouse buttons will vibrate and the other button will make the sound. Jon said it's really easy to make it work, so we're hoping it will give Ross an avenue of communication.
If it does work and if Ross is able to communicate, it can only mean giant steps forward. Please keep him in your thoughts and prayers. Your support has done such amazing things for Ross during this long recovery.
January 21, 2004 8:00 PM--Betsy was talking so fast about all the things Ross did today that it's hard for me to read my notes! Anyway, sounds like he had a wonderful day. He spent time on his stomach and was lifting his head and upper body totally on his own for at least the first two minutes of the four minutes he was up. An hour later the physical therapist arrived and had Ross rolling from his side to his back and also from back to side. He was also sitting on the edge of the bed without support. The therapist said he showed much less tone in his muscles than is usual, though the tone may increase as they are cutting back on some of his medications.
Part of what causes the tension and tone is the patient's inability to sense where his body is. As someone with multiple sclerosis, I can really relate to that. There's a definite "disconnect," which is really troubling when you try to move and find your "place" in space. It's hard to explain, though, since it's something I deal with on a regular basis, I definitely understand what Betsy is describing. As my neurologist so aptly described it, my brain doesn't know where my feet are. In Ross's case, it's probably more like his brain doesn't know where his body is. The constant need to stabilize within an unknown space has got to be totally disconcerting for him. It's amazing he does as well as he does.
Another thing that was new today was the fact Ross ws using his arms, moving up on his elbows to lift his head, and also moving his right leg up to stabilize himself. He's beginning to use a lot of different muscle groups, something that requires more sophisticated messages from the brain. Betsy said another exercise they worked on was to put him in a chair and move him close to a table, where he rested his weight on his arms. So many new things! I get so excited when I talk to Ross's folks every night--there is almost always something new to report, another step he's taken in this long and often frustrating recovery. When he takes as many giant steps as he has this week, though, it's really fun to write my updates!
Thank you so much for your continuing support and your wonderful thoughts and prayers for Ross's recovery.
January 20, 2004 8:30 PM--I talked to Ross's dad, Rusty, tonight, as Betsy was getting some much needed rest. She sounded exhausted last night when I called so I'm really glad she got a nap this evening. Rusty said that Ross had a good night's sleep and Betsy had gotten up early to feed him so that he'd be ready for therapy. He had an excellent therapy session, working on the tilt table and also sitting up on the low bed. That's a great exercise for his upper body, core strength--balancing in an upright position takes a lot of effort, requires many muscles and a lot of mental adjustments for balance. Ross is doing really well.
Later in the day, Rusty said Ross seemed kind of blue and was very tired during speech therapy. We talked about that for awhile, wondering if his awareness of his limited abilities is depressing him, now that he's becoming more alert. It's difficult to say, but would account for a lot of the sadness his parents sense about him.
As tough as it is, though, that awareness is a sign of healing. Please continue to pray for Ross, to think healing thoughts and continue your fantastic support. You are all a very important part of his recovery. Thank you, too, for the wonderful notes you've sent, both privately and to the guestbook. Your comments are truly inspiring.
January 19, 2004 9:20 PM--Just a brief update today. It was a holiday so there was no therapy other than what Betsy and Rusty did with Ross. Betsy said Ross seemed very sad today. She doesn't know why, for sure. There are so many variables, but I know it's got to be so tough for his parents when he has a day like this and can't communicate what he's feeling and thinking. Hopefully, he'll feel better tomorrow.
Thank you for your thoughts and prayers, and for your very kind notes of support. It means so much to Ross and his loved ones, especially now, after so many long months. You're all amazing, to continue to be here throughout Ross's recovery.
January 18, 2004 8:45 PM--Talked to Betsy and she said it was a busy weekend, though Ross seemed sort of blue for much of it. Much of that is probably due to increasing awareness--as Betsy said, there's a lot for him to be sad about. While so many of us can see what he has regained since his accident, he's going to see it from the perspective of what he's lost. It must be horribly frustrating for him.
Betsy said she got out the hacky sack ball and played it with Ross for awhile, placing it on his right hand. He was able to toss it off at least a dozen times. She also used the little rubber frog that Ariel gave him for Christmas. She'd put it on his knee and he was working really hard at balancing it there when he moved his leg. They're constantly looking for things to get Ross interested and participating. Company is always good, and it's really good when his friends come by to see him.
Betsy said he's looking really good, very healthy and alert. He really reacts positively when Katie comes by. She had to work late Saturday, but was able to be there today.
Please remember Ross in your thoughts and prayers, and if you can make it by to visit, check with his folks and find a convenient time for a visit. You never know when someone he's ridden with or been friends with will be the spark that helps him break through. If you're on a ride over the Oakville Grade, you're going right by Ross's house. I've checked with his folks and they said Ross really responds well to visits from his friends. If you want to visit, just email Betsy ahead of time at [email protected]. Thank you so much for your continuing support.
January 15, 2004 8:15 PM--Just a brief update tonight to let you know that Ross had a really good day. He had a doctor's appointment with the doctor in Sonoma for a check up and chest x-ray (routine only, no problems) and excellent sessions with speech therapy and on the tilt table. Betsy said she feels as if he is so alert now, so aware, that it's only a matter of time before he starts talking.
I know exactly what she's talking about. When you look at Ross, you know he's aware and so close to making a breakthrough. Please remember how far Ross has come and how far he still has to go, keep him in your prayers and your thoughts, and thank you, all of you, for staying with him through this long recovery.
January 14, 2004 10:00 PM--Betsy said today went well and Ross was feeling better. He spent some time on his stomach and held his head up a couple of times for a few minutes, but the really neat thing is that he moved his right knee forward to help brace himself so that he could raise his head. This is a totally independent movement and something he hasn't done before. He also had a massage today and obviously enjoyed it. A couple of his friends from grade school stopped by to visit. Betsy said Ross was very attentive and she wished she knew what he was thinking while they all sat and talked about old friends all of them knew. He also had a good speech therapy session, so it was definitely a good day.
Please remember Ross in your thoughts and prayers. Your support is extremely important to his continuing recovery.
January 13, 2004 8:15 PM--Ross was fairly tired and tense today, but he still appeared to be working on his speech therapy exercises even after the therapist left. Betsy said Ross hasn't been able to move his tongue beyond his teeth since he was injured. Whether the cause is neurological, from the brain injury, or possibly a result of scar tissue from the trach, whatever the reason, something has affected his ability to move his tongue. In order to speak and eat, he needs to regain control, and he can now push his tongue out past his teeth. He is having to relearn a lot of movements, and using his tongue is one of them. Betsy said he often continues to do his exercises now on his own.
We were discussing how far Ross has come, and Betsy said that sometimes, Ross will look at her with such a sense of longing, as if he knows how badly he is injured and how far he still has to go. I can't help but think how frustrating this must be for him, but then I go back in the website and read where he was just a few months ago, and realize what remarkable progress he is making.
Thank you so much for your continuing support, your prayers and your healing thoughts for Ross and his recovery.
January 12, 2004 8:30 PM--Betsy said Ross was a little tired today, though he did well in both speech therapy and physical therapy. The PT worked with having him sit on the side of the bed, and he's able to balance really well now with minimal support. It requires his ability to shift his weight and balance from side to side, something he's still relearning. He's also rolling from his side to his back and doing most of the move on his own.
Tonight when he was on the tilt table, Betsy said he appeared to be having some difficulty. After a few unsuccessful exercises, Betsy asked him, "Are you mad." He shook his head. Then she asked, "Are you sad?" and he didn't answer. During his exercises, she said he seemed really frustrated, and when they started unstrapping him to take him down from the tilt table, Betsy said they realized the strap holding his legs was too tight and had been abrading the skin. She said she realized then that he was aware he was hurting but had no way to tell them. As frustrating as this must be, it's probably the sort of thing that will eventually force Ross into communicating.
I just went back and looked at the website updates from a year ago. It's amazing how far Ross has come, and shows great promise for the future. It's as if he is so close to breaking through...thank you, everyone, for your thoughts and prayers and our amazing support for Ross and his loved ones.
January 11, 2004 6:45 PM--Just talked to Betsy and it sounds as if Ross had a terrific weekend. The growth and healing is coming in leaps and bounds, now, with so many improvements. It's really exciting. On Friday Ross's speech therapist started working with the Yes/No cards, asking Ross to look at specific cards. He did five and Ross got three of them correct. He's not going to start charting it until they work up to ten drills, but for the first time, this was really great.
On Saturday, Lisa, Ross's nurse, brought her dog Ginger over with her. Ginger is a chihuahua who loves to play with Ross's dog Josephine, who is a chocolate lab/Chesapeake Bay retriever cross. The play together really well (something I have a difficult time picturing...) and Ross really enjoys watching them.
Betsy said they got Ross on his stomach to relax him and he initiated raising his head, actually moving his right hand out to the side to help support himself. He held his head up without support, at one point holding the position for five minutes.
Another exercise they're doing with Ross is having him look in different directions while he's on the tilt table. He's belted under his arms for support, but it gives him a lot of freedom to move his shoulders and head. He's looking up and around in whatever direction he's directed to look, and doing really well.
Betsy said today went just as well, including a few turns around the driveway in his wheelchair when it was warm out.
Every time I call, it seems that Ross has shown more progress. He's definitely healing and, though it's a long, slow road, recovering. Thank you, everyone, for your continuing support for Ross and his loved ones.
January 8, 2004, 10:20 PM--Sorry for such a late update--I'm trying to meet a book deadline and lost track of time! Just talked to Ross's parents and they said he had a really good day. He was a little tense during the day but fine tonight. His speech therapist said Ross's sessions yesterday and today were his best ever. Betsy said she also noticed Ross doing some of his mouth exercises on his own early in the day. He had a small seizure this evening, but Betsy said there were all there with him and he handled it well. She said she wonders if the seizures might not be triggered by his recovery--the fact that, as his brain's wiring heals, there is more and more energy pulsing through his nervous system. Totally unscientific, but sounds sensible! Ross remained very alert throughout the seizure, which consisted mostly of his eyes blinking rapidly and a bit of tremor in his hands.
He was completely upright on the tilt table again tonight, with his feet flat on the floor, and the therapist had Ross following with his eyes, to the point where Ross even bent over at the waist and then straightened back up. He's looking down and diagonally and righting himself. The therapist said it's all a sign of his vestibular integration returning--the ability of eyes, brain and the balance center in his ears beginning to work together again. In my mind, I tend to think of it as his internal gyroscope getting back into working order.
My next update will be Sunday night. Thank you so much for your continuing prayers and healing thoughts for Ross and his family.
January 7, 2004 9:00 PM--Not too much to report tonight. Ross seemed tired today, probably because he worked so hard yesterday! Betsy did say he woke up from a nap around nine this morning, smiling and laughing. He had a great speech therapy session, and when I called he was sitting at the dinner table while the family ate, looking very alert and watching everything. Betsy said there were a few instances today where he did seem very upset, but she is convinced that is part of his awareness of his condition. Hopefully, that awareness will help drive his recovery.
Thank you so much for your continuing prayers and support.
January 6, 2004 8:20 PM--Just talked to both Betsy and Rusty and they said Ross really had a productive day today. Rusty said he had an amazing session on the tilt table. Rusty and Jeremiah had Ross completely vertical with all his weight on his feet. He held himself very straight and was extremely alert, following Jeremiah about the room by turning his head and moving his eyes, tracking really well. Betsy worked with him this morning when she and Jeremiah put him on his stomach and he was able to lift his head and hold it, though he didn't do the "marathon" type lift of the other day. Still, he's starting each morning with a strong base from the day before, so each day he is able to show improvement. As Betsy said, "The more we do, the more alert he becomes." She said she fully believes that he would still be in more of a "twilight" existence if it weren't for the constant stimulation of therapy, but so long as they can continue working with him and he continues to add more skills as each day unfolds, his recovery will continue.
Betsy said they constantly remind Ross how well he is doing, praise how hard he is working, and remind him that God has a plan for him. Then Betsy said they remind him he's doing intervals all the time, and his training is really important. His is truly an amazing story, but no more amazing than the tenacious group of people who have followed his recovery and are praying for him and offering their support. Thank you, all of you, for staying with Ross's team.
January 5, 2004 8:45 PM--I just talked to Betsy and it sounds as if Ross had a terrific day today. Started out with physical therapy and work rolling from his back to his side and sitting on the edge of the bed. The therapist said that Ross is putting out about two thirds of the effort it takes for him to roll, which is really great. It shouldn't be too much longer before he can do it on his own. He's also balancing quite well with minimal support while sitting on the side of the bed. Betsy said that once he's got his feet properly positioned, he's doing really well holding himself erect.
He also spent time on his stomach and had an excellent speech therapy session today. Betsy said she went out to run some errands while he was napping, but the therapist with him when he awoke said he woke up laughing. I would love to know what he's dreaming! All in all, it was a really good, productive day, and a pretty terrific way to start out the new year.
If you are considering sending a taped greeting for the video Melanie and Jon are making for Ross, please do so asap. The address to contact Melanie is at the top of this page.
Thank you all so much for your continuing prayers and support of Ross and his loved ones. You are the most amazing support group ever!
January 4, 2004 9:00 PM--I'm back from a few days off and just talked to Betsy. Ross is doing so well! Betsy said she'd been reading to him--a series of books called "The Mitford Series" about an Episcopal priest in a little town in N. Carolina, by Jan Karon. Ross really seems to be enjoying the stories.
Ross is still really congested and Betsy said they decided to start putting him on his stomach without the wedge under him. He seems to absolutely love it! He just totally relaxes and enjoys himself. Betsy said they did it twice yesterday.
Tonight he was sitting in his chair and they got his right arm to relax and rest on the arm rest. Usually that arm is drawn up tightly to his chest, so it's a pretty big deal when he can totally relax it. Betsy said she also put a glass in his hand and he held it.
According to his mom, everything about Ross is encouraging. He's sitting straighter, his back is straight, he is more relaxed and very alert. I occasionally look back through the site and see how terribly injured he was, and how far he has come, and it makes me realize that he is truly on his way to a full recovery. Thank you, everyone, for your faith in Ross's will to come back, for your unfailing belief in miracles, and for your constant and heartfelt prayers for his recovery. It's all working.
December 31, 2003 11:20 AM--It's my last update for the year, and it's so amazing to realize how far Ross has come. I had a call from Rusty telling me they'd received the latest results of Ross's CT scan and the doctor said the ventricles in his brain, though still larger than they should be, show significant improvement since his last scan in May. They are substantially smaller and definitely showing signs of healing.
Betsy said Ross is continuing to do well. He moves his feet easily into position on the tilt table, does well on his stomach at raising his head, turning it in both directions, occasionally rubbing his face on the bedding, holding his head up for long periods of time. His physical therapist is now working with him on turning from his back to his side, a much more difficult movement than from side to back, and he's able to accomplish it with some coaching.
Another neat thing--when his caregivers, Jeremiah and Eleanor, were bathing him, Jeremiah was teasing Ross with a small plastic frog Ross had gotten from his sister Ariel for Christmas. Betsy said Ross was laughing out loud, the first time his laughter has been an immediate response to a specific act, responding appropriately in the "here and now."
All in all, it's been a pretty momentous year, and I can't help but wonder just what amazing things lie ahead for Ross. He's doing so much better than his doctors ever expected. His family and friends, however, have never doubted he would recover. Thank you for your unwavering support, for your prayers and healing thoughts. You are all a wonderful part of his ongoing recovery.
Our best wishes to all of you for a healthy, happy new year.
December 28, 2003 11:00 PM--Talked to Betsy earlier and she said that Ross had a good day. His friends Jon and Melanie Moore stopped by to visit, and he was definitely watching them, especially Jon. Also, when Betsy was working with him during therapy and would give him instructions, it was obvious he was doing his very best to follow directions.
Ross has gained so much this past year. If you go back and read some of the older posts in the website, it's really amazing to see just how much he's grown.
Thank you, everyone, for your daily prayers for Ross and for your healing thoughts. I may not be updating a lot this week as our schedule is really hectic, but I want to thank all of you for being a part of Ross's team.
December 27, 2003 10:50 PM--Ross had a good day today, with a good session on the tilt table and also holding his head up from a position on his stomach. He continues to show improvement on a daily basis. If it seems at all slow, go back and read the posts from a few months back and you'll see how far he's come.
Ross continues to improve. He couldn't do it without your support. Thank you so much.
December 26, 2003 8:45 PM--Betsy said they still had a houseful most of the day, all people who have known Ross for most of his life. She said he watched everyone very intently, especially at dinner last night. Today he did really well, was able to lift his head while on his stomach and hold the position for three minutes, two seconds the first time, three minutes twenty-three seconds the second time. He did this on his own, without being instructed to lift.
Katie arrived for the weekend, and Betsy said Ross really watches her. At one point, Betsy said she thought he might be getting tired and asked if he wanted to go to bed, but he shook his head "no." His communication skills are definitely improving.
Please remember Ross and his loved ones in your thoughts and prayers, and be extra careful if you travel this holiday season. Traffic is horrible! Be safe.
December 25, 2003 9:45 PM--Merry Christmas to all of you! The Dillons had 14 at their table tonight, including Ross, for a very enjoyable Christmas dinner. I just talked to Betsy and she said Ross paid attention to all the activity and was interested in the gifts in his stocking. He had a great session on the tilt table, as well. Therapy goes on, holiday or not.
We want to wish all of you the very best this holiday season. Thank you so much for keeping Ross in your thoughts and prayers--and in your lives. Have a safe and joyous holiday and all the very best in the new year.
December 24, 2003 9:30 PM--Betsy said Ross had a terrific day. He was on his stomach and held his head up for seven minutes, three seconds, then after a brief rest held his head up again for about thirty seconds without any encouragement or orders to do so.
He took a nap this afternoon and when he work up, he stretched and started laughing. He also had a good session on the tilt table.
This is indeed the season for miracles. Please, if you pray, pray for Ross, for his recovery and for a wonderful year ahead for him in 2004.
December 23, 2003 9:15 PM--Talked to Rusty tonight and it sounds as if Ross had a really full day. Physical therapy in the morning, and he's sitting up on the side of the bed, holding his head up and looking around, keeping himself upright with no problem so that, as Rusty said, they just "expect" him to do it. This is such an amazing sign of progress! He also had a trip into Marin today for a CT scan to check on the shunt. All is fine and he handled the trip well, though Rusty said he was pretty tired by the time they got home again. Rusty said that when he travels he is very aware of his surroundings and seems to pay attention to all the activity outside the van, a huge difference from just a few months ago. A year ago, his family was thrilled when he was able to respond by occasionally moving his head and tracking...now that is behavior they expect from him. It's been a pretty amazing year.
Thank you so much for your continuing support, for your prayers and healing thoughts for Ross and his family.
December 21, 2003 9:00 PM--Just a brief update to say that Ross is doing well, he's having excellent sessions on the tilt table and is very alert. He's also vocalizing more, making sounds, though not yet able to say words. He's had a second visit from a chiropractic neurologist who offered some suggestions using the tilt table--turning it (it's on wheels) while Ross is on it, a quarter turn at a time.
Your continuing prayers and support are so important to Ross and his loved ones. Thank you so much for thinking of him, and for keeping him in your prayers.
December 18, 2003 9:45 PM--Ross had a really good day. Betsy said he did well on the tilt table. He was up for about an hour and Jeremy, his therapist, worked on his right arm and hand a lot. Betsy said it's definitely helping, as Ross is now holding his hand in a normal position, rather than drawn up to his chest. He's also scanning well, following the people in his room as they move around. His therapist said he actually needs more challenges at this point, so I imagine they'll come up with something!
One new thing: Betsy has been in communication with a reader from the list who suggested grapefruit seed extract for some of Ross's problems with drainage and congestion. Betsy found a spray at the local health food store and tried it on Ross, and in just a day and a half his congestion is clearing and the white coating he's had on his tongue is gone. Thanks, Caroline! We have learned so much from our readers...it's absolutely amazing.
Thank you, everyone, for you kind thoughts and healing prayers for Ross and his loved ones. Also for your most helpful advice!
December 17, 2003 8:45 PM--Just a brief update to let you know that Ross had a good day. Held his head up for 5 minutes, 35 seconds while on his stomach and had an excellent session on the tilt table. Betsy said they intend to work more with him sitting on the edge of the bed after the holidays. That exercise requires more balance and Ross's active participation, whereas the tilt table tends to be a more passive exercise.
I asked Betsy how Ross was doing at moving himself while in bed. She said that when she turns him, he usually extends his left leg, which he did when she got him settled last night. However, when she went in to turn him about three hours later, he'd not only drawn his left leg up close to his body, but also turned over more on his side. May not sound like a lot, but it's a huge difference from what he could do just weeks ago. He's growing stronger and showing constant improvement. Lots of small steps, but forward steps just the same.
Thank you so much for thinking of Ross this holiday season. We appreciate your healing thoughts and prayers, and your support more than you can possibly imagine.
December 15, 2003 9:10 PM--Betsy said Ross did really well this morning, but he had a petit mal seizure this afternoon while on the tilt table. It wasn't too bad--lasted only about a minute and a half--but still, it's unsettling. However, Betsy said the seizures seem to happen when Ross has been showing a lot of advances, as if more connections are being made and more healing is taking place, so they really might, in some ways, be a positive sign. Possibly intense effort triggers a seizure? It's amazing how little is still known about the human mind.
Thank you so much for continuing to follow Ross's recovery, for your prayers and support and healing thoughts for Ross and his loved ones. This time of year, especially, when everyone is so stressed out and busy, your kindness and concern are really important to all of us. Thank you, too, for your kind notes and wonderful suggestions. Betsy has said on more than one occasion how much she has learned from the people who read Ross's story. You are all very much appreciated.
December 14, 2003 8:20 PM--Talked to Betsy a bit ago and she said Ross is doing well. He held his head up while on his stomach for almost five minutes, even though he was still tired from his 9 1/2 minute time on Thursday, he's having terrific sessions on the tilt table and doing well with mouth exercises that help him control tongue and mouth movement.
This time of year, everyone is so busy with holidays and life in general, and I wanted to take the time to thank all of you who remain so supportive of Ross and his loved ones. You mean so much to his ongoing recovery. Thank you for your healing thoughts and prayers, and for your most steadfast perseverance. There's a lot to be said for a really super stubborn support group! Thank you.
December 11, 2003 8:30 PM--Got this really cool email from Betsy this morning:
"This morning, Jeremiah and I put Ross on his stomach, had Ross tell us when he was ready to start by lifting his head, and started the timer when we started the exercise. Ross held his head up for 9 minutes, 34 seconds. After a break, I told him it was his choice whether to try again, since he had done an amazing job the first time. He held his head up for 2 minutes, 15 seconds the second time. That is our guy!!!
Betsy"
When I called this evening, Betsy said she hadn't expected Ross to do well because he'd had such a tough week, so both she and the therapist were surprised at how long he held himself up. The most incredible thing, according to Betsy, is the fact that Ross appears to be aware how well he's done in the past, and keeps trying to "beat his time." Every time they do this therapy, he goes a bit farther.
Thank you, all of you, for your constant and unwavering support. Some of you have been a part of "Team Ross" for over a year and a half now, many of you found the website at a later date, or didn't hear about Ross's injuries right away, but all of you contribute to the energy and the power that helps him. There is no way to adequately express how important you are to Ross's recovery. Your prayers, your healing thoughts, your kind messages as well as your support are helping him along this most amazing journey. Thank you.
December 10, 2003 9:10 PM--Betsy said Ross had an "okay" day...he was tired--most likely still feeling the effects of his seizure the other night. He did, however, have excellent therapy sessions with both the speech pathologist and the physical therapist who had him sitting up on the edge of a futon, unassisted, today. He's regaining so many of the motor skills we all take for granted, but each small improvement is a huge step forward in Ross's recovery.
December 9, 2003 9:00 PM--Betsy thought Ross might be fighting a stomach bug as he seemed kind of uncomfortable this morning, but they still managed to get to the hospital at Sonoma Valley for his monthly blood work and check up. He did well with physical therapy, and Betsy said they'd heard from the chiropractic neurologist who was very excited about Ross's progress so far. Lots of positives for him, which is always good news.
Thank you so much, everyone, for your healing thoughts and prayers for Ross and his loved ones. You are very much a part of his recovery.
December 8, 2003 9:30 PM--Last night, after I talked with Betsy, Ross had a pretty severe seizure. It lasted about 4 1/2 minutes, but at least he didn't seem to suffer any lasting effects from it. He was really tired today, but otherwise okay. Betsy said the seizures always seem to occur after a really eventful day, or before something special. Maybe they're a sign of the healing that's taking place. It's so hard to know. He's very alert and his mouth movements are really good, but he's still got so far to go.
Thank you so much for you thoughts and prayers and especially for you really kind notes. They are really important to Ross and his family.
December 7, 2003 5:35 PM--I just returned home after a weekend away and downloaded the first pictures of Ross laughing since he was hurt. Those of you who knew Ross before his accident know that laughter was as much a part of him as breathing. Rusty took these photos today when Ross woke up from his nap and began to laugh. Betsy said they know it was "interactive," because when she and Rusty laughed, Ross laughed even more.
He's had such a good week, with excellent sessions on the tilt table, stretching and rolling, working with his various therapists, but I imagine there's not much that could have made his family happier than to hear Ross's laughter again.