March 24, 2003-June 6, 2003 at Kentfield

June 3, 2002---

March 2003-June 2003
Kentfield

Thanks to Murphy's Irish Pub, 464 First St. East, Sonoma, CA for their TRIVIA SPECIAL Fundraiser for Ross.

Many thanks to Cathy Justl, Resident Director at Santa Clara University for the Modern Perspectives Residential Learning Community, and The Community Council, or hall government of Dunne Hall, for their wonderful fund raising Penny War between the floors. The students have elected to donate all of the money collected to the Dillon Family Fund, now called the Go Home Foundation. I have to agree with her when she describes her community as "truly wonderful students." They had a very successful fund drive. Thank you all, so much!

~*~*~*~

Ross Dillon
PO Box 1509
Glen Ellen, CA 95442

Thank you to everyone who has so generously donated to the Dillon Family Fund, now called the Go Home Foundation.
Rusty, Betsy, Ariel and Liz have asked me to extend their appreciation to each and every one of you.
Gifts to the foundation are used by the Dillon family to help Ross.



Please note: This information comes from family and friends at Kentfield Rehabilitation Center, not the physicians or therapists. It is based on my understanding of what I'm told. I apologize if I have misinterpreted any of the facts given to me, and will try to keep everything as factual as possible

June 6, 2003 9:00 PM--I talked to both Betsy and Rusty tonight. They were at home, getting things ready to bring Ross home tomorrow. He had a pretty good day today, and Rusty said it's really looking positive for the move home. His room is ready, the hospital bed installed, the ramp ready to set up, and they'll be bringing him in the van. Rusty said lots of people from the staff at Kentfield stopped by Ross's room today to say good-bye and wish him luck. He's scheduled to be discharged at 11:00 AM tomorrow.
   One thing Rusty asked is if anyone knows of a good acupuncturist in the Sonoma/Glen Ellen area. They really want to find an acupuncturist to work with Ross, as they felt it made a huge difference in the amount of spasm and tone in his muscles. He was getting acupuncture at Herrick but Kerrick wouldn't allow it. He's been really "toney" lately.
   This is a big step for everyone. Please keep Ross and his loved ones in your thoughts and prayers, especially mid-morning tomorrow when they take him home from Kentfield. He's been away for just over a year.
   I will be starting a new page tomorrow night, just as Ross is beginning a new page in his life. Thank you so much for following his recovery and keeping him in your prayers.

June 5, 2003 9:00 PM--Ross will be going home either tomorrow or Saturday, depending on when his folks can get an aide to come in to help. The ventricles in his brain are much reduced in size and, as Betsy said, the timing is right. Kentfield is really full right now, so it's a good time to get Ross home where they can take care of him. He had a great day today: he was very alert, looking around the room, obviously aware of his surroundings. He closed and opened his eyes on command and did really well.
   Please keep Ross in your thoughts and prayers. I really believe that going home is going to be so good for him.

June 4, 2003 9:00 PM--I got a chance to visit Ross very briefly today. It was such a change to see him without the trach. His mom and friend Shannon had him outside in the shade at Kentfield when I got there. He definitely seemed to recognize me when I greeted him. I got to see the new van and Betsy showed me how the lift and all works. It's really great. Barring any complications, they'll be taking Ross home in it on Friday.
   Betsy said they got him up in the tilt table today and he was able to lift his head and look around. He's got a new roommate and seemed very interested in what was going on in the room.
   Thank you again for remembering Ross and his family and fiancée in your thoughts and prayers.

June 3, 2003 9:30 PM--A year ago today, Rusty Dillon called us late, around 2:00 AM or so, to tell us Ross had been injured in a senseless car accident while riding his bike. Doug and I stayed awake most of the night, unable to comprehend an injury so severe that Ross might not make it until morning. We called our son in Boston and woke him up. He and Melanie, now his fiancée, got a flight out the next day to be with their friend.
   I will never forget the phone call I made to Rusty the following morning. I asked how Ross was doing and he said, "My beautiful boy is badly broken." Those words will never leave my mind.
   When I got to the hospital later that day, there was a huge group of Ross's friends and family in the waiting room. They stayed there for days, a shifting, growing, ever-present source of support and love for Ross and his family. It was the first time I met Katie, his fiancée, a most amazing young woman. Her parents were there, Ross's sisters, so many friends, everyone in shock that someone as alive and vibrant as Ross could be hovering very precariously between life and death.
   I don't think anyone really expected him to survive at first, including his doctors. His injuries were terrible, but he is such a fighter and has such a tremendous spirit that even now, a year later, he is still struggling to come back. It's obvious he hasn't given up hope, which makes everyone who is near him hopeful.
   Today was much like many of the past days have been: his muscles were tense and tight but loosened up after therapy. His sister, Ariel, was there and said that after his nap, Ross was able to track her movements about the room with his eyes. His mom said his hands were relaxed for part of the day, which is a big step. So often he clenches them into fists. He was up in his wheelchair a couple of times and the wheelchair technician worked to get all the adjustments on his custom chair just right. Betsy said the insurance company, Aetna, has paid for the chair. Their coverage has also allowed Ross to stay at Kentfield, where everyone has helped tremendously to prepare the family to take him home.
   He's on schedule now to go home on Friday, but as I wrote in yesterday's update, much of that will depend on the CT scan he has Thursday afternoon. For now, please remember Ross, his family and his fiancée in your thoughts and prayers. To those of you who have followed his recovery, who write and pray for him and keep him in your thoughts, please know that you are so much a part of Ross's recovery and his family's well-being. Your support means more than you can possibly imagine, to everyone. Thank you.

June 2, 2003 8:00 PM--Ross had a better day today than yesterday. He was tense and tight this morning, but by later in the day was doing well. Betsy said he was very alert after his nap, tracked some with both eyes and watched the TV for about an hour, though they really have no idea how much he comprehends of what he sees.
   He is scheduled to go home on Friday, but that will depend on the CT scan he's having done Thursday. If the ventricles in his brain are the same size or larger, Betsy said they would not be comfortable taking him home. If they are smaller, then she said there isn't as much cause for worry, but they had enlarged prior to his seizures. If he hasn't improved, Betsy will be taking all of Ross's tests and medical history to another neurosurgeon for a second opinion.
   Tonight marks the end of a year since Ross was injured on June 3, 2002. I've spent the day thinking about him, wondering what Ross did that last night before everything changed. I've thought about his mom and dad, his sisters, and most especially Katie. It's been a long and often very sad year, but it's also been a year filled with hope, and even more important, overflowing with the most amazing love from so many people. Thank you, all of you, for your thoughts and prayers, and most of all, for being there for Ross and his loved ones through this very long recovery.

June 1, 2003 8:40 PM--Betsy said Ross slept most of the day and had a little more tone in his muscles, but when he was awake he was very alert. I imagine he was exhausted from his busy day yesterday and the two days before. There's not much else to report tonight, but I'll close with a thank you to everyone who has written to me over the past few days. Your kindness is just amazing and I so enjoy your notes. Please remember Ross in your thoughts and prayers.

May 31, 2003 8:10 PM--I just talked to Rusty. He spent the day with Ross and said the change in his condition is amazing. He looks good, his eyes are clear and he was tracking both side to side and up and down. He played the hacky-sack game until Rusty got tired and stayed awake most of the day. It appears that lowering the pressure in his shunt is making a definite difference.
   Rusty said he got Ross into his new wheelchair and then practiced getting him in and out of the van. Katie was there--her first visit in almost a week, but she's currently doing her ten week bar prep course, which means she's in classes six days a week until the end of July to prepare to take the bar in August. Until she completes the courses, she'll most likely only be able to come over to the hospital about one day a week.
   Rusty just called me back. He had talked to Katie. She said she gave Ross a foot massage after his bath and he was definitely watching her. When she touched his feet, he looked at them--an important point, according to the doctors, that he focus on the area being stimulated. Rusty said his focal point appears to be about five or six feet distance.
   It's always such a pleasure to report good news about Ross. Thank you, everyone, for your prayers and healing thoughts. You mean so very much to Ross's recovery.

May 30, 2003 9:20 PM--Talked to both Rusty and Betsy tonight. Ross had a really good day, considering how bad yesterday was. Rusty said he didn't act like someone who had three seizures yesterday, and Betsy said he was tracking really well, especially considering how debilitating seizures can be.
   He did amazingly well, spent time in his new wheelchair, his eyes were wide open and he was turning his head. I have to believe all your prayers and healing thoughts have helped. Thank you.

May 30, 2003 9:45 AM--I just called Betsy and she said Ross is doing okay this morning. They'll be at Kentfield for another week to see what's going on with the shunt, and whether or not changing the pressure has any affect on Ross's condition. I'll update later as I learn more. Please keep Ross in your prayers.

May 29, 2003 10:00 PM--I just talked to Betsy and she said Dr. Ramirez from Kentfield had seen Ross and said the CT scan showed one of the ventricles in his brain was enlarged. He reduced pressure with the shunt from 120 to 90 to see if that would help. They'll be sending Ross back to Kentfield later tonight. Betsy is staying with him, but it looks like he won't be going home tomorrow after all. I'll try and get another update in the morning. Thank you, everyone, for your thoughts and prayers.

May 29, 2003 7:40 PM--Rusty just called. Ross had three seizures today and is currently in the emergency room at Marin General Hospital, awaiting tests. Rusty said his vitals look good now, but at one point his blood pressure was up around 200/120. I will update later this evening as soon as we know something. Ross really needs your prayers tonight. Thank you.

May 28, 2003 10:00 PM--Betsy said there wasn't much to report tonight. Ross had a pretty good day, though he was a little more toney than yesterday. His pediatrician came by to see him. He's made regular visits to see Ross, though he's obviously well past the pediatrician stage, but today he noticed that Ross really watched him and followed his movements with his eyes. The physical therapist also noted how well he was holding his head up, as well as raising it on his own.
   Betsy said he has a cough that's most likely due to allergies. Coughing is a big challenge for him, but it's very important since he no longer has the trach.
   At this point it looks as if he'll go home on Friday. His custom wheelchair should be delivered to Kentfield by tomorrow, but Betsy said they'll be taking him home in an ambulance, since it's such a long trip.
   Thank you so much for keeping Ross in your thoughts and prayers. This is a pretty eventful time for him, to actually be so close to going home.

May 27, 2003 9:40 PM--Betsy said Ross was doing well today and tracking much better. The physical therapist was impressed with how relaxed his muscles were. However, Betsy said the hospital informed them today that Ross needs to go home by Thursday-they have been told by Kentfield that the insurance company will probably refuse to authorize a stay beyond Thursday or Friday because they figure they can get second opinions on an out-patient basis. Also, the doctors they want to see for second opinions don't have staff privileges at Kentfield--thus Ross can't be seen by them at Kentfield. They definitely want second opinions as to the shunt functioning and what is revealed by the CT scans.
   Betsy said they've got the names of a couple of doctors for second opinions of Ross's condition. Hopefully, they'll get enough answers to their questions before taking him home.
   Betsy said their biggest complaint is that they just want someone to sit down with them and tell them what's going on. So far, that hasn't happened. She sounded frustrated and exhausted tonight, and I can't blame her.
   Please keep Ross and his loved ones in your thoughts and prayers. Your continuing support is more important than ever.

May 26, 2003 9:15 PM--Today went well. Ross was much more relaxed than he's been. Betsy said he often holds his left leg out really straight and so tight she can't bend it, but today it was partially bent and relaxed looking. His eyes looked wide and bright and he held his head up a number of times while in the wheelchair.
   They're still trying to find both a neurologist and a neurosurgeon for a second opinion. Betsy said they're getting some good leads on who to talk with. They're also getting things set up at home for Ross. He'll need a lift to move him from the bed to his wheelchair (which they have) and Betsy said they're looking for a special chair that can be used to get him in and out of the shower, which is essentially a narrow wheelchair with larger wheels in the rear and smaller ones in the front that they can wheel directly into the shower.
   They've spent most of the money from the Hope Fund on the wheelchair-accessible van and insurance is picking up some of the other items, but there is so much they're going to need in order to take Ross home and be able to care for him. I've been looking through my own catalogs (I have multiple sclerosis so I get the MS society newsletter and ads) and it's unreal how much this stuff costs.
   Thank you so much for your thoughts and prayers for Ross and his family. Once they get a second opinion on the condition of his shunt, Ross's parents will be taking him home. It's been a very long year, and sometimes I can't believe how much time has passed. Ross was injured on June 3, 2002. So much has happened in this past year, but uppermost in my mind is the fact that Ross is alive, he is slowly but surely improving, and he has so many of you to thank for your continuing prayers, your support and your love. Thank you.

May 25, 2003 9:15 PM--Betsy spent the day with Ross so that Rusty could take some time to get a few things done at home. It's difficult to imagine how they continue to make their lives work while spending as much time as possible with Ross at the rehab center, but Betsy said today was a pretty good day. Ross was tracking a little tonight, the first time since Friday, May 16 when he started the Baclofen. On that day he was able to track and cross the visual midline while standing with the tilt table. Much of the time since he got to Kentfield, Betsy said they've been wondering what happened to his ability to track. In retrospect, they think it is usually related to medication that has a side effect of sedation. Ross has been off the Baclofen now for about 48 hours, he's less toney and he appears more alert.
   They're coming up with a list of doctors to check with for a second opinion on Ross's condition. Their big concern, of course, is the shunt and whether or not it is working properly. That has got to be settled before they take him home.
   To all of you who follow Ross's recovery and who send your prayers and good thoughts on such a regular basis, a huge thank you. Your support is so important to everyone.

May 24, 2003 10:00 PM--Ross was really sleepy today, but his parents were pretty busy. They bought a van that's wheelchair accessible for Ross. It's a used Dodge Caravan (bright red!) that has been lowered and uses a ramp for access. Rusty is still trying to figure out how to secure the wheelchair inside, but they're very pleased with it. It's used and cost $22,000, but the money from the Hope Fund paid for it. The fund, of course, is now seriously depleted, but they really had to get the van in order to take Ross home once the problems with the shunt are cleared up.
   Betsy said she talked with a specialist who said that when they are looking for doctors for a second opinion on Ross's condition, they need to find someone experienced in seeing patients recover. So often, patients who have been injured as seriously as Ross never get better. However, he is showing constant improvement,so much so that his doctors are all suprised by his recovery to this point. So often, they see very few people survive such traumatic injuries, much less improve. Ross is beating the odds so far, and there's no reason for him not to continue, but it will be important to find both a neurologist and a neurosurgeon able to see his potential for healing so that they're better able to work with him.
  He's been off the Baclofen for about 24 hours now, and Betsy said the difference was obvious. He looks much better, his eyes are brighter and he's more alert--when he's awake!
  The nurse who is with Ross tonight is a nationally ranked runner and also a cyclist who just completed the Davis Double as well as the Wildflower. Rusty said it's really special to have people caring for Ross who understand the kind of spirit and determination he has.
   Thank you, everyone, for your continuing support, for your healing thoughts and prayers for Ross and his loved ones.

May 23, 2003 8:30 PM--Rusty spent the day with Ross and said he was less toney today, even though they stopped the Baclofen. Betsy said they are looking for a doctor to give them a second opinion on the condition of Ross's shunt, to see if the pressure in the ventricles could be suppressing his mind.
   Tomorrow they're picking up the wheelchair van they've decided to purchase. It belonged to an ex-Kentfield patient who has progressed beyond a wheelchair. They will be able to pay for part of it with the money in the fund, but as Betsy said, at this point, they're robbing Peter to pay Paul. I get the feeling Betsy is really anxious to get Ross home where they can care for him.
   Thank you so much for your continuing good thoughts and prayers. They mean more than you can possibly know. Please hold the good thought for Katie, who is graduating from Boston School of Law this weekend.

May 22, 2003 9:40 PM--When I talked to Betsy she said Ross was pretty toney tonight. He wasn't very responsive, either, and not tracking as well. She managed to get hold of Dr. Ramirez, who maintains the shunt is working fine, but Betsy said there'd been some question as to a change in size in the ventricles in Ross's brain over the past few weeks, as well as the fact he was doing so much better just a short time ago. They will be asking for a second opinion before taking him home. At this point, there are too many unanswered questions.
  Days like this can be so frustrating, especially when Ross has had days that are so much better. Times like this, your healing thoughts and prayers for Ross mean so much. Thank you, all of you, for continuing to follow Ross's long recovery.

May 21, 2003 7:30 PM--This morning there was a discrepancy in the measurements of Ross's legs, a sign of potential blood clot, so he was taken to the hospital for a sonogram. It did not show any problems. However, the CT scan results finally came in and they showed no change in ventricular pressure, which means the shunt might be malfunctioning, since pressure should have been reduced.
   Until the shunt is working correctly, Betsy said they can't even consider taking him home. In the meantime, he was less toney today but still fairly alert, which means he might be adjusting to the Baclofen.
   Thank you so much for your thoughts and prayers, and your continuing support. When I spoke with Betsy, she was on her way to Murphy's Pub for their special Trivia Night, a fundraiser for Ross. If any of you attend, please drop me a note and let me know how the evening goes, okay? Write to [email protected].

May 20, 2003 8:30 PM--Betsy said they still haven't gotten the results they were expecting on the CT and xray, which is really frustrating. At least there was some good news--the insurance company has agreed to the special air bed that Ross needs at home. Betsy said the therapist was really surprised they were going for it...personally I think there's a whole lot of credit that should be paid to the folks who follow Ross through the website...
   Rusty said they may have found a van for Ross, one that belonged to another Kentfield patient who no longer needs the wheelchair accessible van. It's going to cost about $25,000, so if you've thought about making a donation to the Dillon fund but haven't done so, this would be a really good time to consider it. If that's not an option, please remember to keep Ross in your prayers, because that has been a powerful force in his recovery.
   Tomorrow night is the trivia night at Murphy's Irish Pub in Kentfield. If you live close by and can make it, please try and be there. Information is in the box at the top of the page.
    Thank you so much for your thoughts and prayers, and for your steadfast kindness.

May 19, 2003 9:00 PM--Just talked to Betsy. She's spending the night with Ross to take care of meds and turning and all the things that need to be done for him during a 24 hour period to prove she's capable of handling his care before he gets sent home.
   She said he was awake and alert tonight, though sleepy earlier in the day. He was able to track some with the speech therapist, though the Baclofen appears to make him less alert. Betsy said she's not really sure it's worth it because it inhibits him so much.
   Please keep Ross and his loved ones in your thoughts and prayers. Thank you so much, all of you, who have stayed in touch through the website and guestbook, and continue to follow Ross's recovery.

May 18, 2003 9:30 PM--Betsy said Ross was sleepy today, and his muscles were somewhat toney, but she was able to work out the stiffness with range of motion exercises. He also managed to get his left ankle straightened out while on the tilt table, something he's had trouble with in the past.
   Katie spent a lot of time today with Ross as she's leaving tomorrow for Boston and graduation from law school. She's managed to complete her courses through an extension program as a visiting student at Boalt Hall at Berkeley, a very prestigious law school, this last year. She will graduate with her class from Boston College Law School where she is also an editor for the Law Review. Katie is truly an amazing young woman.
   Betsy will be staying overnight again tomorrow. She said the staff at Kentfield wants to make sure she realizes what all is involved with Ross's care for a 24 hour period--as if she hasn't figured that out in the past year. She and Rusty are still waiting on the results of the current CT scan and x rays. They can't even think of taking Ross home until they know for sure that the shunt is working.
   Thank you for your support, for your thoughts and prayers for Ross, Katie and their families.

May 17, 2003 8:10 PM--I just talked to Betsy and she said Ross had a pretty good day today. She expected him to be tired because he is back on the Baclofen to reduce muscle tone, but he was actually quite alert and tracking really well. He also did well in the wheelchair and was lifting his head and looking around.
   Betsy said she did a lot of range of motion exercises with him today, especially concentrating on his hands. She's been soaking his fingers in Epsom salts and using peroxide afterwards, and the infections around his fingernails appear to be clearing up.
   Ross is scheduled to come home next Friday (May 23) but they'll need to have the problems with the shunt settled before he can be discharged. A good bit of news is that Dr. Doherty wants to see Ross in her monthly clinic once he's released, which means he will receive regular exams and evaluations from therapists.
  The Dillons are going to need a wheelchair accessible van, so if you have considered donating to the fund for Ross but haven't done so, please consider it. Even the used ones are not cheap, and no, I didn't ask their permission to put this in the nightly update, but I know it's something that is worrying them.
   Please remember Ross and his loved ones in your thoughts and prayers, and thank you so much for your continuing support.

May 16, 2003 8:20 PM--Ross had a pretty good day today, though his muscles were really toney. Dr. Doherty plans to put him back on the baclofen for awhile to relax his muscles so he can get more out of his therapy. At this point, the tone is really distracting and affects his response to therapy.
  Betsy said he was very uncomfortable during his early therapy session, including the time he was in his wheelchair, but this afternoon was really great. He did well in the tilt table, was tracking and following some commands. Also, the achilles tendon in his left leg, which has appeared to be much shortened, relaxed enough that he was able to hold his foot in a normal position. Betsy said the therapists are beginning to show a lot more interest in Ross as they get to know him better and see what he is capable of.
   There are no results yet on the CT scan or the xrays. Betsy said she's concerned there is something not quite right with the shunt, as it is supposedly adjusted properly, but the pressure in Ross's ventricles of his brain have not gone down yet.
   Things are going better with the bed situation. Insurance companies appear not to be immune to the squeaky wheel tactic, but it's still very frustrating.
   Please keep Ross in your thoughts and prayers as we approach the one year anniversary of his accident. I still find it unbelievable that an entire year will have passed in just two more weeks.

May 15, 2003 9:35 PM--Talked to Rusty tonight. Ross had a good day, though he did have some stomach upset. The doctor figured it was from trying to compress his feeding into fewer, high volume periods (he's still fed through a tube into his stomach) and instead has returned him to a more continuous feeding.
   He's sleepy but alert and appears to be responding to requests. Rusty said he's going to have more CT scans to determine whether or not the shunt is working properly.
   In the meantime, Rusty and Betsy are fighting with the insurance company. Rusty said they regularly deny payments and hassle over every charge. The wrong type of bed was delivered to the house, but Rusty said the insurance rep told him they won't upgrade to the proper type until Ross has severe bed sores showing a need for a pressure sensitive bed. It appears they will not respond until a problem actually exists.
   Please keep Ross, his family and his fiancée in your prayers. This is a truly difficult time for them, especially when Ross is once again beginning to show improvement, and there are still so many hurdles.

May 14, 2003 8:35 PM--Ross had a good day today. The speech therapist has commented on his improvement, though also notes that the tone in Ross's muscles is distracting him.
  He was up in a wheelchair for over three hours while being moved to a different room, but Betsy said he did really well. He was quite tired by the time he finally got back into his bed.
   He's tracking well and is essentially back to "baseline," where he was when he was moved from Herrick. He also is doing quite well in the standing frame. The next big step is for him to start following directions. Betsy said he was doing that at Herrick, but never when the therapists were close by and could note it. He's going for another CT scan tomorrow. His current discharge date is set for May 23, a week from Friday.
   Thank you for keeping Ross in your thoughts and prayers. It's so good to see him once again showing obvious signs of improvement.

May 13, 2003 9:00 PM--I apologize for not having an update yesterday, but my computer refused to boot up. After numerous attempts, I finally took it to Pro-Tech Computer in Windsor and the owner was able to retrieve my damaged and missing files, including Ross's website, as well as make the necessary repairs.
   Ross had a really good day yesterday. He was wide awake for the speech therapist and doing better than he has in ages.
   Today, he was tonier, and though he was still very alert, the speech therapist said the tone in his muscles is distracting him. He is, however, very alert and by late in the day his muscles appeared to be more relaxed. Betsy was able to get Ross into his wheelchair today with some help from an aide and the use of a specially designed lift. She said he did really well in the chair, holding his head up and watching everything around him.
   Thank you so much for your thoughts and prayers. You're needed more than ever. Betsy said it's going to take a miracle for Ross to show enough improvement to be able to stay at Kentfield where he can continue to get the therapy he needs.

May 11, 2003 8:30 PM--Just got off the phone with Betsy. Today was much better. Ross was more comfortable, not as toney. He did some tracking, even got a massage which must have felt really good. It looks like he'll be at Kentfield another 10-14 days at least, as it will take that long to get the problems with his shunt resolved.
   Thank you again for your continuing support, your prayers and good thoughts for Ross and his family and loved ones. You really do make a difference.

May 10, 2003 9:50 PM--Today's been a tough one. Ross has been really uncomfortable most of the day and Betsy said they're not sure why. When I called, I could hear him moaning in the background. It's so difficult, I imagine, for his parents and his fiancée. It's really hard for those of us who knew him as he was before this terrible accident, who remember the guy with the sharp wit, the drop-dead grin, the quick retort. On days like this you want to wish the past year away and see him back with his wisecracks and joy. Thank you, all of you, who read his reports and keep Ross in your thoughts and prayers. I keep thinking that one of these days he's just going to wake up from this horrible nightmare and come back the way he was. I have to believe that can happen, but even if it doesn't, even if it's a long, slow recovery, I still believe he's coming back...and it will be because so many people would not let him slip away. You can't possibly imagine how important you are to all of us. Thank you.

May 9, 2003 8:00 PM--Rusty spent the day with Ross. He said he wasn't tracking at all, which is normal after a seizure. The trip for the x-ray and CT scan turned into a marathon three hour deal when it turned out the CT scanner at Marin General was broken. They were able to get the test done, but had to go to a different facility. Rusty hand-carried the x-rays and scan back to the doctor in the hopes of getting the results read faster.
   They did have Ross up in his wheelchair during the day, and Rusty said he looks good and is moving his arms a lot. We're all curious as to the results of the tests, which should show the condition of the ventricles in his brain as well as the settings for the shunt.
   Katie is busy working on her take-home final for law school. She'll be flying to Boston later in the month for graduation with her class at Boston University School of Law. She is an absolutely amazing young woman.
   Thank you for your continuing support for Ross, for your thoughts and prayers and your kindness.

May 8, 2003 8:30 PM--In Betsy's words, "Things keep getting stranger and stranger." Dr. Ramirez came in about one today and said Ross's shunt was back up to 160. It had actually been adjusted to 120 a couple days ago. Ross is going in for more x-rays tomorrow, and there is a concern the shunt might be malfunctioning.
   Betsy said Ross did well in the standing frame and the speech therapist also felt he was connecting during therapy. The pulmonologist removed the bandage from Ross's trach opening, and it's almost completely healed. Betsy said she is so glad to be back in Marin, and gratified that Dr. Ramirez is handling Ross's case.
   We ended our call when Betsy's cell phone rang. I was working on this page when she called me back to say the call was from Kentfield. Ross had a seizure tonight, possibly a result of the shunt adjustment. They'll do another CT scan on him tomorrow, along with the x-ray.
   Please pray for Ross, for his family, and for the doctors who are treating him. This has been a really tough period, to be so hopeful and yet to have so many roadblocks along the way to recovery. Thank you so much for your continuing prayers and support.

May 7, 2003 7:45 PM--I talked to Rusty tonight. He said Ross has been pretty zonked out on the Baclofen, so the doctor has discontinued its use. She's afraid it might be masking other problems, including hydrocephalus which can cause both suppression of tracking and toniness. Ross had an x-ray of the shunt today and another CT Scan is scheduled next week. The hospital has asked for more time to work out the shunt problem, but the insurance company has not yet had time to respond. The neurosurgeon is concerned because the shunt is not callibrating properly. The settings are either changing, or not setting correctly when he adjusts them.
   Ross did appear to be more alert today, but he is obviously not as alert or tracking as well as he was before the move to Kentfield. Rusty said he's approved for another week at Kentfield, though they're hoping for ten days, as they certainly don't want to take him home until everything is sorted out.
   Please keep Ross and his family and fiancée in your thoughts and prayers. This is such a frustrating time for all of them, but Rusty told me today how important your support has been to them over the months. Thank you so much for caring.

May 6, 2003 8:30 PM--It looks as if Ross has an extension to remain at Kentfield until at least Friday, but Betsy said they really don't want to take him home until the mystery of the shunt is settled. When the doctor adjusted it today, he reduced the pressure from a setting of 150 to 120. When he adjusted it last week, he set it at 140, and no one can explain why the setting was higher this week. Since the adjustment is done magnetically to avoid surgery, Betsy said they're trying to figure out if something in the room is affecting it.
   In the meantime, Ross was very sleepy today, though quite relaxed, most likely a result of the increased dosage of Baclofen. He is officially without a trach. The doctor checked the plug in his throat and discovered that it had been moved out of position, which allowed the opening to begin healing shut. Betsy said it's almost completely healed over.
   Ross will be having more tests tomorrow. Thank you so much for your continuing prayers and support.

May 5, 2003 9:30 PM--We're still not certain if Ross will be going home on Wednesday or not. Betsy said there were two reports on the doctor's desk this morning regarding Ross's shunt--one said everything was fine and the other said their might be a problem and he was showing signs of hydrocephalus, which might indicate the shunt was blocked or otherwise not functioning properly.
   He was taken back to Marin General for another CT scan. Should have results tomorrow, but if there is a problem, it would explain his slower responses this past week.
   Ross has also been started back on Baclofen to help with the tautness of his muscles, but it has a sedative effect, so he was pretty sleepy today. Hopefully we'll have better news tomorrow, but Betsy said they're really praying he doesn't have to have the shunt replaced, which would require more surgery and chance of infection.
   Please remember Ross in your thoughts and prayers.

May 4, 2003 8:20 PM--I just got home this evening and talked to Betsy. She said Ross has been really "toney," which means his muscles are very tense and tight. Also, he's not tracking as well as he was last week, though physically, he looks good. She said when he's resting, he appears relaxed, but he tends to tighten up when he's awake.
   The rental wheelchair they got for him isn't working. It appears to make him really uncomfortable, but the specialized one he was measured for over a month ago wasn't approved by the insurance company until this past week, so it's just been ordered. The results of his CT scan are back, but they haven't been compared to the one taken two weeks ago, so there's no way to tell if his condition is changing or not.
   At this point, Ross is scheduled for discharge from Kentfield on Wednesday.
   You are more than welcome to read between the lines if you want my personal opinion of our medical system at this point in time. Thank you, everyone, for your continued support for Ross, for your thoughts and healing prayers. Believe me when I say you make a tremendous difference.

May 1, 2003 9:20 PM--Just talked to Betsy. It was a long day today, starting with Ross's trip to Marin General this morning for the CT Scan. Betsy has no idea what the scan showed, but hopefully it won't take as long to get the results this time.
   The hand doctor finally came by today. She said it appears that when Ross clenches his hand into a fist, he does it so tightly that he is pulling the nail away from the nail bed. It looks like an ingrown nail, but isn't. One finger is still infected, though the other appears to be healing.
   Betsy spent the night at the hospital and said when she awoke at midnight, she checked his monitors and Ross's pulse was way up. It was obvious he was very uncomfortable. He is supposed to be moved every two hours and hadn't been for over four. The nurse came in immediately and got his position shifted, and he was moved on schedule the rest of the night.
   Ross is still scheduled to go home on May 7, though he is very close to meeting the criteria for continued therapy at Kentfield. In the meantime, his parents are getting his room ready in preparation for his homecoming. Obviously it's not the one they've been hoping and praying for, but we all believe Ross will show more improvement out of the hospital environment. It's going to be a huge commitment to continue his care and therapy at home, but the fact he is showing improvement is a mighty incentive.
   I will be away until Sunday, so the page won't be updated for the next two nights. Please call 707.799.8868 for Rusty's nightly reports. Saturday will mark the 11th month since Ross was hurt. Considering the horrible extent of his injuries, he has come a long, long way, though he still has far to go. Please keep him in your thoughts and prayers, and remember his parents and fiancée as well. Thank you so much for your continuing support.

April 30, 2003 8:15 PM--Betsy is staying overnight at Kentfield so she can be there in the morning when Ross goes to the hospital for his CT scan. She said she's also interested to see how he does at night, how much sleep he gets and the kind of care he receives.
   I get the feeling this was a rough day. Betsy said Ross was fine, but she also admitted it's sad, to see Ross so hurt after so much time. It's so difficult not to see more improvement, but at the same time, amazing how far he has come since he was first injured.
   He was sleepy this morning but did well in the standing frame. Betsy said he wasn't grimacing as he has in the past. The meal schedule he's on is interfering with his therapy schedule as it takes a longer period of time to feed him and then keep him upright long enough to digest.
   He is doing really well without the trach. His oxygen saturation levels are great and all his vital signs look good, though his muscles were tighter today.
   I asked Betsy if he moves at all on his own. She said when he sleeps he draws his knees up and sort of tucks himself into a ball, but still can't move his torso on his own.
   I'll update tomorrow night, but then have to attend a conference in Sacramento for the weekend. I'll be back in time to call for a report on Sunday. Thank you so much for keeping Ross in your thoughts and prayers, and thanks too, for the wonderful notes you've sent. They mean so much to all of us.

April 29, 2003 8:30 PM--Betsy sounded really upbeat when I spoke with her tonight. Ross continues to do well. He is almost back to the level he had reached before leaving Herrick and the speech therapist is very pleased with his improvements since having the shunt adjusted. He has an appointment this week to go to the hospital for a follow-up CT scan to check the adjustment on the shunt.
   Today though, he did really well in the standing frame and also spent a lot of time upright in the wheelchair. Betsy said he was sitting very straight and looked great. He spent over three hours in it this morning and another two or so this afternoon. He needs to remain upright when he is receiving his food, which is still given through a tube into his stomach, then he has to remain upright for a half hour after. Betsy said he gets 2900 calories a day and has actually put on a couple of pounds.
   In the meantime, Betsy is getting more training on working with Ross. Today she moved him from the bed to the wheelchair with just a bit of help. It really is a two person job, but she's handling most of it on her own with a "spotter."
   I asked how he was doing with his tracking, and she said he is showing daily improvement. The therapists look first at tracking ability and then the ability to follow commands. Ross still has a long way to go, but at least he's once again showing improvement.
   The hand doctor still has not been by to check the infection on his fingers. It's been over three weeks. Betsy has been soaking his hands and the nurses have given her some antibiotic cream to use on the bad areas, but it's been very frustrating to know he has a problem that needs to be treated and they can't get anyone to take a look at it. She said the infection has cleared up somewhat, but not completely.
   Please keep Ross, his family and his fiancée, Katie in your thoughts and prayers.

April 28, 2003 7:30 PM--We're just home from Boston this evening and I'm posting a note I received from Betsy on the 26th. It was so frustrating to hear from her and not be able to do anything on the website. Ross is still at Kentfield. Betsy wrote:
   Good news! Ross is not coming home tomorrow. He is scheduled to come home next weekend. The extension was to give the neurosurgeon time to read the new CT scan that was done on Wednesday and to adjust the shunt.
    If he didn't read it, we wanted time to get a second opinion. Ross was, by the way, much more alert on Wednesday, and jumped when the xray tech dropped a film into it's case next to his ear.
   The neurosurgeon came in on Wednesday night and adjusted the shunt. Ross is now doing better than in the last three weeks.The speech therapist is even commenting about it. We are praying that he continues to progress and he might be able to stay at Kentfield. It is good to know that home is a viable alternative.
   When I talked to Betsy tonight, she said Ross has an extension to stay at Kentfield until May 7. He continues to improve. Even when he is tired and sleeping, he can be easily awakened and is alert. Right now, though, the therapist wants to see more consistency in his tracking. He is still unable to regularly track with his eyes for periods in excess of fifteen seconds, though he has tracked for longer periods on occasion.
   Kentfield is still the best place for him, as he can receive regular therapy from qualified specialists, but Betsy feels much more confident about bringing him home, should that become their only alternative.
   Thank you again for your continuing prayers for Ross and his family.

April 22, 2003 8:40 PM--Betsy said Ross was a bit more alert today, though he's still not tracking as well as he was. However, he is doing well, his temperature remains normal, his oxygen saturation levels are excellent and he's been able to cough in order to clear his throat when he needs to.
   Betsy and Rusty are all ready to bring him home on Sunday. My next update will be Monday night, after I get home from Boston. If you want to know how Ross is doing, please call 707.799.8868. His dad updates the message nightly, and it's usually much more detailed than what I put on the website.
   Please keep Ross and Katie and their families in your thoughts and prayers. I'll be back Monday night with a full report.

April 21, 2003 8:15 PM--I just talked to Betsy and she said Ross had a pretty good day, though he slept through most of it. He's doing well without the trach, his oxygen saturation levels are great and his pulse and temp are normal. He's just sleeping a lot. She said she wonders if the shunt needs adjusting. He had xrays this morning of both the shunt and the area where his neck was broken and then stabilized, but Betsy hasn't seen any results yet. In the meantime, they're getting the house ready to take him home. At this point, barring any schedule changes, he should be coming home on Sunday. I'll be in Boston over the weekend, so you'll need to call 707.799.8868 for updates after Wednesday.
   Please keep Ross in your thoughts and prayers. Going home is going to be really wonderful, and at the same time, very difficult for his family and loved ones.

April 20, 2003 8:10 PM--Just a brief update tonight to let you know that Ross had a good day. He slept quite a bit, but Betsy noticed that his right arm (the one that had the serious elbow injury and won't extend fully) was quite relaxed and extended almost to the maximum his injury allows. His temperature and pulse were fine and he is still doing really well without the trach. Tomorrow he's got a full slate of therapy, so Betsy is hoping he has another good night's sleep.
   Thank you so much for keeping Ross in your thought's and prayers.

April 19, 2003 8:00 PM--Just talked to Betsy and she said Ross got a good night's sleep last night (seven hours) and his oxygen saturation rate is still excellent, so he's doing great without the trach. He appears more relaxed and his muscles are showing a lot less tone.
   The chaplain at the hospital held an Easter service today and Betsy said they took Ross to it, then spent some time outside. His meals have been broken up into four separate feedings where he has to sit upright at a 90° angle during the feeding and for an hour after--he's handling that fine, though he often falls asleep. Betsy said he's still not tracking the way he was a couple weeks ago, and they're not sure why. The doctor doesn't seem to think it's hydrocephalus, though he intends to do an x-ray to see if the shunt needs to be adjusted. The infections on his hand are clearing up, and overall, Betsy said Ross just seems much more comfortable without the trach.
   Unless he shows major improvement, to the point where Kentfield physicians believe they can offer him more help through rehab, Ross will be going home a week from tomorrow, on April 27. Betsy said she is definitely ready to get him home, especially now that he is able to go without the trach.
   Wishing all of you the best during this season of hope and renewal. Please remember Ross and his fiancée, Katie, and their families in your thoughts and prayers.

April 18, 2003 10:10 PM--Ross is still off the trach and doing fine. Katie stayed with him until late evening and said he was doing well, though he is obviously not as alert as he was a couple weeks ago. The neurosurgeon has ordered a new CT scan on Tuesday, and may do further tests as well to determine if there is a problem with hydrocephalus.
   In the meantime, the doctor has increased his medication to help him sleep nights. Please keep him in your thoughts and prayers. We're all ecstatic, seeing him doing so well without the trach.

April 18, 2003 9:50 AM--Just a brief update to let you know that, while Ross didn't sleep all that well last night, he did just fine without the trach and his oxygen saturation levels were good and high this morning. His pulse was up a little bit when Betsy arrived, but he was alert and seemed to be breathing just fine. Thank you all so much for your prayers and your wonderful notes. I'll update more later tonight.

April 17, 2003 9:00 PM--When Betsy left the hospital at 4:30, Ross was still doing great. His oxygen saturation levels had actually gone up some and he looked a lot more comfortable. I just talked to Betsy and she said Rusty was at the hospital this evening with Ross.
   When I asked her if the CT scan had ever been read, she said it hadn't. She also said that when the test was done over two weeks ago at Marin General, the radiologist said it appeared Ross had some mild hydrocephalus, but of course his opinion isn't official. In the meantime, the doctor at Kentfield has adjusted some of his medications to help him sleep better at night and has agreed to increase the amount of water he's getting. Betsy said they're also going to switch from a continuous feeding to four separate meals a day. It will be more of a challenge for him and he'll have to sit upright, but it's another big step.
   I think Betsy and Rusty are really ready to take him home where he can be part of the family again. In the meantime, getting off the trach will be a huge step forward. Nights are usually the toughest time, so please keep Ross in your thoughts and prayers, especially tonight.

April 17, 2003 2:30 PM--The doctor came in to change Ross's trach today and realized he would be unable to replace it without taking Ross to Marin General and putting him under anesthetic. He decided to try removing the trach altogether, blocking the opening in Ross's throat, and letting Ross breath on his own.
   Ross has been doing beautifully since 11:00 this morning. He's not as toney or uncomfortable as he's been, and his oxygen saturation levels are great. Please say an extra prayer for him today, that he is able to continue without the trach. If he shows any distress, he will be going to Marin General for a new trach, but Betsy said they're hoping and praying he can do well without it.

April 16, 2003 9:20 PM--Betsy said Ross still had a high pulse today and appeared really uncomfortable. The doctor suggested turning him, and that helped some, but he is definitely more "toney" than he's been. Betsy said she thinks it has to do with not being on the valproic acid, but they've decided not to restart that as he is already taking another anticonvulsant, and his tests show absolutely no sign of seizures. Plus, Kentfield does not allow acupuncture, something that appeared to help him quite a bit in the past.
   The doctor still has not checked his CT scan for signs of hydrocephalus, which is really frustrating.
   Betsy suctioned Ross by herself for the first time today, and the doctor said she did fine. There are a number of things she and Rusty will need to learn in order to take him home. He gets his trach changed tomorrow, to one that should be more comfortable for him.
   Please keep Ross in your thoughts and prayers. The road to recovery is long and hard.

April 15, 2003 8:30 PM--Betsy stayed the night in Ross's room and said his pulse was way up and they couldn't get it down. His oxygen saturation rate was very low and he was dealing with lots of secretions he couldn't cough up. The pulmonologist suctioned his trach and that helped somewhat. Betsy is concerned with the type of trach being used, as it appears to promote more secretion, which interferes with his breathing.
   The EEG was finally read, two weeks after the test was administered, and shows no sign of seizures. However, the test was done before doctors realized Ross had been removed from Depakote (valproic acid) "cold turkey" after leaving Herrick, something that is strongly recommended NOT be done. He still hasn't been put back on it.
   Betsy stayed until Katie arrived in the afternoon. She said Ross was really "toney" (tense) much of the time, though he did relax his muscles during sleep. All in all, it's been a pretty tough week, and it's only Tuesday. Please keep Ross, Katie and their families in your thoughts and prayers.

April 14, 2003 8:10 PM--Betsy is spending the night at Kentfield with Ross tonight. She said he's definitely in distress. His pulse was at 130, he was sweating and obviously uncomfortable. He had some Tylenol and slept most of the day, but he's got another painful infection going on his finger which appears to be really bothering him.
   They also discovered another medication had been left off the transfer instructions, one for convulsions which also had a sedating effect, so possibly he is more aware of his situation and that might account for some of his distress.
   However, his EEG and CT scans still have not been read, even though the doctors promised to have them done by today. Betsy sounds frustrated beyond belief. It's been two weeks since the tests were done. He has been approved for two more weeks of care, but I get the feeling they would rather have him home where he can receive a decent diet and be monitored more closely for infections and other problems.
   Please keep Ross, Katie and their families in your thoughts and prayers. This looks to be a most difficult week.

April 13, 2003 8:30 PM--Betsy and Rusty didn't go into Kentfield today. They stayed home to paint and otherwise prepare Ross's room for when he comes home to stay. Katie was with him all day, and he had visitors throughout the day. Katie told Betsy his heart rate was up and she requested he be given Tylenol a couple of times because he appeared to be experiencing pain.
  She also said that when she was reading to Ross, he was watching both her and the book, and he seemed to pay attention to the visitors he had. Hopefully, when the neurosurgeon returns from his vacation tomorrow, he'll be able to check Ross's test results and see if there is any blockage in his shunt. Betsy said they are concerned he is dealing with hydrocephalus once again, which would account for his lack of response in various situations.
   Please keep Ross, Katie, and their families in your thoughts and prayers. They are really hoping he can stay at Kentfield just a little bit longer, at least until he can go without the trach.

April 12, 2003 10:00 PM--We were out until late, so Betsy emailed the update:
   Ross had an OK day. He was up in the standing frame for about 15 minutes, and he had a hard time holding his head up. He seemed tired today. We are still waiting for a report on the EEG he had two weeks ago and for the neurosurgeon to look at the CT scan.
   Rusty started his training for taking care of Ross at home today. We still want more time at Kentfield, but are preparing for home where we tailor his care and therapy to him and his needs. We also want to say how pleased we are with Ross's nurses. They are very skilled and compassionate.
   Please remember Ross in your thoughts and prayers.

April 11, 2003 8:10 PM--Ross was sleepy today. Betsy said they still wonder if he's having some recurrence of the hydrocephalus, but won't find out until the neurosurgeon is back from his vacation and reads the tests. If that's the case, an adjustment in the shunt might make a huge difference in his ability to respond. In the meantime, Betsy and Rusty are preparing to bring Ross home in case the insurance refuses to cover any more of his stay at Kentfield.
   Doorways in the house are fine for his wheelchair, and the ramp they bought will work perfectly in both the garage and the front door. Their family doctor has agreed to take Ross on as a patient, and both Betsy and Rusty are learning the various therapy techniques they'll need in order to do Ross's range of motion exercises to keep him limber, his physical, occupational and speech therapy, how to turn him, how to provide food and medications through his feeding tube and all the various things complete home care requires.
   It's a huge commitment, but they have no choice if the insurance company decides Ross isn't benefitting from rehab. Betsy said their one major hope now is to get him off the trach before they take him home. Hopefully, they'll get approval for another two weeks, and with any luck, be able to get him off of it during that time.
   Ross, his fiancée and his family need your prayers now more than ever. Please keep them all in your thoughts.

April 10, 2003 8:45 PM--Betsy said it looks like Kentfield will approve Ross for two more weeks, and she's assuming the insurance company will follow suit. This will give him more time to show improvement, now that his meds are all working properly. Betsy said he did well today, though it's frustrating working with the speech therapist who insists on certain movements and actions he's not yet able to do. He can track and turn his eyes from side to side, but she wants him to look up on command. That's something he can't do yet.
   At least this next two weeks gives them time to work toward specific goals. Betsy is hoping they'll be able to get him off the trach. They're asking for a second opinion from a pulmonologist, and at least they're working toward specific goals.
   Please remember Ross in your thoughts and prayers. He needs all of you so much right now.

April 9, 2003 9:50 PM--Today was the ultimate in frustration. Betsy said the powers that be at Kentfield have decided Ross is not benefitting from their program. They have suggested he remain until the 18th--the insurance company is saying they will pay for care until the 13th. In the meantime, Ross's EEG has not been read by a neurologist and the neurosurgeon has not seen his CT scan. For all they know, some of his problems could be caused by hidden seizures or hydrocephalus, both conditions that need to be medically treated.
    Another frustrating element is the fact it has taken the past two weeks for Kentfield to finally get his medications right after his transfer from Herrick. Betsy said it appears the Bromocriptine has finally begun to kick in, evidenced in his better responses and alert behavior.
   Today was one of Ross's best days since he was last at Kentfield, before his second brain surgery. He was alert and responding well, but none of that was taken into consideration by the committee that met this morning to determine whether or not he could stay in rehab.
   There is nothing available in this area for a person in Ross's situation. Betsy said he needs good "sub acute" rehab, but the only place he will most likely be able to receive it is at home. The concern is, he still has a trach, he is fed through a tube into his stomach, and requires full, 24 hour per day care for his every need, as well as the importance of trained therapists working with him on a regular basis to bring him through this.
   Please keep Ross in your thoughts and prayers. We probably can't fix a medical system that is without a heart and soul, but there is a lot of hope for one very tough young man trying his best to recover from a horrible injury.

April 8, 2003 9:00 PM--Today went pretty well. Ross slept through the night after taking a mild sedative, then got coffee for the first time since his accident when he woke up this morning. Betsy said he stayed awake most of the day. He spent fifteen minutes in the standing frame, then later on two physical therapists, with help from Betsy, got him on an exercise bicycle. Betsy said it took one therapist to hold him on and she and the other to keep his feet moving on the pedals, but after awhile she said it felt as if Ross was working with them. After so many hours on a bicycle in all his years of racing, it's got to be almost like a "muscle memory" for him. He took a short nap this afternoon, but after his bath he was wide awake. When Rusty left this evening, Ross was still awake and appeared to be watching TV.
   Thank you for your thoughts and prayers, and your continuing support.

April 7, 2003 9:00 PM--Betsy said today was an "okay" day...she thought Ross had passed the swallow test, but the respiratory therapist came in for a second check and discovered a small amount of dye when Ross coughed.
   Betsy said she fully believes he'll pass it soon, but it's really frustrating getting him there! He's more alert and tracking well with the speech therapist. He follows instructions, but needs to be more consistent. They're giving him something to sleep at night to keep him more alert during the day, and he's going to be getting a cup of coffee in the mornings. The staff has worked out a schedule that is better suited for his abilities.
   Please remember Ross and his family in your thoughts and prayers.

April 6, 2003 8:15 PM--Betsy said she discovered today that Ross is not sleeping well at night. One of the therapists said when he checks Ross around midnight, he's generally awake, so he will be getting something to help him sleep.
   He was awake much of today, though, and spent time in his wheelchair outside. Betsy said she found herself looking at him and thinking, "I can say he really has made progress." She said he definitely looks as if he is improving.
   They had some visitors today, and all in all, it was a really pleasant day. Please remember Ross in your thoughts and prayers. You are all so important to his recovery.

April 5, 2003 8:40 PM--Betsy said Ross spent time in the standing frame again today, and it was really hard word for him. He is still really sleepy, which probably wouldn't be such a concern if it weren't for the insurance company's insistence that he show marked improvement for them to continue to approve coverage for two week blocks of time.
  The doctor is going to have an expert read the EEG to see if Ross might be showing signs of intermittent seizures. He is on anti-seizure medicine. Betsy wondered if part of his exhaustion might just be due to the high level of physical exertion he is expected to make each day. She's also going to see if he can get some coffee in the mornings with his breakfast to see if the caffeine will help.
   He spent time in his wheelchair today and worked on moving both arms, something he used to only do when the acupuncturist was working with him. One thing Betsy noticed that was new is that when he finished working his left arm, he kept it bent. Usually he just lets it fall down and to the side.
   He is definitely showing improvement, but whether or not it's enough for the insurance company remains to be seen. At least Betsy said Dr. Doherty is a believer! That's got to count for something with the insurance folks.
   Please keep Ross in your thoughts and prayers. Thank you so much for caring enough to check in on his progress through the website, and also for your messages in the guestbook.

April 4, 2003 8:00 PM--I talked to Rusty tonight. He spent the day with Ross and said he was really sleepy for much of it. The therapists keep him very busy all day, between standing in the standing frame and moving him in and out of his wheelchair, sitting him up on the bed, etc., but Rusty said the minute they leave him alone, he drops off to sleep.
    His CT scan results came back. He is no longer having seizures but there is some evidence of right frontal lobe atrophy where the brunt of the impact occurred. The scan also showed evidence of his surgeries, and those looked good, though there is some hydrocephalus, possibly due to the area in the ventricle showing the atrophy.
   He's not able to receive acupuncture at Kentfield, nor can he get the herbs and supplements he was taking at Herrick, but Rusty said the level of care at Kentfield is excellent. There is a huge level of demand on him. The doctor said they were trying to set up a more consistent schedule for Ross, which would make it easier for him to regulate his sleep/awake periods.
   Thank you for your healing thoughts and your prayers for Ross's recovery.

April 3, 2003 8:45 PM--Ross didn't pass his swallow test today. He aspirated a tiny amount of the dye and coughed it up. It wasn't much, but means he'll go back to square one and have to still do three successful tests in a row.
   The good news is he was approved for two more weeks at rehab by the hospital, which means the insurance company will most likely comply. He spent 20 minutes in the standing frame and his muscles were very relaxed when he sat down. His vital signs are excellent and when he was awake he was very alert.
   Ten months today since his accident. He has come through a lot of tough trials but he's come a long way. Thank you for your thoughts and prayers, and for your continuing support.

April 2, 2003 8:55 PM--I just talked to Betsy and she said today went fairly well, but Ross was really tired. She thinks it was because of the long period of time spent in the standing frame yesterday--fifteen minutes. He seemed really wiped out today.
  The speech therapist was in at three and couldn't keep him awake. He's a bit more "toney" than he's been, but then he's no longer taking the drug that was sedating him so much. It's a trade off to keep him more alert. The physical therapist had him up in the wheelchair and Betsy noticed he was sitting more erect and his head was on the headrest in a more comfortable position than they could manage yesterday. The PT told her Ross moved into the position under his own power. That's a really good thing!
   Thank you so much for keeping Ross and his family and fiancée in your thoughts and prayers. It will be ten months tomorrow since their lives were so irrevocably changed. 304 days. Yet no one has given up hope, least of all Ross. He continues his terribly difficult struggle to recover from devastating injuries with an unbelievable grace.

April 1, 2003 7:40 PM--Ross had an excellent day today. He passed his "blue dye swallow test" with flying colors. He needs to pass it three times before the trach can be removed. One down, two to go. He also stood in the standing frame for fifteen minutes, the longest since last August, before his setback with the added surgeries and septic shock. Betsy said he was very alert, raised his head at least four times and looked straight ahead. She said it was absolutely awesome. Thank you so much for your prayers and healing thoughts. It's really exciting to see him doing so well.

March 31, 2003 9:20 PM--Sorry for the late update. Betsy's cell phone battery was low so we couldn't talk until she got home tonight. Ross had a good day though he was sleepy for much of it. When Betsy got to Kentfield at 9:30, he'd already seen the speech therapist. The physical and occupational therapists arrived a while later and they got Ross into his wheelchair and he spent some time outside. Later they got him up in a standing frame, which definitely woke him up! Betsy said they used the left eye patch on him today and he was tracking very well and really tried to do what the therapists asked of him. He slept more in the early afternoon, then the occupational therapist was in around two to do range of motion exercises with him. He appears to be in much less pain, though his muscles are still "Tony," though not so much when he sleeps.
   Tomorrow they will give him another "swallowing test," to determine if he can be taken off the trach. It consists of giving him about 30 cc's of blue dye to swallow. If he coughs any of it up, it will show that he has aspirated the fluid into his lungs and still needs the trach.
   It would be terrific if they could get him off the trach completely, but it will depend on his ability to swallow without aspirating fluid. Please keep Ross in your thoughts and prayers.

March 30, 2003 7:45 PM--Ross had a good day. Lots of visitors today. Betsy said he's obviously not as sedated as he was at Herrick and is much more alert and aware of his surroundings. In fact, she said he was watching a Harrison Ford movie on TV when she left this evening, and definitely appeared to be paying attention.
   The physical therapist was there this morning and did range of motion exercises with him. Later in the day they got him up in his wheelchair and Katie took him outside to enjoy the gorgeous weather. It was close to 80° outside.
   Please continue to keep Ross in your prayers this week.

March 29, 2003 8:20 PM--Betsy said Ross slept most of the day, probably due to the new meds he was taking to reduce "toniness" in his muscles. Because it appears to sedate him so much, he's been taken off of it.
   Rusty and Ross's sister Ariel brought the dog down to visit him, but he didn't appear alert enough to notice she was there at first. They took the dog for a long walk, during which time Ross had a bath and also a special treatment with oxygen to help expand his lungs. When Ariel and Rusty returned with Josephine the dog, Ross appeared to be much more aware of her presence and was definitely more alert.
   There will most likely be a period of "trial and error" while the proper dosages of medications and therapy are worked out. Please keep Ross in your thoughts and prayers. It's so important that he show improvement so that he is able to stay at Kentfield for the therapy.

March 28, 2003 7:45 PM--Not too much news tonight. Ross is still going through evaluations. Rusty said he was sleepy today during his speech therapy, but Dr. Doherty had noticed he was much more alert early in the morning, so she has arranged for the therapist to be with Ross at 7:00 AM. He's currently getting about three hours a day of therapy: physical, occupational and speech.
   He spent about four minutes in the standing frame, which puts his full weight on his feet and legs.
   The caseworker is still trying to get insurance coverage on the custom wheelchair. No news yet. Please remember Ross in your thoughts and prayers, and thank you so much for your continuing support and good wishes.

March 27, 2003 7:30 PM--Betsy said Ross's day went "pretty well," though he was quite tired during a lot of it. He was fitted for a custom wheelchair, though it's still not certain if his insurance will cover it or not. He appeared to experience some pain and discomfort this morning, but Tylenol helped. Betsy said she's noticed he seems to be having more pain, but that's most likely because some of his medications have been discontinued. The trade off is more pain but also more awareness, since the meds have a sedative effect.
   They had him up in a standing frame for the first time in many months. Betsy said it feels really good to be back at Kentfield where there is a definite plan of action and everyone is so positive about Ross's recovery.
   Please keep Ross, Katie and their families in your thoughts and prayers.

March 26, 2003 8:00 PM--Just talked to Betsy and she said today went well. Ross was awake all day, except or a nap from noon to about one. They did a "swallowing" test on him today, and he did aspirate some of the dye. They will administer the test throughout the week until he can swallow without risk of aspiration. They give him liquid with a dye in it, and if he doesn't cough up anything blue for at least an hour, then they know he is swallowing okay.
  He was fitted for a wheelchair to use while at Kentfield, but the physical therapist was on the phone with the insurance company today to see about getting him a custom chair. Still, he spent about two hours in the chair today.
   I asked Betsy if she thought Ross was aware of the importance of how he does at Kentfield, and she said she thought he was. He's been very alert since the transfer. The next two weeks will be critical as far as Ross's continuing stay in rehab where he can receive much needed therapy. In Betsy's words, "Please pray that Ross will progress each week and be able to stay at Kentfield as long as he needs what they have to offer...pray for peace for him and the strength to participate in therapy."
   Thank you, everyone, for your continued support.

March 25, 2003 7:20 PM--Just talked to Betsy. She said today was spent with evaluations of Ross's condition, and said the first two weeks of his stay at Kentfield will most likely be more of the same. Physical, occupational and speech therapists worked with him today, but Betsy said she won't get much in the way of results until they've had more time. He was somewhat agitated today, and she imagined it was from the stress of the move from Herrick to Kentfield. He appeared to feel better after some Tylenol.
   The next two weeks will be very important to Ross's future with rehab. Please keep him in your thoughts and prayers. He still has a long way to come, but with your help, I fully believe he will come through this.

March 24, 2003 3:45 PM--I'm doing an early update, as Betsy wanted me to tell you that Dr. Doherty saw Ross today for his initial assessment after checking him in to Kentfield, and told Betsy this was the best she's ever seen him. She tested him after he'd been awake all day and had gone without any naps, and Betsy said he was still able to make very clear "yes/no" responses with eye blinks, track her movements with his eyes and in general display a much greater awareness and ability than the doctor obviously expected. Dr. Doherty is talking about taking him off of one of the medicines he takes for spasticity, as it also has sedating side effects. They also expect to have him weaned from the trach within the next couple of weeks.
   Betsy said he's got a very nice room with a window. Katie is there this afternoon, decorating it with familiar pictures on the walls and personalizing it as much as it's possible to personalize a hospital room.
   Thank you, everyone, for your thoughts and prayers for Ross and his loved ones.

March 24, 2003 2:30 PM--I just talked to Betsy and Ross is at Kentfield, settled into a room with a window. I will do an update later today, but wanted to let you know he was back in rehab.