June 2004 to December 2004
December 26, 2004 9:00 PM--Ross had a really nice Christmas and is doing well tonight, though he's still quite congested. Betsy said she squeezed some lemon juice into water and added a little sugar for him, but it was obvious the lemon hurt his throat.
He spent quite a bit of time in his recliner. Betsy said it's just great, as it's fully adjustable so they can really make him comfortable, and it allows him to sit in comfort and be with the family.
He's also moving around more and is very alert and responsive. As an example, Betsy said she watched him at the table during Christmas dinner last night--he was eating prime rib, peas, salad, potatoes--feeding himself and chewing and swallowing without any problem. If you'll recall, it was just a year ago at Thanksgiving that Betsy had to forego giving him pumpkin pie because she didn't think he'd be able to handle food that solid.
Betsy said she's also noticed that Ross is hungrier than usual, and he's lost some weight, most likely due to his increased activity and the obvious healing that is taking place. They're working on adjusting his caloric intake and providing him with more food.
Betsy said her hope is that by this time next year, Ross will be talking and able to do standing turns from one place to another, which will make traveling with him much easier.
I hope all of you had a wonderful--and safe--Christmas. I will probably not be updating again until the first of the year, due to family commitments. On a personal note, I want to thank the Dillon family for allowing me into their lives each time I call. Watching Ross's progress over the last two and a half years has been a most amazing experience and I consider it a privilege to have the opportunity to bring his wonderful story to so many people.
I want to wish all of you a very happy and safe new year.
Kate
December 24, 2004 11:00 PM--Note from Betsy:
Merry Christmas,
I thought I would send a note to go with Ross's picture. Ross helped me fill stockings and then we celebrated Christmas Eve with our own worship service. Ross was obviously touched by it. I also asked him if he wanted some of the fruit cake we always make and he nodded yes. He ate twice as much as I anticipated and he loved it. Again, he nodded yes to the cake and often shook his head about the tea which I kept offering him.
More later.
Betsy
December 23, 2004 10:00 PM--Betsy said Ross seemed fairly tired and quiet today, but thanks to his new chair he can still be with the family when he's resting, something he can't comfortably do in his wheelchair. However, in spite of his slower start this morning, he had a terrific session in the standing frame. Steve, the physical therapist, brought some "chocolate decadence" for Ross. Betsy said they were giving Ross pieces of the rich dessert, followed by drinks of water to wash is down. After a bit, Ross was nodding "no" to the water and "yes" to the dessert. Even after he finished the last piece, he was looking around for more. It was obvious he really loved it.
He continued to do well in the standing frame, knocking the cones off as quickly as they could be set up, and doing it according to color. Betsy said he did really well.
She also said the splint for his left foot has worked so well, the therapist suggested using it on his right. Luckily, the splint is adaptable for either foot.
I will be really busy with family over the weekend and may not get back to updates until Sunday. Please have a safe and enjoyable holiday weekend. Thank you all so much for your healing prayers and thoughts, and your continuing support of Ross and his loved ones.
December 22, 2004 9:15 PM--Ross really isn't an early morning person, but he was on the road to Stanford early this morning for a follow-up visit with the doctor who prescribed his Botox injections. The doctor noticed Ross was more alert and Ross was able to move his arm in all directions to show what he can do. The doctor put in a request for more Botox, and Betsy said they may also be able to get surgery scheduled for Ross's elbow.
Today Betsy was reading a Christmas letter from an old friend, someone who writes a lengthy, very funny note each year. She said Ross was laughing at the contents of the message, so it's obvious he's totally aware of what people are saying and what's going on around him.
Thank you so much for your prayers and healing thoughts for Ross and his family. Our thoughts are with you all for a safe and happy holiday.
December 20, 2004 9:00 PM--Ross had another restless night and was awake from 2:00 a.m until 7:00 this morning. He got some sleep during the day and was awake tonight when I called for the update. In spite of his sleepless nights, he's showing amazing improvement on a daily basis. Betsy said he's becoming more "outspoken" about his wants now. When Jeremiah, his caretaker, asked Ross if he wanted to work on the pedals, Ross shook his head no, but when Jeremiah suggested working on the mat, Ross nodded an emphatic "yes." He's eating really well--finished a huge enchilada for dinner tonight and Betsy said he might have eaten more if she'd offered it.
For those of you who are traveling for the holidays, please be safe. Thank you, everyone, for your thoughts and prayers, and your amazing support of Ross and his loved ones.
December 19, 2004 9:15 PM--I just talked to Betsy and she said Ross has been sleeping better at night until LAST night when he woke up at 3:00 a.m. When I called a little bit ago, he was still awake and had been ever since the middle of the night, but before we were off the phone he was sound asleep in his new chair. The chair has quickly become very popular!
One of Ross's therapists said he really needed a rocking chair as it would help with vestibular integration (The vestibular system is responsible for keeping your body upright and responding to the forces of gravity) so Betsy and Rusty went shopping for a rocker this weekend. Thanks to money from donations, they were able to buy a cushioned rocker that also reclines. When they first mentioned it to Ross, his response was negative, but once he got a chance to sit in it and rock, and also to nap while reclining, his attitude made a complete 180! Betsy said he can rock it himself and is really comfortable in the chair. The best thing is, it makes for a much more normal life for Ross.
A couple of other things to tell you: Betsy said she has been asking Ross questions and showing him pictures. She was surprised that he is totally unable to relate to himself as a little boy. When he sees the pictures of his sister, he has no problem "seeing" Ariel as a child as compared to Ariel as an adult, but he doesn't recognize himself.
Another point of interest is that Betsy has been asking him questions as part of his cognitive exercises. One question, for instance: Are you thin? He is unable to answer at this point...he really doesn't know if he's thin or not.
On a more positive note, Ross has suffered from low-grade anemia for many months, in spite of a diet high in protein and red meats. However, on his most recent blood test, he is once more back to normal. The only change in his diet is the "sugars" Betsy is giving him as a supplement--they're monosaccharids, which are building blocks for the brain.
Ross's growth is absolutely fascinating as he progresses from stage to stage in his development. He's already reached points of growth his doctors never expected, and yet he continues to do even more and progress even faster. Thank you, all of you, for your prayers and healing thoughts as well as your monetary donations which allow his parents to continue with the therapy and materials that are making such a difference in Ross's life. He wouldn't be anywhere near this far along without your help.
December 15, 2004 10:20 PM--Got an email update from Betsy tonight so will post that:
"Ross was awake from 1 AM until about 1:30 PM. He had an appointment with our wonderful chiropractic neurologist and after lunch he fell asleep. He awakened for a bath, fell asleep , then awakened for 12 bites of food, and is asleep again.
"Both the nurse, who had not seen him for five days, and the doctor remarked on his improvement in the last week. He is trying to speak, and is expressing more complex feelings."
I'll be back in town on Sunday and will have more to report then. Thank you all so much for your support, your prayers and your healing thoughts, especially now, during the busy holiday season.
December 14, 2004 10:00 PM--Ross had another sleepy day, though he woke up alert and ready to go this morning. Started out with physical therapy in the morning, including a session in the standing frame. The PT had him knocking colored cones off the tray according to color. Betsy said this time Ross waited for the therapist to line them up instead of trying to knock them over right away.
He also saw the doctor today for acupuncture. Betsy explained that Ross has been really congested and the doctor said he could be developing a food allergy. However, he did give Betsy an herbal tincture that might help ease Ross's congestion. Ross also had some blood tests done to check levels of medications in his system as well as sodium and mineral levels. Betsy said they're looking for a reason he's sleeping so much, though they realize it could be a sign of healing. Just as a baby might sleep for extended periods before a growth spurt, Ross's need to sleep might signal new neural connections or some other healing going on within his body. It's so hard to know until something actually happens! Anyway, after his doctor's visit, Ross slept all afternoon. He was awake when I called tonight, though, and trying to get Josie (the family dog) to pay attention.
Please remember Ross and his loved ones in your thoughts and prayers. Thank you so much for your continuing support.
December 13, 2004 10:00 PM--Had the house full of grandkids tonight, so I was really pleased Betsy was able to send an update:
Kate,
I know it is family night and you are probably very tired-I certainly am and I am going to bed. Ross continues to be very tired and sleepy. He had a small petit mal seizure around 1 AM last night, but seemed to be alert afterward. He had fallen asleep at eleven, slept one-half hour, then awake off and on until four. He is still very congested, and has slept most of the day. We have an appointment with the neurologist tomorrow and I am going to suggest blood tests. I think that this is another one of those resting phases before the next big step forward, but it is worrisome. Will you be at home tomorrow night?
I'll be here tomorrow night and will talk to Betsy for a new update then. Thank you all, so much, for your healing prayers, your thoughts and your unwavering support of Ross and his loved ones.
December 12, 2004 8:30 PM--I just got off the phone with Betsy. She said Ross wasn't sleeping well last week so she finally gave him some meds to help, and he responded well. Slept most of yesterday and a lot today, but when Betsy asked if he might be sick, Ross nodded yes, so it could be he's had some sort of bug that's been bothering him. He's definitely congested, but not running any fever.
On the good side, he's been terrific about responding to questions. He also ate a really good dininer tonight. This morning, when he woke up he was able to raise his left leg all the way to his chest. His left side definitely appears to be "waking up." When Rusty went in to see Ross this morning, Ross raised his left hand and touched Rusty's face with his finger.
However, on the down side, Betsy said he's had at least three petit mal seizures, so minor as to be barely discernible but obvious if you know what to look for. However, when Ross is focused, he's REALLY focused, and Betsy said he is beginning to seem more like his old self.
Friday she and Ariel went Christmas shopping and were gone most of the day. When they got home, Jeremiah had just bathed Ross and gotten him settled. Betsy went in to see him, and he wouldn't look at her. Betsy asked if he was upset with her, but he still wouldn't look. Finally she asked if he'd missed her while she was out with Ariel. He still wouldn't look but he did start to grin. Betsy said it reminded her of the way Ross used to tease her.
For those of you who are interested in the financial commitment of keeping Ross at home, please read the latest update letter. It's posted here. Thank you all so much for your healing thoughts and prayers as well as for your unwavering support of Ross and his loved ones.
December 8, 2004 9:30 PM--Just a brief update to let you know that Ross is doing well in spite of a lot of congestion. Betsy said he woke up laughing and smiled a lot when Christmas carols were playing. It was a good day with Ross's typically full schedule. The amount of work his therapists, caretaker and family do each and every day is amazing, but it's all part of helping him recover from his devastating injuries.It's been over two and a half years now since Ross was hurt, and he's probably worked harder in the past few months than he ever did before, even when he trained to race. It's paying off with each new skill and every small step forward, but he can't do it by himself. Please remember Ross and his loved ones in your thoughts and prayers.
December 7, 2004 8:40 PM--Today Ross had a pencil in his hand and Betsy was helping him to write his name. Later, on his own, he was "writing his name" just above the paper. He's still having trouble connecting pencil to paper on his own, but he obviously has the concept. Betsy said his eyes seem to bother him, though they're definitely tracking together now. However, she doesn't feel he would benefit from an eye exam at this point, at least not until he's able to make more definitive answers to the questions an optomitrist would ask.
Another thing Betsy mentioned is that she's noticed Ross doesn't like it at all when she talks about his time in the hospital. She was discussing his early treatment with the therapist today and said Ross was very angry about it...she could tell because he wouldn't look at her or answer her when she asked him if he was upset.
Rusty got on the phone and talked about Ross's work on the mat. He's able to really roll himself around now. When he's way over on his left side, he can flip himself quickly to his back. It happens so fast, Rusty said he actually looks surprised! However, it's also very clear he's enjoying the activity and the fact he's finally mastered another skill.
They've been putting him in the standing frame a lot and Ross is able to stand fully erect, then rock and rotate around without losing his balance. He's showing a lot of control, which was obvious at another time today when Betsy decided to help him sit up straighter. She said she usually can't move him because Ross is so big, but this time he moved easily with a bit of help from her. His trunk strength and control are definitely improving.
Rusty said they also put him in the walking sling again today. It's supported by the Hoyer lift and he's held by a web that allows a lot of movement. Ross stands as upright as he wants and is using his left leg, which used to be relatively useless, as his support leg. He braces himself with it, and today was busy kicking the soccer ball with his right foot. His left leg no longer turns in like it used to.
His right arm is still drawn up, but that's due to the elbow injury. Still no final word on the surgery, though he does have an appointment at Stanford on the 22nd.
As Rusty said, it's amazing to see all the steps Ross is taking. His improvements are happening on a daily basis, with his mastering of new skills keeping his therapists busy thinking up new exercises for him. It's pretty amazing, so long "post-accident," to see him continue to improve at an even faster rate than before.
Thank you, everyone, for your thoughts and prayers, your continuing support and the wonderful notes you've sent to Ross and his family.
December 6, 2004 8:45 PM--Ross was tired today and Betsy said he seemed kind of sad, but that is to be expected as he improves and becomes more cognizant of his condition. However, both the chiropractor and speech therapist who saw him today were quite pleased with his progress.
Betsy said Ross's ability to eat and chew regular foods is improving. She fixed him braised lamb and sliced carrots and he had no trouble at all eating them. They're still using the chocolate sauce to get him to use his tongue. Betsy said they put it on his upper or lower lip and he licks it off, which seems like a simple enough chore, but up until a couple months ago, Ross was unable to extend his tongue beyond his teeth. Moving his tongue freely is an important part of speech, so each little step brings him closer to verbal communication.
They've added a third card to Ross's "yes/no" cards: "Ask me another question." Betsy said he's used it.
He's still knocking cones off the tray according to color, and they worked with the kickball again today. His coordination continues to improve.
Betsy said they also got him into a "walking sling" on Saturday, which consistes of a sling attached to the Hoyer lift they use to get him in and out of the bath. The sling supports him just enough to keep from falling but allows his feet to rest on the floor. Betsy said it's really difficult for him to balance himself, but he did beautifully. However, she also said she thinks that's why he was so tired today.
Please keep Ross and his family in your thoughts and prayers. Thank you all so much for your continuing support.
December 5, 2004 10:45 PM--When I called Betsy tonight she said a lot had been happening, and after talking with her I have to agree! For instance, Saturday morning when she was making Ross's breakfast, he paid attention to her instead of his dad, who was trying to work on some therapy with him. Rusty turned Ross's wheelchair around so he'd have to concentrate on the business at hand, not on what was coming up for breakfast. Ross used his foot to back the wheelchair up and turn it around so he could go back to watching what was really interesting!
On Thursday, Corinne, the physical therapist was working with Ross. She put the colored cones up on his standing frame tray and asked him to knock them off by specific color, which he did. He repeated the exercise later while in his chair. He's also been batting helium baloons around, using a cardboard tube (the kind that comes off of a coathanger). He used the tube to knock cones off as well.
Another episode in the standing frame occurred when he'd had an excellent session, standing very straight, leaning from side to side and catching his balance without assistance, but after fifty minutes he was getting tired. Betsy said Ross reached out and pushed the release lever forward which drops him back into his chair. Unfortunately, his chair wasn't in position so they had to stop the release until they could get his chair placed under him. After Ross was down and settled, they played soccer, moving a ball back and forth with their feet. Ross would kick sideways to Jeremiah and forward to Corinne, and Betsy said it was obvious he was thinking through the moves.
He continues working with many of the same skills he's developed over the past months, fine tuning them and growing stronger and more proficient. Speech still eludes Ross, but Betsy said it's just a matter of time. I can't wait to know what he has to say...and I imagine it will make his therapy even more efficient once he can speak and let his therapists know exactly what he needs.
Please continue to remember Ross and his loved ones in your thoughts and prayers. He's come so far, and though he still has far to go in this recovery, his baby steps are growing larger and longer every day. It's really exciting to talk to Betsy when I call for updates, because every time we speak there is something new to report. Thank you so much for your continuing support and healing thoughts.
December 1, 2004 10:15 PM--Just a quick update to let you know that Ross had a great day, including a visit to see his neurologist. Betsy said the doctor was amazed by Ross's improvement, and seemed surprised at how attentive he was. As they were leaving, Betsy said the doctor looked closely at Ross and said, "Ross, you are getting better."
Considering the fact none of Ross's doctors, in the beginning, held out much hope for him, it's pretty amazing to see how well he is doing, and it's truly gratifying to have the physicians noticing. It's been a lot of work and will continue to be hard work, but Ross is definitely getting better.
Please keep Ross and his loved ones in your thoughts and prayers this holiday season.
November 30, 2004 9:10 PM--I just talked to Betsy and she said Ross is doing really well tonight. He had just finished a session on the floor mat with his physical therapist and was really limber. Betsy said Jeremiah had worked with him on the mat a couple of times during the day, and it really showed in tonight's session with the therapist.
Betsy said they've discovered that Ross is almost always in pain from his elbow injury. The elbow was badly broken when he was originally injured and the subsequent calcification and bony growth has gotten worse. With Ross's increasing ability to communicate with nods and gestures, he has been able to let them know how painful it is. Betsy is hoping they can get him scheduled for corrective surgery to repair the damage and help alleviate the pain.
Ross surprised his folks with a new move tonight. After having his teeth brushed, he flashed a smile to show them off to his dad, then stuck out his tongue...both are movements he couldn't have done a few months ago. Then he puckered up his lower lip, as if making a face. Betsy remembers him doing the same thing when he was younger, but this is the first time he's been able to do it since he was hurt.
Just a small thing, but another step forward, and they all add up...just as the donations add up when folks work together. David Carr of Napa Valley Velo contacted Rusty today to let him know that the benefit cyclocross race at Infineon Raceway raised $1000, an absolutely awesome donation. Our heartfelt thanks to Napa Valley Velo and the Infineon Raceway Cycling Team.
Thanks too to all of you for your support, your healing prayers and your kindness. Ross's recovery is a long, slow process, but he continues to show improvement well beyond many of his physicians' expectation. Thank goodness his friends and family have always believed in him.
November 29, 2004 9:30 PM--A belated Happy Thanksgiving to all of you. I was away for the holiday and just back to catch up with Ross's mom for an update. There were twenty-five people at the Dillon table for Thanksgiving, and Betsy said Ross enjoyed every minute. He ate everything--last year at this time they were hoping he could tast pumpkin pie, but he wasn't able to do it. This year he ate turkey, dressing, potatoes, stuffing, yams, salad, pie and coffee. Betsy said he was eyeballing someone's wine so she gave him some non-alcoholic wine...with all the meds he's taking, alcohol might not be a good idea! Ross had a great time and the difference from last year to this is absolutely amazing.
On Saturday Ross went to Infineon for the bike races, but Betsy said it was really hard for him. When she asked Ross if it made him sad, he nodded yes. It's got to be tough, now that he's probably remembering what he used to do.
Over the weekend they decorated their Christmas tree, and today Ross saw the chiropractic neurologist. The doctor asked Ross if he wanted the adjustment, which Ross usually doesn't like, he nodded yes. He also agreed he'd like the work done with the doctor's tools, not his hands, so he's showing a preference for the way he wants his treatments done. Betsy said he's very aware of all that goes on around him, which is definitely a good thing.
I hope all of you had a wonderful Thanksgiving. We are all so thankful for your continuing support of Ross and his family. Thank you so much for your healing thoughts and prayers.
November 24, 2004 8:50 PM--Ross had a really good day and is doing well. Friends are beginning to arrive for a big Thankgiving celebration, so Ross is seeing a lot of folks he may or may not remember. Betsy said he's participating in conversations a lot more, nodding and shaking his head in answer to questions. He's also showing more facial expression. Betsy wanted me to remind you that Ross will be at the Infineon Race Track on Saturday for the Sonoma Valley Cyclocross.
To all of you, our wishes for a wonderful Thanksgiving. Please, if you're going to be on the road, drive safely.
November 23, 2004 8:45 PM--Betsy has been away all day and I just talked to Rusty for the update...it's been a "Jeremiah Day." Jeremiah is Ross's number one caregiver, and according to both Betsy and Rusty he is absolutely the best. He kept Ross busy all day long, beginning with his physical therapy with Corinne this morning, who donated her time as her Thanksgiving gift to Ross. She and Jeremiah, with a lot of help from Ross, got Ross into the standing frame for a really good session. Later on Ross had PT with Steve, who had him on the mat working out. In between and all around PT, Jeremiah kept him busy all day long, and Rusty said Ross was working hard at knocking cones off his table and really paying close attention to Jeremiah when Rusty got home from work this evening.
Rusty wanted me to let you know that he's finally got Ross's phone line for evening updates working properly. Please call 707-799-8868 for updates any day of the week.
Thank you so much for your continuing support of Ross and his loved ones. To put his recovery in perspective, go to the updates from this time last year. There was excitement because he raised his arm and grabbed a lift, though Betsy was disappointed he wasn't able to have pumpkin pie for Thanksgiving dinner. Ross is now able to scoop his own food up with a spoon and eat it. Doctors said if he didn't show progress in the first six months, he'd never improve, yet his skills continue to develop at an accelerated rate. This past few months have been absolutely amazing. Thank you so much for your prayers, your healing thoughts and your wonderful, encouraging notes to Ross.
November 22, 2004 9:50 PM--Betsy said Ross is doing really well. His speech therapist was absolutely delighted with his progress. Betsy said she took a burrito with them to the appointment today so the therapist could see how well he is able to eat. The doctor had made apple crisp to share with her staff and patients, and Betsy gave some to Ross. She said he loved it and was very quick to respond when she asked if he wanted more.
He also saw his chiropractor for a visit. The doctor said Ross's eyes were "teaming" better than they have before. He was doing the "adjustments" which Ross doesn't particularly care for. At one point, Betsy said Ross glared at the doctor and said, "Stop, now." There was no sound, but it was more than obvious what he was saying!
Betsy also had the "yes" and "no" cards with her. The doctor asked Ross a series of questions, then reversed the cards to see if Ross was able to read them. He was, and had no problem pointing to the correct one.
He's able to move his mouth and tongue now without any problem. Can stick his tongue out beyond his lips on command, something that he needs to be able to do to "remaster" speech. Betsy said he also is able to do a "toothy" smile when she asks him to show his teeth, and there's no longer any hesitation when he's given a command. His improvement really is amazing.
Thank you so much for your continuing support, your healing thoughts and wishes for Ross's recovery. He continues to astound all of us, including his therapists and doctors.
November 21, 2004 10:15 PM--Talked to Betsy earlier this evening and she said Ross has been really sleepy lately, probably due to new meds he's been taking. Still, he's doing great in physical therapy, moving from his stomach to his side without prompting. He's drinking almost all of his fluids by mouth. When I asked Betsy about whether or not they might remove his stomach tube, she said they would probably wait until after his elbow surgery...though it's not a certain thing, she said it looks like it will have to happen for him to have more mobility.
Ross is showing so much improvement, not only in the standing frame, but on the mat, as well. Thank you, everyone, for your continuing support and healing prayers. He's already surpassed his doctors' expectations and there are no limits as to how well he will do. Thank you.
November 17, 2004 8:00 PM--Ross is still sleepy...in fact, when I called at 7:30 he had been asleep for about three hours, but Betsy said that was following an acupuncture session in which he was very alert and seemed interested in the procedure. She said she feels there are huge cognitive changes going on right now. Ross is understanding everything that's said to him, he's responding well, he's eating real food and chewing and swallowing without trouble. It's as if the small changes and signs of growth are all beginning to come together. Please keep Ross in your thoughts and prayers, and thank you so much for your tireless support.
November 16, 2004 10:00 PM--Ross was really sleepy today, in spite of a trip to the doctor in Santa Rosa. Betsy said that around 5:30 he was actually sitting up and pedaling on his trainer and was sound asleep! It's electric-assisted and his feet were going around, but Ross was out for the count. He also seems very sad, and Betsy said it's obvious he's thinking about what is different in his life and what he's lost. However, his neurologist said today that Ross is definitely "neurolinguistically aware." He understands everything he hears.
This will probably be a difficult time in Ross's rehabilitation, as he remembers the life he's lost and realizes the struggle he faces. Thank you, all of you, who remember Ross in your prayers and keep him in your thoughts. He really needs you now.
November 15, 2004 9:00 PM--Betsy sent me an update that really opened my eyes to how far Ross has come. When you read this list, think back to how he was doing just a few months ago. It's totally amazing!
Kate,
Ross has done so well this week. I think it is easier to tell you all the NEW things that he has accomplished.
1. Ross now sticks out his tongue on command. When we saw the neurologist on Wednesday, he asked Ross to stick out his tongue and he did. For the last two and a half years, doctors and speech therapists have asked him to do that and he couldn't.
He also asked him to raise his right hand and Ross did it without hesitation.
3. He also shrugged his right shoulder when I was asking him if he wanted to stop on the way home from the doctor's.
4. He is standing taller in the standing frame and sitting taller in his wheel chair.
5. Rusty saw him stretch while sitting in the wheel chair and he said that it was a normal stretching, something we have not seen when he was sitting.
6. Yesterday, the nurse observed him moving his head side to side as he was listening to music.
7. He now can roll from his back to his side when on the floor without any assistance.
8. He is biting and chewing. He continues to enjoy rice cakes with soft cheese, peanut butter or butter. He is also chewing his food. He has been eating meat loaf, green beans (cut into pieces about an inch long), salad. For breakfast last week he ate a breakfast burrito and ate the whole thing.We just cut it and gave it to him.
9. He is drinking more unthickened liquids at a time. For example, at 5 AM one day, when he drank 200 ml water.
10. His communication is more and more reliable. He is using head movements, touching the cards, or if he is just too tired, he looks at the card. I have ordered a computer program that will print out icons for communication.
11. Lisa, the nurse, asked him if he wanted to learn to do some things (she listed them) and he said yes. Bryan, one of our caregivers, lets Ross hold the telephone shower when he gives him a bath. Last night, Ross was squirting water in his mouth and
swallowing it.
12. We now ask him if he wants the arm splint on. The elbow sometimes hurts and we think he will have to have surgery in order to ever extend his right arm. He communicates yes or no about whether he wants to wear it.
13. Ross woke up laughing yesterday, and he laughed a long time. His whole face was more relaxed and his mouth opened wide.
14. He is still asleep now. He slept from 11 till 1 AM, and was then awake until 7 AM. I woke him at 1 PM for medicine. We will let him sleep a little longer and then start the day. It is good to be able to let him rest today, we are so busy. I also see this sleeping-in as a more normal event.
Our new physical therapist is wonderful and so is our PT assistant. I was so worried about losing our two PTs at the same time, but it is working out.
Betsy
Isn't this all awesome?
Personally, I think it's beyond awesome! Ross is doing so well, but it's because of the dedication of his family and friends and a wonderful team of therapists--and it's also because of all of you, the amazing people who continue to keep Ross in your thoughts and prayers, who support Ross and his amazing team both emotionally and financially. I hate to think where he'd be now if he'd been left in the care facility where there was minimal therapy and attention given. Ross is living proof that love and care will help the severely brain injured heal.
November 9, 2004 9:15 PM--I've been away but talked to Betsy tonight. She said she's just awed by Ross's ability to communicate. He's definitely improving, answering yes and no with head movements, pointing to "yes" and "no" cards and even reaching out and touching the cards. He's been really tired the past few days, but she thinks that's because he's been so congested.
They've been trying a new product that is supposed to help "cell communication." Betsy said she's done a lot of research on it (and no, I didn't think of getting the name of it and I'm sorry!) and said if it doesn't work, it won't hurt Ross, but if it does work, it could make a tremendous difference in his recovery. The product consists of polysaccharids (sugars) that supposedly cause stem cells to migrate to where there are damaged cells.
He had physical therapy twice today, this morning and later on this evening. I asked if Ross knew his therapists, and Betsy said he definitely recognizes them. He's doing well in the standing frame. The last few times he hadn't been standing up all that straight, but today after a great session on the mat he stood up really straight in the frame and didn't use the support in front at all.
Betsy said they've gotten him a drum pad but haven't done much with it. She really wants to sit down and work out a more consistent program for his cognitive work, but their days are so full it's difficult to find the time. "Two days," she said, laughing. "I need two days to concentrate!"
When I talk to Betsy and hear their schedule of therapy and doctor's appointments, I can understand her frustration. There just aren't enough hours in the day. I asked if Ross is trying to speak and she said yes, that he's making very loud noises not associated with coughing or clearing his throat, as if he's trying to recall the process it takes to form words and make sound. He does mouth words that are fairly clear to understand, and even raised his hand in greeting to a visitor today.
He's come so far. Ross still has so far to go, that it's easy to forget just how much he has gained. A year ago, much of what we take for granted now was just a dream. He's feeding himself and eating foods that require chewing, something he wasn't even close to not that long ago.
Thank you all so much for your continuing support, your kind notes, your healing thoughts and most of all, your prayers for Ross's recovery. You are all an amazing part of his team.
November 3, 2004 9:30 PM--Ross did really well on his trip to Stanford. It's a long day for him, especially with the heavy traffic, but Betsy said it was a good visit. The doctor examined him and said he thinks Ross's triceps muscles are strong enough to support his elbow--his biceps was causing his arm to draw in until the botox released the tension, but the doctor was worried that his triceps wasn't strong enough to eventually give him full movement. However, he thinks it is and will recommend surgery to repair Ross's damaged elbow to give him more mobility. His elbow was seriously injured in the accident, something that's never been thoroughly addressed.
Betsy said today was really good. Ross continues to nod "yes" and "no" to questions. He was also very solemn and sad for awhile, and when Betsy asked him if he was remembering, he nodded his head yes. That's got to be so tough for all of them--as Ross remembers his life before this nightmare he can't help but feel terribly sad over what he's lost.
I hope, at some point, he'll also realize all he's gained. It still truly amazes me that so many people continue to pray for Ross, donate to his fund, read this website and keep him in their thoughts as he goes through the difficult job of healing from such serious injuries. Many of you knew Ross before, but just as many have only known him since he was injured, and yet you remain among his strongest supporters. Thank you so much for being there for Ross and his loved ones.
November 2, 2004 9:45 PM--Just a brief update tonight. Talked to Betsy and she was laughing about something that happened today. Rusty had called and asked something about Ross, so Betsy went to Ross and said, "Daddy called and he said..." and Ross shook his head vigorously, as if he didn't want to hear. Almost an hour later, Betsy brought the subject up again. "Daddy called and..." Once again, Ross shook his head. He didn't want to hear. Not good for Rusty, but obviously Ross's short term memory isn't as bad as they've thought!
Tomorrow is a follow up trip to Stanford for a check on the Botox, but today was pretty darned good. Ross had an excellent session in the standing frame. At first he wasn't responding to questions, but he did react well to the Yes and No cards, even putting his hand on the proper one for his answers.
His improvement is so amazing, especially considering the injuries Ross has had to overcome. Thank you so much for your prayers, your support, and your friendship.
November 1, 2004 9:20 PM--I can't believe it's November! Just typed the date and it startled me...Betsy sent me an emailed update for today, so I'll just print it below:
Hi,
Ross had a good day. He started the day being sleepy, but after the 20 minute trip in the car, and a wait for the chiropractor, he had a good session. Then another drive of 40 minutes to speech where he demonstrated all the gains he has made this week in chewing. The therapist had never seen him eat a rice cake. She put some of the cranberry relish we had on the rice cake for him to eat, and when she asked him if he wanted more, he nodded yes. He responded to questions several times. In fact this was the first time he had consistently communicated with her with head movements. When she said goodbye to him, he mouthed "bye." She said she thought his progress from last week was phenomenal. Understandably, he was really tired after this. Eating and all of the wonderful tongue movements are still exhausting for him at this point, especially when it lasts almost an hour.
After a rest, he spent an hour on the mat, most of it on his stomach and scooting around on his stomach. Then an hour on the pedals before dinner. Dinner required more chewing.
Upper respiratory congestion continues to be a problem, but it is much better than two months ago.
Tomorrow is another day with more to work on, and more progress.
October 31, 2004 9:11 PM--Betsy said Ross had a great weekend and today was especially nice. He's slept through the night the last couple of nights and then remained awake during the day. He's much more agile while feeding himself, is chewing well and able to use his tongue a lot better in moving food around. That may seem like a fairly simple thing, but for over a year and a half Ross was unable to move his tongue at all. Now he can lick his lips. Think of all the things your tongue does when you're eating and talking.There are so many different movements that require a lot of control--slowly, but surely, Ross is regaining all those abilities.
He's also responding well to questions with a shake or nod of his head. Betsy said that when they're not quite sure of his answer, they're using large YES and NO cards. Ross either nods toward the one he wants, or sometimes even touches it. He appears to be trying to vocalize, and sometimes seems so close to speech. It can't be far off.
Thank you everyone for your continuing support, your prayers and healing thoughts for Ross's ongoing recovery.
October 27, 2004 10:00 PM--Other than a frustrating doctor's appointment (an hour and a half wait and a doctor who wasn't really sure why they were in his office...) it was a pretty good day. Unfortunately, there are doctor's appointments away from home every day this week, so please hold the good thought for Betsy and Ross, that things go smoothly and well.
Betsy said they made a trip to Whole Foods Grocery and after testing the rice in the deli, ordered some for Ross. Betsy got a salad for herself and they sat outside and ate. Ross is doing so well now with foods. It's really amazing to see how far he's come in such a short time.
He'll be going back to Stanford for more followup on what the Botox is doing. It's loosening his biceps and now it's down to whether or not the triceps is strong enough to move his arm in and out. Ross is doing so amazingly well...thank you for your support, your prayers and healing thoughts.
October 26, 2004 8:40 PM--Received another update from Betsy--I really love it when she's able to find time to write to me, as it's so much better to get her direct perspective. The schedule they keep, day after day, is so exhausting that it's a real treat when she can actually take the time away from working with Ross to sit down and write a note.
Kate,
Ross was very tired again this morning, but he perked up after acupuncture. Afterwards, I said "Ross, it seems that acupuncture helped you feel better." Ross nodded yes.
We got his lab work done, and every thing seems okay. What a change to get the results within four hours. After getting blood drawn, we went to a taco shop for lunch. Ross had a burrito, and he did a masterful job of chewing and drinking his soy latte. He then ate part of my steak taco.
We all rested after we came home, and then at five Ross had physical therapy. The session was okay, but Ross was definitely not feeling well. After it was over, I tried playing ball with him and it took a while to get him to respond. I finally asked him if he was thinking about how things have changed. He nodded yes. I then talked to him about how it is sad and not fair, but we can't let it stop us. This is the hardest part for me. My heart aches for him and that he has lost so much. Please pray for Ross as he goes through this period of increased awareness. That he is aware of all this is a good sign, but it is so hard.
Betsy
At some point, Ross will be fully aware of all he has lost and all the horrible things his body has been through, but at the same time, at some point I think he's going to look at the letters in his guestbook, at the reports on this website and the amazing cadre of supporters who have been there since his accident, and he will see how far he has come. He has made such amazing gains since his accident, and so much of the credit goes to the wonderful support of all of you who have stuck by him throughout his long recovery. Thank you so much.
October 25, 2004 8:45 PM--I'm away part of each week and unable to work on the website, so I really appreciate it when Betsy is able to do an update for us! Just received the following note from her:
Kate,
Again, the days have been a blur of activity. Ross actually only had one appointment away from home last week. This week, he has five appointments away from home and four in home therapy appointments. This is in addition to daily sessions on the mat, the pedals, standing frame, etc. Work with a pencil and cognitive work.
Ross has seemed very sedated for the last five days or so. We are cutting back on the anti spasticity medication, Zanaflex, that we started two weeks ago. I am also requesting another lab test to check his sodium levels.
His sessions in the standing frame have been good and he is continuing to communicate with head movements. He mouthed yes to a question again yesterday. Rusty and Ross have been working with the yes/no cards and their equivalent head movements. When shown the cards, he has given us the correct head movements the last three days. This is now a daily activity.
It is clear that Ross is becoming bored with some of the things he has mastered, but which have little game value. Yesterday, and this is big news, I gave him a flat container of lentils, a large serving spoon and a small bowl. Ross spent 45 minutes scooping up the lentils, then dumping them in the small bowl. It was awesome to watch his problem solving and determination. I am sure he was exhausted and that may account for some of his fatigue today.
At speech therapy today, he ate a stew that had whole baby limas in it and did a beautiful job of chewing the meat and beans. Dr. Swain was delighted. This means we can start moving from always making sure his food is enough to swallow w/o chewing.
If anyone has ideas for keeping for things that Ross can do to practice his skills, we would love to hear them. Things that Ross can work on by himself are great.
Betsy
October 20, 2004 9:45 PM--Betsy said Ross seemed very tired today for some reason. However, when he was awake and watching funny stuff on TV, he laughed. He also woke up laughing and smiling. In general, he's doing really well. Cognitively, he may be doing far better than anyone is aware because he's still unable to communicate. I think that's got to be the biggest frustration for his folks, but he seems so close to talking. Thank you so much for your continuing support, for your healing thoughts and prayers. You are such a powerful part of his recovery and we really can't thank you enough.
October 19, 2004 9:00 PM--Just a quick note to say that Ross had a good day, though I'm lacking a lot of details because Betsy got called away early this morning when Ariel had an accident on the way to work. She's fine, but that's after rolling the car in the rain...I imagine Betsy's the one who's more shook up than Ariel. Kids are NOT supposed to do this to their parents!
Thank you so much for your continuing support, your prayers and kind words in Ross's guestbook.
October 18, 2004 9:45 PM--Betsy said Ross has been laughing all day. Now, whether or not that's a result of their doctor's advice to show Ross lots of comedy or not is debatable, but it's great to hear he's laughing. Betsy said it sounded like the "old days."
I asked if he had any residual effects from the seizure, but Betsy said, other than being really sleepy yesterday, he was doing great. Ross is very bright, very aware, and definitely responding to what's going on around him. He's really congested, but hopefully with the storm blowing in tonight the air will clear and he'll feel much better. Thank you so much for your continuing support, your prayers, and your wonderful notes to Ross's guestbook.
October 17, 2004 9:15 PM--Ross had a really huge seizure last night. Rusty said it could have been two or possibly one that seemed to settle, then took off again, but it was about eight minutes in duration. Ross's folks finally gave him some medication that helped calm the seizing, but it was still a pretty frightening, exhausting period. The one positive note that everyone hangs on to is the fact that so often the seizures come before great advances, as if new synapses are making contacts and new neurons are fireing...it's so hard to know for sure.
Rusty said Ross was tired today, but still had a really good day and didn't seem to suffer any ill effects. (I think his parents are exhausted...) Though he hadn't slept well on Friday night, Saturday was one of his best days, until the seizure occurred.
Betsy said he's much more communicative. She had a catalog with clothes in it and went over them with Ross. He nodded vigorously when she pointed to things she thought he'd like. Betsy also talked about Thanksgiving and all the foods that Ross liked, especially things they'd hoped he would be able to eat last year, but still wasn't ready for. She said he was really attentive, and responded to her descriptions of the different things on the menu. They had a really good evening, but she seemed to sense the seizure coming on, so she and Rusty were ready for it when it finally happened.
Still, Ross had his best standing frame session ever yesterday. He's shifting his weight, standing really straight and tall, and appears much more comfortable. Betsy said he's working with a new therapist now, but Steve appears to be really good with Ross and they're very happy with the work he's done.
Betsy said they're working on his hand and wrist, trying to get Ross to hold the proper position and not curl his fingers as he's been doing. Please, if you're saying prayers for Ross, pray for function on all levels, but on his right hand, particularly. Your prayers have a lot of power, so this isn't something we ask lightly. To all of you, thank you so much for your continuing support of Ross and his loved ones.
October 13, 2004 8:30 PM--Just talked to Betsy and Rusty...it was a busy day and Ross WAS NOT interested in getting up this morning, but once they got him out of bed he did well...of course it took him until lunch time to really hit his stride, but I've had days like that so I really sympathize! He's really congested from all the smoke in the air from the Rumsey fire over in Yolo and Napa counties, so Betsy was sure that had a lot to do with his lack of interest in things at first, but then she gave him a popsicle, which appears to be the new munchie of choice. She said after he had his popsicle, he was more alert, more active and definitely more responsive.
Betsy had to run some errands this afternoon so Ross was with his caretaker, but this evening he had a great session in the standing frame and was doing really well. She's ordered a special pen for him that has a large grip designed to fit his hand. They're hoping he can get better control of it and possibly that will lead to writing and better communication.
In the meantime, Ross's cost of care is once more an issue. His COBRA insurance ran out at the beginning of the month and Betsy said she got a real shock when she picked up his regular medications from the pharmacy--the bill was over $600. Medi-cal will help, but coverage is far from complete. He'll move into Medi-care after December, but once again, coverage is minimal. At this point, all the therapy that is helping Ross so much is covered by donations...his caregivers are extra and their costs are totally out of pocket, as well as some of the doctors that the Dillons take Ross to see.
Their appreciation to those of you who continue to help offset the huge expenses for Ross's care is beyond measure. Thank you so much for all your help. Ross continues to improve, far beyond the doctors' expectations, and it's due to the wonderful care of his family and dedicated caregivers and therapists, as well as to your healing thoughts and prayers. Thank you so much for your support.
October 12, 2004 9:15 PM--Today went really well. Ross had physical therapy in the morning. Instead of using the standing frame, Jeremy (PT) tried something different. He's been reading about "patterning," and decided to put Ross on the floor mat with pillows under his middle. Then he worked on moving his left leg and arm, as well as helping him turn his head to the left. They repeated the process with the right side. Betsy said the ideas behind the therapy are still controversial, but they're willing to try and see if it helps Ross.
After dinner tonight, Betsy gave him a popsicle. She said Ross wanted to bite big pieces off of it, but she made him wait until it had softened a bit so he wouldn't choke. She said Ross was really animated, licking it and sort of studying it, looking seriously at it and trying to talk. The cold is supposed to stimulate nervous response and she said it really appeared to be doing just that. At one point, Rusty carried his dinner over by Ross and sat down to eat. He offered him a sip of his wine, and Betsy said when Ross nodded yes, that he'd like some, it was a truly natural, normal movement.
The Dillons are trying to find a hyperbaric oxygen treatment center within an hour and a half of their home. If anyone has information regarding one, please contact Betsy Dillon.
Thank you so much for your continuing support and healing prayers for Ross and his loved ones. He still shows improvement, long past the period where doctors expected him to continue to heal. It's pretty exciting for all of us to see how far he has come, and how well he continues to move forward. You are all a very important part of this process--please don't ever underestimate the power of your caring.
October 11, 2004 9:20 PM--Ross had a really good weekend--Betsy said he's more communicative with vigorous nods and shakes of his head in response to questions...where he used to make a single movement to answer, he now nods several times or shakes his head vigorously. He's showing more progress in movement with his left side and continues knocking the cones off his tray with his right. He had a really great session in the standing frame and is holding himself very straight and erect. Betsy said he's also using his tongue more when he's eating--licking his lips, moving the food around in his mouth, even using his tongue to dislodge food trapped between his teeth. It wasn't all that many months ago he couldn't even move his tongue beyond his teeth.
Betsy mentioned a really interesting book she's reading, the Better Brain Book by David Perlmutter M.D. I've provided a link to the book at Amazon.com if you'd like to take a look. Betsy said it's not just for brain injuries--the book also contains a lot of interesting nutritional information as well.
Ross had a slight "not a seizure" tonight...he was on the mat working when he began blinking and showing signs of seizure, but after five minutes of seizure-like activity, he just sighed and was perfectly fine. It doesn't appear to be a typical seizure and leaves no noticeable after-effect.
Ross continues to show improvement. Thank you so much for your continued support, your healing thoughts and your prayers.
October 6, 2004 8:30 PM--Ross had a pretty good day today. Betsy told me he no longer takes his meds through his feeding tube, but instead takes them by mouth with a glass of water or juice. Hopefully, they'll be able to remove the tube before too long, but for now it's a good way to make sure he gets enough fluid in his diet.
Betsy said he's really nodding "yes" and "no" regularly in response to questions. He's also been sitting and listening to music, and has started moving his head to the music. He's looking really good, very alert and healthy. His mom really sounded upbeat when I talked to her tonight.
Thank you all so much for your prayers and healing thoughts for Ross and his loved ones. Thank you, too, for your wonderful notes in his guestbook. His mom reads all of them to him.
October 5, 2004 9:20 PM--I just talked to Betsy and she said Ross is doing well. He's on a new anti-spasticity drug that tends to sedate him a bit, so he's usually more sleepy than normal in the mornings and again late in the evening when he takes it. He saw the osteopath today and got the results of hair and urine sample tests. They show adrenal fatigue and low thyroid, which means he's essentially spending a lot of time in a "fight or flight" mode, ie: anxiety. Possibly it's from increased awareness of his condition. Betsy said she did talk to him today about his injury and the fact he's slowly getting better, and she mentioned things in his past, people he'd known, and she said he started to cry, which tells her he's very aware of the meaning behind her conversation.
Slowly but surely, Ross is getting better. Betsy and I talked tonight about the things he'll remember from this time in his life, if he'll recall stuff folks have said within his hearing. Thank you so much for your thoughts and healing prayers for Ross and his loved ones.
October 4, 2004 8:20 PM--I talked to Ariel a little bit ago and she said Ross was busy pedaling away and exercising, but she hadn't been there all day so couldn't really give me much of an update. Betsy emailed one to me last night, which I'll print here for you:
Thursday: We had a successful trip to Stanford. I feel blessed to be in the Stanford system and I particularly like Ross's doctor. The doctor prescribed a new medication to help reduce the spastic contracture in Ross's right hand. The Botox has helped, but they can't Botox all the muscles. Ross started taking the new anti-spastic medication last night. It makes him sleep for a couple of hours, and reduces his blood pressure for a couple of hours, but tonight, almost 12 hours after taking it, he is alert, less toney and doing great.
Ross was sick on Friday and Saturday: a low grade fever, fatigue and some pain. We think he had a virus; the rest of the family didn't feel well either. We let him sleep as much as he wanted.
We are getting used to the increased splinting regimen for his hands, right elbow and left foot. Ross is handling it pretty well. I think the elbow splint precipitated some soreness, but that seems to have lessened.
The big news is that Ross is showing us more and more that he understands what has happened and he is able to make connections between his disability and other people's injuries. We were watching a program on shark attacks, and in it a little boy had been attacked by a shark. Ross became very sad, and when I asked him if it made him think about what had happened to him, he nodded yes. I proceeded to talk to him, and between his nods (yes) and a shake (no), we talked about how hard it is now, and how much things have
changed.
Also, Ross ate barbecued meat that had been cooked until it fell apart, and he chewed it well. He also had his first pop sickle today. Really cold things hurt his teeth, but he learned how to reach part way with his tongue to touch it, and he also sucked on it. At dinner tonight, he has been using his tongue to move the food more effectively, and to collect pieces from inside and at the corners of his mouth. It seems that the work with the pop sickle helped.
Betsy
September 29, 2004 9:20 PM--Ross had another really busy day, with physical therapy in the morning, followed by occupational therapy and then time on the mat with Lisa helping him. The physical therapist hadn't seen Ross for a month and was really amazed by his progress, especially by how alert and aware he is. Betsy said they made an important discovery about the standing frame today--the tray was adjusted incorrectly and actually made it more difficult for Ross to stand up straight in the frame. As Betsy said, sort of a "du-oh" moment! They've got it set up properly now and will find out next time he uses it if there's an improvement.
They have to get up early and head back to Stanford in the morning for his follow-up exam. It's going to be a long day for all of them. Please keep Ross and his loved ones in your thoughts and prayers, that they have a safe trip through the Bay Area tomorrow.
September 28, 2004 9:10 PM--Betsy said Ross did pretty well, considering it was a really busy day and he was terribly congested today. Started the day out early with physical therapy and was fitted for two dynasplints: one for his left foot and the other for his right arm. After that they got him on the mat on his hands and knees. Betsy said the process was pretty labor-intensive and required pillows to support him, but the object is to replicate developmental steps. After lunch they took him to the osteopath for a treatment, then a stop at Whole Foods for groceries--they didn't get home until late. Betsy said that when she got to the store she asked Ross if he wanted anything, and he nodded yes. When she asked if he wanted coffee he nodded yes again. He definitely knows what he wants!
Tonight she said he was watching TV when I called but appeared to be thinking of something else. He does that often when he's had a really full day, and today was definitely busy. Thursday he goes back to Stanford for a follow up on the Botox. Also, Betsy said they're going to talk to a machinist to see if he can modify the Hoyer lift to make it taller so that they can use a walking sling with it. It seems as if there is always something they need to do to adapt equipment and make it more serviceable for Ross.
Thank you so much for your continuing support and your prayers for Ross's recovery. He continues to progress on this very long, slow but consistent recovery.
September 27, 2004 10:30 PM--Ross had a really busy day today, starting out with a trip to the doctor for blood tests to try and find out the source of his low-grade anemia. After that he saw the chiropractic neurologist who worked his left arm a lot and told Betsy they needed to do the same at home, as the exercise helps to stimulate receptors in his brain which helps them heal. Ross is using his left hand more and after Betsy moved the toggle switch closer, was turning the radio on and off at will. Ross also let his mom brush his back teeth, something he's been fighting. It wasn't all that long ago he couldn't even open his mouth on demand. He continues to be more involved in what's going on around him and is more alert and aware.
September 26, 2004 9:30 PM--Called Betsy tonight to catch up after being away since Wednesday and it sounds as if Ross is doing really well. She said the Botox is working to a certain extent, though there are still some muscles keeping tension that were not affected by the shot. However, Ross is using his hand more and showing more mobility.
Betsy spent the day home alone with Ross as Rusty and Ariel were working at the volunteer firemen's booth at a festival in Sonoma. She said they've installed a new toggle switch that allows Ross to turn the radio off and on and also a light. More things can be added to it, but they've started with just the two and Ross has done really well. Betsy said he grasped the concept immediately. He was using his right hand, but at one point when Betsy was adjusting the splint, he used his left. Moved it in very small increments, but the progress is obvious.
She said he's smiling more, laughing out loud, nodding yes and no to questions. He's also less congested and appears to be responding well to a pro-biotic Betsy has been giving him. Speech can't be too far away.
Thank you all so much for your continuing prayers and healing thoughts for Ross and his loved ones.
September 22, 2004 8:50 PM--Ross did really well today. He had an appointment with a dermatologist who removed a couple of questionable moles, one from his back and one from his arm. Betsy said he didn't complain a bit and was really cooperative. Later in the day he took a nap then had a great session on the mat. Betsy said he's really alert and it's more noticeable every day.
They noticed today he spent a lot of time just sitting and looking to the left. Turning that way is supposed to indicate the return of memory, and Betsy said he did that a lot today. He's reaching out for things with his right hand, and in many ways, following the process taught in child development classes as he relearns so many of the basics of existing.
Thank you so much for your support, your prayers and your healing thoughts. It's so exciting to see Ross continue to improve.
September 21, 2004 8:50 PM--Ross had a really good day today. He got the new splint for his elbow and when his therapist measured his extension, he was at 110 degrees. Normal is 180, but the fact that Ross is able to extend this far after all the injury and the contraction is wonderful. If he can work it out to 180 degrees with the splint, it will mean he won't need surgery to free up the joint in his elbow. His physical therapist thinks there is actually less boney protrusion on his elbow, which means some of the calcium may be breaking down.
Betsy said that when they were in the car today, she looked back at Ross and noticed his left hand had slipped off the tray of his wheelchair and dropped down by his side. She asked him to put it back on the tray, which he did. It was only then that she realized it wasn't his left, it was his right he'd dropped down, and that arm is usually tightly constricted and resting on his tray. She said when she told him to move it, he lifted it back to the tray. They were on their way to see the neurologist, who hasn't seen Ross for a month. He was really impressed with his progress.
Jeremy, Ross's physical therapist, said Ross's continuing recovery exemplifies what he was taught in school, that if you create the perfect environment with supportive care, a loving family, and proper therapy, the patient will improve. Ross is proof that this works.
On a personal note, my sister-in-law, Linda, is going in to UCSF for breast cancer surgery tomorrow. Please say a prayer for all women--and men--who deal with this disease. She's a terrific lady and I am definitely sending all the positive healing thoughts I can.
Thanks so much. You are such an amazing support group. I can't wait until Ross is able to read this website.
September 20, 2004 10:30 PM--Just a brief note to let you know that Ross had a good day with visits to his chiropractic neurologist and the speech therapies. Tomorrow he'll see the physical therapist, the occupational therapist and his neurologist, and on Thursday he's going in to have a mole on his back biopsied. Life right now sounds like nothing but a series of doctors' appointments, but it's so much more than that. Ross is doing well cognitively and is very alert. Betsy said it's getting much easier helping him in and out of the car for trips to appointments.
Thank you all so much for your thoughts and prayers for Ross's recovery.
September 19, 2004 9:00 PM--I called Betsy tonight to see how Ross's Botox shots went on Friday. It was a long day--they left the house at 7:45 in the morning and didn't get home until 3:00, but Betsy said Ross did really well. He had seven injections beginning at his biceps muscle to down near his wrist. They use a hollow needle that is inserted and moved around a bit to find exactly the right spot for the Botox, so it's a pretty painful procedure, and she said he was still sore today, but he did great at the hospital and tolerated the shots really well. They already see a difference in his mobility. His right wrist is definitely more relaxed. She said they'll be splinting him more often and using massage on his arm and hand.
Betsy said that while they were waiting for their appointment, Rusty waited outside with Ross and talked to him about the shots and the things they might eventually make it possible for him to do--drive his wheelchair, even at some point, the van. Ross was definitely interested in the possibilities.
Overall, he's chewing better and swallowing fluids with more control, not as congested as he's been, and he's very alert to what is going on around him, as well as better able to communicate--though he's still not speaking. Please remember Ross and his loved ones in your thoughts and prayers. You are all very much a part of the successes he finds each day.
September 14, 2004 8:45 PM--Ross's morning went well, though he was really congested today. Even his nebulizer wasn't helping. He had a good session in the standing frame, though it was obvious his congestion interfered with his concentration. He had an appointment with the osteopath this afternoon but seemed really tired afterwards. They'd just gotten him home and in bed for a nap when Ross had a petit mal seizure. Betsy said he remained conscious and alert throughout, but he definitely looked much better when it was over.
I'll be updating again on Sunday. Thank you for your prayers, your healing thoughts and kind notes in Ross's guestbook.
September 13, 2004 9:15 PM--Today when Ross was at the chiropractic neurologist's for a treatment, Betsy said he would flinch when the doctor worked along his neck...finally, Ross turned around, glared at the doctor and very clearly said, "Ow."
As Betsy said, at least this time she had a witness when he spoke! Even the doctor had tears in his eyes, and Betsy said Ross has been very alert all day. His speech pathologist was impressed with what he's doing now, and said it was highly unusual for a person with Ross's extensive injuries to continue to show such amazing progress. When he was in her office for his appointment, he ate a turkey roll-up that Betsy had fixed for him. She said when food got caught behind his teeth he was able to clear it out with his tongue...when only a couple months ago he couldn't even move his tongue beyond his lips.
He's kicking cones placed on the floor now, as well as pushing them off a table set far enough away that he has to reach, something that is difficult with his bad elbow. However, he appears to relish each new challenge and his competitive spirit is very much still there.
To all of you who continue to pray for Ross's complete recovery and who hold good thoughts for him throughout the day, a very big thank you. It may be a long, slow process, but it's all in a positive direction. He's truly doing amazing things, and it couldn't happen without your support.
September 12, 2004 9:20 PM--Ross has had a really good weekend. His sister Liz and her husband Warren were here for a visit. Warren set up obstacles for Ross to knock over in a more complicated pattern than he's been doing, and he did great. Betsy said that when they were stacking the cones for him to knock down, Ross mouthed, "I can do it," very clearly. He's still not able to produce sound, but the comments he shapes with his mouth are in full sentences. When he finally figures out the sound, he's going to do great!
Betsy said it was obvious from Ross's reaction to the entire process of knocking over cones that he's still very competitive. That certainly hasn't changed, and it's probably responsible for a lot of Ross's success so far. He doesn't like to lose!
His sister also got down on the mat with him and tried to get him to move forward. Betsy said he tried really hard, and acted as if his muscles were sore today when she tried to work with him, so he was definitely pushing himself.
When I called tonight, he was eating his dinner. Betsy said they'd watched a really smaltzy movie about weddings, a story where a man's three daughters got married, and Ross seemed sad. She wonders just how much he remembers about his own plans and said he was obviously upset after the film. Betsy said she told him about his accident and why so much had changed, but at this point it's hard to know how much he recalls...another reason we're all anxious for him to finally regain his ability to speak.
Ross continues to show improvement, to the point where he is amazing his doctors and constantly surprising his parents and his caretakers. It's been a long haul, but he still has far to go. Thank you all so much for your continuing support, and also for you thoughtful notes, both as e-mails to the family and notes in Ross's guestbook. Your kindness is a huge part of Ross's recovery.
September 8, 2004 9:30 PM--Ross did really well today, including an excellent visit with Dr. Adams, his chiropractic neurologist. Betsy said he's been really working hard, especially when on the floor mat where he is able to move around with a freedom he doesn't have in the standing frame. The doctor suggested Ross spend even more time doing floor exercises as they stimulate so much of his brain.
Betsy said that, as great as the standing frame is for Ross's therapy, it's not easy to use it as often as they want because it takes three people to get him into it. He still needs to have someone hold his foot in place as it wants to twist inward, and two to work with his upper body. We talked tonight about the possibility of using a brace, but Betsy said Ross is so close to having control over his foot that they figure it won't be much longer before they can get him into the frame with just two of them to help.
One interesting thing is that the homeopathic neurologist said Ross was allergic to fish. Betsy has been giving him supplemental fish oil tablets twice a day for quite some time, but she stopped them yesterday and said there was a noticeable improvement in Ross's responses today. She said he really seems to be trying to talk and she feels he's very close. He's definitely more alert.
On a side note: you've probably noticed I'm not updating every night, but it's because I've been out of town a lot and haven't had access to my computer. There will almost always be an update on Sunday, Monday and Tuesday nights, but the others will occur only if I'm in town. Hopefully, things will settle down before long and I'll be more consistent with my reports.
In the meantime, thank you all so much for your continuing support for Ross, for your healing prayers and thoughts of strength. You are all an important part of his recovery.
September 7, 2004 10:00 PM--Ross is 28 today. Now, since I've known him since he was about fifteen, I feel there's been a serious mistake made, as he can't possibly be that old, but he is and I am and guess we'll just have to deal with it. Time passes so fast it's scary. Thank you, those of you who sent messages to Ross's guestbook. Betsy said it was so neat to read them tonight when she finally got a chance to go online.
Ross had a really good day. A family friend came by with her four year old and a large card made by her eight year old. Also brought a birthday cake, and Ross ate three slices. Betsy said it's the first time he's had anything of that texture, she cut the slices thin and he managed to chew and swallow just fine.
Betsy spent time with the homeopathic neurologist today. Ross didn't go, but his mom was able to get a lot of interesting information that will hopefully make Ross more comfortable. Betsy is constantly working with Ross's diet to find the optimum foods for his recovery, though it's obvious he's in excellent health, other than his obvious injuries.
There's a real sense of optimism about Ross, as if the people who work with him daily know he's moving forward at an amazing rate. Your support is so much a part of his recovery. Thank you so much for your continuing prayers and healing thoughts.
September 6, 2004 9:15 PM--I'm just back after a number of days away and received an emailed update from Betsy after talking to her tonight. Tomorrow is Ross's 28th birthday. It's been well over two years since he was injured, and his recovery continues at a slow but steady pace. He's doing so much more than doctors thought he would ever manage, and though he still has along way to go, it's pretty amazing to see how far he has come. It would be a wonderful gift to Ross and his loved ones if you would say a special prayer for him tomorrow. Here's the update I received from his mom:
Kate,
This is the eve of Ross's 28th birthday. I have been feeling sad off and on all day. I looked back at the entries a year ago and realize how far Ross has come, and how much hard work he has ahead of him.
Ross has done some new things in the last few days. At 1 AM a few nights ago, Jeremiah saw Ross wiggling his left foot the way he does his right foot. This is the first time that we have seen this and means that his left foot and leg are starting the process of achieving more function. This is needed for standing, shifting, and eventually walking. Also, when Ross was waking up and stretching yesterday, he stretched his left arm up toward the ceiling.
He is doing much better drinking water from a glass. His chewing is good, but he appears to forget that he is chewing and then chokes a little. I notice that he really does do better when he is standing and then afterward. For example, after he has been standing, licking his lips, chewing, drinking unthickened liquids, and knocking the plastic cones off the table all go much better. Standing helps the brain to organize and work better. Therefore, it is really important that we reach the point where only two of us are required to get him standing. When we can do that, we will get him up at least three times a day. That will continue to give him practice with trunk control, weight shifting and correction -- all things that he needs for unsupported sitting, for starting to stand unassisted and then to walk.
After he was seated, there were two cones on his chair. He had knocked the easy ones off and these two were harder. Rusty said," I want you to knock this one off and then this one." (it was on the far left). Ross immediately started moving his right arm to obey.
He also is starting to use his mouth, his head and his arm to move things on his tray.
This is all very exciting for us in his fan club. Please thank everybody for their support. We can't do this by ourselves.
Betsy
August 31, 2004 9:00 PM--Things are going well today and Ross had a very busy and good day. Started out with physical therapy in the morning, including time in the standing frame, then a visit whit the cranial osteopath. Also talked to a rep from a company that makes an adjustable boot that should help with Ross in the standing frame. Ross was really relaxes after his visit from the cranial osteopath, who was really impressed with Ross's physical abilities.
Ross is doing more for himself every day, and obviously growing stronger. Thank you all for your thoughts and prayers and your amazing support for Ross.
August 30, 2004 10:20 PM--It was a really busy day for Ross today. Betsy said they saw the chiropractic neurologist first, and he was absolutely ecstatic about Ross's progress with knocking the cones off his tray with his right hand. What really surprised him, though, was when Ross was able to knock the cones off with his left hand. The doctor tried some special glasses on Ross that have a camera inside. It allows him to get film of Ross's eyes during specific movements and motions, which will tell him what part of Ross's brain is working during those times. Once he knows what is and isn't working, he can form a better course of therapy directed specifically to Ross's needs.
Ross also saw the speech therapist today, who recommended an allergist to help figure out what foods Ross should avoid to control his congestion. However, Ross was able to show how well he is now able to chew his food and swallow. Betsy said he's doing well with rolled up pieces of turkey (so long as there is mustard on it!) which he is able to chew and swallow without difficulty.
Betsy said his biceps muscle seems much looser and he's got better movement in his arms. Ross still hasn't had the Botox shot, but Betsy will check when he goes in for the appointment to see if he still needs it.
Ross continues to improve and grow stronger. Thank you so much for your prayers and healing thoughts for his recovery.
August 29, 2004 7:45 PM--I apologize for going so long between updates, but I ended up having to be out of town--unexpectedly--for a week and was not able to access my computer. Betsy sent a letter this evening with a great update:
Kate,
This has been a very busy week and people are on vacation, but Ross has continued to progress in spite of it. He really watches his caregivers a lot, but he also seems to be trying to communicate with me.
His physical therapy appointments have been very good. Getting him into the standing frame is easier and easier. The difficult part is getting his left foot in the proper position so that it is weight bearing. This prevents injury to his ankle and foot, but it also sends the right neurological transmission through the body's wonderful central nervous system up into his brain. I look forward to the two of us being able to get him standing (right now, one person keeps the foot and ankle in position while the other two help him lean forward and bring his arms up on the tray). Of course, Ross is learning how to do this as we do it each time. We want to be able to get him up three times a day for eating, watching television, and playing games. We feed him in the standing frame now, and as he moves to reach the food (we are moving the spoon all the time) he gets practice in weight shifting, trunk control, and position correction. These are things we learned as babies, and Ross is having to relearn it, but this time he has to control more height and weight as he learns. Usually Ross leans on the tray of his standing frame with both arms. On Thursday night, we helped him stand back a little without resting on his arms and he knocked the cones off the tray of the standing frame with his right arm. This was a first.
When he knocks the cones off his tray, he knocks them off faster than we can replace them. When we put a cone on his left side, he crosses midline with his right arm so that he can knock it off with his right arm. But on Friday, he knocked a cone off with his left hand twice. He was using the tiniest movement, but that is how function returns.
On Friday, we took Ross to get an EEG. It was necessary for him to keep his eyes and head still, a hard thing for him to do. There were periods, however, when he was very still. I think the stillness was volitional, and that when he started to move again it was because he forgot that he was trying to be still.
The speech therapist continues to be pleased with Ross's progress: opening his mouth wider, his tongue coming further out to lick chocolate off his lips, and he is chewing better. I am giving him pieces of thinly sliced meat for chewing practice. He is making sounds and moving his lips, as if to speak. I am praying that he speaks on his birthday, September 7.
Yesterday, when Lisa put him on the mat on his stomach with his arms under him, he turned himself 180 degrees around, ending up with his head where his feet had been. This is very exciting, and brand new.
We took him to St John's Petaluma today for church. This is the church where Ross grew up; he was an acolyte and it was the center of our social life. When we first arrived, his arm twitched a lot and he seemed overwhelmed. But when our friends came to speak to him at end of the service, he seemed to recognize some of them. I thought that he enjoyed the service. I also noticed him looking intently at one of the stained glass windows.
Bryan, one of our caregivers just set up the Atari game and Ross has his hand on the controller and Bryan has his hand over Ross's to guide him. This is the first time in awhile we have tried it, and his hand is much looser as is his arm. In fact, he has been lifting his arm up and to the side a lot. His ability to move his right arm this much has been developing over the last month and it is exciting. I almost forgot that Bryan was holding his hand up this afternoon and Ross was lifting his hand to bump Bryan's hand. Also, when Bryan pushed against Ross's hand, Ross pushed back.
Betsy
I just called and talked to Betsy and she said Ross ate a slice of turkey tonight--she put some mustard on it and rolled it up in a cylinder and he was able to eat it. While we were talking, he was feeding himself. She said that, all in all, he's had a really great day.
Thank you so much for your thoughts and prayers and your support for Ross and his loved ones.
August 22, 2004 9:30 PM--Betsy said Ross is increasingly more alert, he's moving his right arm more and with more control. They put a bunch of plastic cones on his wheelchair tray and Ross can knock them off as quickly as they can put them up. He's consistently having good sessions in the standing frame, and working hard at his exercises. He's chewing much better and Betsy said she made him some fresh salad using tomatoes and peppers out of the garden, chopped really fine, and he was able to eat all of it without a problem. He's responding well to yes and no questions and, as Betsy said, showing such consistent improvement that it's really exciting to watch.
Thank you so much for your support, your healing prayers and your thoughts of Ross throughout the day. I know he's got to be drawing on your energy--it's amazing what a powerful support group this terrific young man has! Thank you so much.
August 18, 2004 9:00 PM--Ross had an appointment with the orthopedist this morning. The doctor said surgery on his elbow should be covered by Medi-Cal and suggested that the Dillons wait until Ross has had the Botox shot before moving ahead with the surgery. There is a slight possibility that the Botox will loosen his biceps up enough that he won't need the operation to free his elbow, so everything has been put off for a couple months. Ross is scheduled for the Botox shot on September 17.
Part of Ross's exam today was to check for muscle strength in his right arm. It's very good, according to the doctor, which is a necessity if he's going to go ahead with the operation. Overall, Ross had a really good day today and was very alert and aware while in the doctor's office.
He looks good and continues to do well. Thank you so much for your prayers and your healing thoughts for Ross and his loved ones.
August 17, 2004 9:45 PM--Betsy said Ross's day today was even better than yesterday. He continues to improve, though the congestion did appear to slow him down some this morning, especially when he had his session on the standing frame. However, he had an appointment with his neurologist who is going to check into alternative anti-seizure medications for Ross, hopefully to find something that won't be as sedating. Betsy said they're still not sure what causes the seizures, though the doctor said Ross's are not as bad as many patients with similar injuries have to deal with .
After his appointment, while Betsy was dealing with the paperwork, Rusty got Ross out to the van and was lowering the ramp from inside. Ross was paying close attention, and Rusty made some comment about the advances in technology. Ross nodded in agreement, so he was definitely paying attention.
Betsy said Ross is also moving his right arm a lot more. Today he rubbed his nose--it required him bending his head down and reaching up, but it was a first for him. He also took a tissue that Betsy handed to him and raised it to his face.
Tomorrow morning at 8:30 he's got an appointment with the orthopedist about surgery on his elbow. It was badly dislocated during his original accident and never put in a cast, so every time Ross was taken in for X-rays, the technicians dislocated it again. Hopefully, arthoscopic surgery will be able to correct the problems he's got now from the constant re-injuring of the joint.
Please keep Ross and his loved ones in your thoughts and prayers. He continues to show improvement, and though his progress is very slow, it's always forward.
August 16, 2004 9:30 PM--Once again, a seizure appears to instigate more healing and advances for Ross. Though he did have two choking episodes today, which he managed to get through on his own, Ross also showed a lot more coordination and physical ability than he has in the past. Betsy said that at one point he was slumped over in his chair and she asked him if he could right himself. He was able to straighten up and move into a more comfortable position on his own. Betsy said he's definitely getting more control as well as strength in his muscles, and his improved coordination was evident when Betsy got a ball out and Ross was able to kick it back to her on consecutive returns for about fifteen minutes. She said he's chewing and swallowing better, and seems really close to talking. He even mouthed, "Hi, Mama," to her, though he still hasn't mastered sound. It's coming. He's getting stronger and healing more all the time. Thank you, everyone, for your prayers, your healing thoughts and your support for Ross throughout this long recovery.
August 15, 2004 9:50 PM--Ross had a four minute seizure last night and a much shorter one this morning. His doctor had reduced his Tegretol last week, so whether or not that is the cause is debatable. He doesn't seem to have any lasting effects, however, and had a good day today. Betsy said he has had a few moments where his expression told her he was trying to figure stuff out, as if he had a greater understanding of what was going on around him, but still didn't entirely understand.
Overall, though, he's doing really great and constantly moving forward.
August 12, 2004 9:30 PM--Just talked to Betsy and she is so frustrated! Ross was scheduled to go into Stanford tomorrow for the Botox injections to help his tight muscles but the distributor really screwed up. They refused to deliver the medication to the pharmacy in Sonoma any sooner than one hour before the injection was to take place, but the problem is, the hospital at Stanford where the doctor is going to do the injection is a two and a half hour drive away. What's even worse, Botox has a 90 day shelf life...it's not like a couple of hours is going to make a difference. Betsy said the pharmacist did all he could to try and get the medication in a timely fashion but to no avail. Hopefully, by the time Ross's appointment next month comes around, they'll have discovered someone who actually thinks who can get the medication to the pharmacy in time.
It's bad enough when you're dealing with a patient as severely injured as Ross has been, but to have to climb over stumbling blocks thrown in your path seems patently unfair.
Okay, so that's a bit of editorializing on my part, but I can't help but feel Ross's parents' frustration when they work so hard to help him and issues like this--which shouldn't BE issues--occur.
However, Ross is unaware of the problem and had an excellent day today. He slept through the night and then had a terrific session in the standing frame. He ate his dinner while standing and Betsy said that when she showed him a new toothbrush she got for him, he took it in his hand and put it in his mouth to try and brush his teeth. She said his focus and alertness is wonderful, and Betsy gives a lot of the credit to the visit to the osteopath. Her work with Ross really seems to make a difference.
In fact, so many people have made a difference in Ross's life since his accident. Thank you, all of you, for your support and healing thoughts and prayers for Ross and his family.
August 10, 2004 9:45 PM--Ross had a really full day today, starting with a terrific standing frame session. Rusty said that he's getting more familiar with the way this particular frame works and is able to better to adjust it to meet Ross's needs. Ross spent about an hour standing in it this morning with a short break--he also managed to eat an entire meal while in the frame. There was a problem finding the right kind of shoes for him to wear while in it, but Rusty said they finally ended up with some old flip flops that worked perfectly.
They also made a trip to see Dr. Tobin, the cranial osteopath, today. She does very gentle work on his spine but Rusty said the effect on Ross is amazing. He really responds to her manipulations and has much better movement after a session with the doctor. Rusty noted today that he had a lot more motion in his right arm than he's had in the past. After the visit, they took him home and he got a short rest, then was up working on the pedals for awhile. He also spent time in his wheelchair with the plastic cone on the tray. Rusty said he was able to knock it off on command. Before, when they did this, it was much more difficult for Ross, but today he had no problem. At one point Rusty said they put the cone on the left side of the tray, expecting Ross to knock it off with his left hand. Instead, he tried reaching all the way around with his right to try an and hit it. Rusty said to Ross, "You're almost touching it."
He said Ross nodded, and mouthed the words, "Ya, Ya..." as if agreeing.
All in all it was a great day today. On a personal note, I talk to Ross' s parents almost every night to update the website. I can always feel more energy in the conversation when Ross has had an exceptional day, and I had that feeling tonight, talking with both Rusty and Betsy. His progress continues to amaze all of us--he's not a quitter. Ross continues to heal, continues to do more for himself every day. Thank you all, so much, for your support, for your healing thoughts and prayers. Days like this tell all of us Ross is beating all the odds.
August 9, 2004 10:00 PM--Work on the standing frame really seems to jump start a lot of things for Ross. Betsy said he had a terrific day including his visit with Dr.Swain, the speech pathologist. She said Ross was showing amazing improvement, especially with his ability to chew. He's very alert and is beginning a new therapy program that utilizes classical music via earplugs, delivered in a manner that helps the brain organize in specific ways.
The recordings are set up so that different things are coming into each ear. Betsy said it's one more thing to add to their daily schedule, but she's really confident it will help.
Ross had his dinner tonight while in the standing frame. He had some lab work today that showed he had low sodium levels and was also low on chloride, so Betsy said they've cut back on his Tegretol to see if that will help.
A definite first tonight was when Ross allowed Betsy to brush his teeth with the electric toothbrush. In the past he's had trouble keeping his mouth open for her to do it, but tonight was great. He opened his mouth and was able to hold it open. The next step, hopefully, will be getting his elbow fixed, and then Betsy said she really expects to see some changes.
Thank you so much for your healing thoughts, your prayers and support of Ross and his loved ones over the past two years.
August 8, 2004 9:16 PM--Ross has had a really good weekend. One thing that is a new "action" is that he repeatedly knocked the dog's toy "kong" off the wheelchair tray so that Josie could fetch it. I asked Betsy what Ross's reaction was to the dog bringing it back and she said he seemed to expect it. Betsy said they're also working with him on reaching out to grab or touch things and he's showing a lot of improvement. His appointment with Stanford is on Friday where he's supposed to get the first of the Botox injections that should further loosen up the tight muscles in his hand, but he's already showing more movement in his elbow than he's had in the past.
A friend dropped by today who hadn't been there for quite some time. Betsy said Ross refused to look at him. When Betsy asked Ross if he was feeling shy, he nodded his head yes. He's understanding and responding so much better--he's also drinking fluids much easier and was able to drink a lot of water today. Betsy said she's really excited by how well he's doing.
Rusty finally figured out how to use Ross's wheelchair with the standing frame which will make it much easier for them. It requires lifting the front up and over the framework at the bottom, but once over the bar the chair fits just fine.
They have a new man helping on Sunday nights now, which gives Jeremiah a break. So far everything is working just fine. Please remember Ross and his loved ones in your prayers, especially on Friday when they make the trip to Stanford for the injections. Thank you so much for your support, concern and well wishes for Ross and his family.
August 6, 2004 9:19 AM--Ross is doing just awesome, according to Betsy. She said he's able to sit in a straight-backed dining room chair without leaning or wobbling, and they've got him eating his meals while in the standing frame. Standing, the movements of eating and balancing really seem to get his neurons firing--the combination of so many different actions have a definite impact on his overall alertness and coordination.
Betsy said the goal is to have him eat all his meals while standing. He still has the stomach feeding tube in, but it's used mostly to keep his fluid levels up. Drinking fluids is still difficult for him without some choking, though Betsy said he's getting better every day. Hopefully they'll be able to remove the feeding tube before much longer.
She said they're tying a lot of his "slump" in achievements over the past couple weeks to the loss of the original standing frame, as he's once again showing more rapid improvement. Overall, he's looking great.
Thanks again to all of you for keeping Ross and his loved ones in your thoughts and prayers.
August 4, 2004 9:55 PM--Ross did beautifully in the standing frame today. Betsy said she even celebrated with a bit of chocolate sauce, something that is NOT on Ross's diet, but which he loves. She also said he was able to sit in a dining room chair without any problem at all...just a few months ago he wasn't able to hold himself upright in the chair on his own, so his upper body strength and trunk control has definitely improved. He's still got a small amount of jerking in his arms, but it's getting better. He goes in on August 13 for the Botox injections in the muscles, so it will be really interesting to see how well that helps.
He's definitely doing better. Thank you all for your healing thoughts and prayers for Ross and his loved ones.
August 3, 2004 9:45 PM--Betsy said Ross did just fine today though he was still jerking his arms. She discontinued an over the counter antihistamine he's been taking as it can stimulate the central nervous system and is hoping that will help. Ross had acupuncture today and appeared to really benefit from it. Betsy was convinced he must have had a bad headache before going in, as he didn't seem to feel well at all and wasn't focusing well.
They're still trying to get the standing frame adjusted just right, though Ross had a good session in it today. The big problem is the fact his wheelchair is just a fraction too large to fit within the frame, so they're looking for one a little narrower to use with it. The chair can't measure anymore than 22.75" and Ross's is larger than that.
Tonight Betsy admitted that they were all tired and felt as if they were on overload. Caring for Ross is exhausting work, and though the rewards are great, the body occasionally needs rest. Thank you so much for your prayers for Ross and his family as well. You are a powerful part of his recovery and their ability to continue this amazing level of care.
August 2, 2004 9:45 PM--Betsy said Ross's arm jerking has eased quite a bit. It began just before his seizure on Saturday, but they've adjusted his medications and he's much better. Betsy believes he's experiencing pain a lot of the time lately, and after some Advil today he did appear to feel much better. He's getting a lot of movement out of his right arm, moving it on command, though it's definitely "gross motor control" as his elbow still won't bend. Still, Ross continues to improve and do more each day. Thank you so much for your healing thoughts and prayers.
August 1, 2004 9:00 PM--Betsy said Ross had a two minute seizure last night, but doesn't seem to have any residual effects from it. Lisa, the nurse who was with him at the time, gave him some Advil and more again this morning. He's very alert and appears to be responding well to conversation and activities around him. Our son Jon and his brother-in-law Cody visited for a bit today and Betsy said Ross really paid attention to Jon. We were wondering just how much Ross remembers of their friendship. As Betsy said, we won't really know until Ross starts talking, and he seems really close.
The standing frame arrived on Friday. It's a bit narrow and the wheelchair doesn't fit in it like they'd hoped, but Rusty said he thinks it's an adjustment that can be made with a few washers as the difference is barely an inch.
Betsy told me she dreamed this morning that Ross was standing and speaking. I'm keeping my fingers crossed that her dream is a foreshadowing of what's to come. Thank you all for your healing thoughts and prayers for Ross's recovery.
July 28, 2004 10:30 PM--Betsy said Ross had another good day today. He's following instructions and spending more time watching TV and really paying attention to the programs. The cool thing about following instructions is that today he actually did it when the physical therapist was there. She asked him to move his hand toward her and then away, which he did. She was really surprised, though it's not a new thing for him. As Betsy said, THEY knew he could follow instructions, he just doesn't always choose to do it for the therapists who are watching him!
Ross continues to progress with lots of little steps forward, but the important thing is that it IS forward. Thank you so much for your support, for your healing prayers and thoughts of Ross during this very long recovery.
July 27, 2004 9:45 PM--Ross is doing well today. His physical therapy session this morning was really great. He's able to sit on the side of the bed and feed himself, shift his weight from side to side without falling and can move his body around without help. He has someone behind him in case he gets off balance, but is essentially able to hold himself erect without help. Betsy said they're really glad the standing frame is due to arrive on Friday, as it's obvious Ross's previous sessions in the frame have helped him develop his upper body strength and improved his ability to sit upright without assistance.
When he is sitting in his chair, his feet are no longer strapped into place. He's able to move his feet about, occasionally crosses his legs or raises them to rest on a foot stool or chair. Although these might seem like fairly simple maneuvers, they are movements he was unable to make just a few months ago. He's definitely come a long way.
Thank you so much for your prayers, your healing thoughts and your amazing support.
July 26, 2004 9:30 PM--Ross is doing fine today. Moving his arm toward items of interest, eating well and generally having a really good day. His speech pathology appointment was canceled but he did get in a visit to the chiropractor. He's also finally set up with an appointment to see an orthopedist before his final insurance benefits run out on October 4 -- Medicare won't start for another 2-3 months, so Betsy said they're just praying that there aren't any problems during that period. Few doctors will even accept Medical patients because the payments for service are so poor, if at all.
As much as Ross has improved, he still has so far to go. Please remember him and his loved ones in your thoughts and prayers. Thank you so much for your support over his long period of recovery.
July 25, 2004 9:15 PM--Ross is doing really well. He had a visit on Friday with a cranial osteopath--the appointment was to have her take a look as his hand to see if she could help. Betsy new she was an osteopath, but had no idea what her specialty was. Betsy said they really liked her, she took a very complete history and then told Ross she would help him with his headaches.
Betsy said she frequently asks Ross if he's having pain, but she's not been able to isolate where/what was bothering him. She said that after the doctor worked on Ross for awhile, he seemed much more relaxed than usual and looked really great, which tells Betsy he probably has been having painful headaches. According to the doctor, they're very common with head injury patients, so it was really nice to see Ross reacting to her treatments so favorably.
He had a good weekend, watched the Tour quite a bit and seemed to be very involved in the racing. He's doing more for himself all the time, for instance feeding himself and righting himself when he slips to one side, especially in the car. Betsy said they've been told to concentrate on "above the waist" activities, as that will help fire the neurons that speed other parts of his recovery and hopefully will help him to talk. Betsy said he's definitely mouthing words, but not getting any sound.
The standing frame they've purchased will be shipped tomorrow from Texas by UPS. Betsy said they're really looking forward to its arrival as it's obviously something Ross really needs and does very well with.
Ross continues to show improvement, taking more steps forward than back. A friend of Betsy's was here visiting this weekend and she hadn't seen Ross since Easter...she was amazed by his progress.
Thank you, everyone, for your steadfast support and your healing prayers and thoughts for Ross.
July 22, 2004 9:15 PM--When I talked to Betsy tonight, the first thing she said was, "Ross continues to astound us." As an example, she said they told the occupational therapist about Ross moving the beach ball around with his feet and the OT tried to get tried to get him to do it for her. He was tired and not willing, so the OT asked Ross if he would "touch it." He leaned over and very carefully touched the ball with his head. As Betsy said, not only did he follow the instructions, but he did it with typical "Ross humor." Tonight he watched the Tour de France on OLN and Betsy said he had a big grin on his face while he was watching the race.
Our son Jon and his wife Melanie stopped by to visit, and Betsy said Ross watched them very carefully, and again he had a big smile on his face. He seems to be more aware, more involved every day in the world around him.
Betsy said she gave him some tomato juice today and he really liked that. He wasn't as congested today, though he's still got some trouble with sinus problems. At least it's not as bad as it has been.
Ross is managing to do thing doctors said he'd never be able to accomplish. There's no limit to what he'll achieve, but with your continuing support and prayers, nothing is impossible.
July 21, 2004 10:15 PM--Just a brief update to let you know that Ross is doing well. He woke up tired but seemed to come to life once they had him in the car and headed to his doctor's appointment. He appears to really thrive on the mental stimulation of going away from the house, of new surroundings. He did really well at his visit with the neurologist. Betsy said Ross seems to be ready to talk.
Thank you so much for your continuing support and your healing prayers for Ross and his family.
July 20, 2004 9:30 PM--Ross had a pretty good day today, though he was still congested. Betsy said they saw an "ear, nose and throat" doctor who said everything is fine and he was really impressed with how well Ross was doing. He prescribed some "anti-reflux" meds, since that can be a problem with all the sinus drainage Ross is dealing with, and he wants to avoid future problems.
It's been a really busy week and this morning Ross DID NOT want to wake up, but Betsy said they got him up on schedule anyway and he was pretty grumpy. In a way, though, that's good, as he's starting to express how he feels. Cognitively, though, Betsy said he was doing great.
Tomorrow he sees a neurologist and has acupuncture. Also will be visiting an osteopath regarding his spasticity and they'll be checking on the need for surgery to deal with the boney growths in his elbow, a result of his injury.
As Betsy said, they have a wonderful team of physicians working with Ross...as well as an amazing support group. Thank you, all of you, for your support and your healing prayers for Ross and his loved ones.
July 19, 2004 9:45 PM--Ross had a really good day today. He had a visit with the chiropractor and while they were waiting, Betsy put a little "blow up" beach ball on his tray for him to hit. He was bumping it around when the chiropractor came out and watched, then had him put it on the table where he could hit it. The position was wrong for Ross's "frozen" elbow, but he moved it around and adjusted his arm until he could hit it off the table. The chiropractor was definitely impressed because of the thought processes involved in the action.
Ross is also answering questions with the nod of his head and seems to be really trying to communicate. Betsy asked if his problems with speech had to do with the movement of air over his vocal chords, but the doctor seemed to think it was more a problem with his neurons not yet connecting and firing in a normal fashion. The doctor said he needs to do more upper body exercises to help speed his recovery. Betsy said she really appreciates the doctor's advice, as he appears to be very in tune with current discoveries on recovery.
Ross continues to defy the odds. Thank you so much for your continuing support and your prayers and healing thoughts for Ross.
July 18, 2004 8:50 PM--Betsy said Ross is doing really well. He's communicating much better, nodding his head for "yes" and "no" replies and is able to make his needs known. He's trying to speak, but Betsy said it appears to be air control that's holding up his speech. In the meantime, he's looking great, is very alert and cognizant of what is going on around him, feeding himself really well, drinking un-thickened liquids without choking and seems to be feeling great. If he wants something, he's able to make his needs known by looking at the object and he continues to show improvement every day.
His appointment for his Botox injections in his biceps and finger extensors is on August 13. Betsy will have to pick up the Botox and take it with her...because the drug has a very short shelf life and is quite expensive ($500 for a vial) the hospital doesn't keep it in stock.
Please keep Ross in your thoughts and prayers. Thank you so much for your continuing support and your really wonderful notes in Ross's guestbook. They mean so much to Ross and his family, just the knowledge that you are still there, still holding the good thought.
July 14, 2004 9:00 PM--Ross made the trip to Stanford just fine today. They left early, just after 7:00 a.m. Ross wasn't able to get the Botox injections because the hospital doesn't keep the stuff on hand, but he was approved for them and Betsy got a prescription she'll be able to fill and then take back to Stanford when Ross has his next appointment on August 13--sooner, if a cancellation opens one up.
The big concern now is a standing frame. If anyone knows of an agency that might rent them, please let Betsy know, as the owners will be picking up the one Ross is using now, this weekend.
I asked Betsy how Ross did today and she said he did great. He looked the doctor straight in the eye when he was talking to Ross and remained very alert and attentive throughout the visit. He's definitely improved so much over the past few weeks.
I'll update again on Sunday night. Thank you, everyone, for your thoughts and prayers and your support of Ross and his loved ones.
July 13, 2004 8:40 PM--Ross is doing great and feeling much better. When I called a few minutes ago, Betsy said he'd just finished off a full cup of juice through a straw. He also spent an entire hour working on the pedals, the longest he's ever done them, and Jeremiah said Ross really was working hard.
He'd also had an excellent session on the standing frame, an implement he's probably going to lose at the end of the week when the owner reclaims it. Their generosity has been much appreciated...Ross's parents now know for certain just how useful the standing frame is to his rehabilitation. Betsy said they're trying to find a used one they can buy, but they need to replace this one as soon as possible so they don't lose any of the gains Ross has made.
Tomorrow morning Ross goes to the Stanford clinic where the doctor will evaluate him for possible use of Botox to relax the tense muscles in his right arm and hand. It's going to be a very long day, but I'll be sure to have an update by evening. Please keep the good thought for Ross and his family and keep all of them in your thoughts and prayers.
July 12, 2004 9:45 PM--Ross is feeling a lot better today, which is a good thing as he had a really busy day. Betsy took him to the chiropractor and then to the speech pathologist, and from their to the neurologist's office to have prescription refilled. Betsy said Ross looks good and is really alert, he's able to hold himself in position in the car without having his legs strapped down, and he's swallowing well. He also let his mom brush his teeth thoroughly, though she said she had to bribe him with quarters! At least it worked!
Betsy said he's looking amazingly well and is very alert and aware of what it going on around him all the time. He's definitely showing a lot of improvement.
Thank you, everyone, for your prayers and healing thoughts and your wonderful notes to Ross's guestbook. You have been an amazing source of inspiration.
July 11, 2004 9:00 PM--Betsy said Ross has had sort of an "up and down" few days. He was feeling better and then she made him some goat's milk yogurt, culturing it for 30 hours so it should have been fine, but it really upset his stomach again. She's decided all dairy is out for now. At least the visit to the hand surgery clinic at Stanford went well. It was a long day. They had to leave at 10:00 a.m. in order to make a 1:00 p.m. appointment, so Ross was pretty tense and tired by the time the doctor saw him. The doctor said surgery is a last resort, so he's referred Ross to another physician who uses Botox to relax the muscles that cause the tension. Ross might be a candidate for Botox shots for his shoulder, arm and hand, but Betsy said they won't find out until his appointment on Wednesday. That one is at 10:00 a.m. which means they'll need to leave at 7:00. It makes for a very long day.
In spite of his discomfort and stomach upsets, Ross has had some terrific sessions on the standing frame, which is why it's imperative that the Dillons find one as soon as possible in order to continue the work on it. Overall, Ross continues to be more alert and capable of doing more for himself. He's drinking out of a cup much better and Betsy said they are no longer adding any thickener to his liquids. They're making Ross answer "yes" and "no" questions with a shake of his head and working at including him in as much as possible. He continues to respond better and also to move his right arm more, as if he's trying to reach for things, and Betsy said his level of alertness increases each day.
Thank you so much for your continued support and your healing thoughts and prayers.
July 7, 2004--Ross is feeling better and Betsy thinks the changed diet is helping. He had his best standing frame session ever today and was able to shift his weight from one foot to the other, which is definitely a precursor to walking. He also seems even more alert than usual.
Tomorrow is the trip to Stanford to the "hand" clinic to see if they can do anything to increase the functionality of Ross's right hand. I will report back on Sunday night to let you know how the appointment goes, but have to be away this weekend.
Please keep Ross in your thoughts and prayers, especially on the long drive tomorrow. This is another important step in his recovery.
July 6, 2004--Betsy said Ross seemed to be feeling better today, and so far he's adapting to his new diet, even though his favorite foods aren't on the list. Betsy's making a lot of new recipes. She said the diet definitely takes away all the goodies, but it's worth it if Ross starts to feel better. She's looking for a source of goat's milk so she can make yogurt. I was teasing her about raising her own goats.
Today Betsy bought Ross some sandals and said she brought them home and tried slipping them on his feet without saying anything. He didn't like it a bit and kept moving his feet away. So, Betsy asked if she could put the sandals on him and he nodded his head in the affirmative and let her try them on him. Obviously, Ross is growing more aware every day of what is going on around him and what people are doing to him. Definitely a good sign.
His physical therapist also said today was the best session Ross has had yet in the standing frame. He was able to move about, adjust his weight and balance himself much better than he's done before.
He has his appointment with the Stanford Hand Clinic on Thursday. Please hold the good thought for Ross, keep him and his loved ones in your thoughts and prayers.
July 5, 2004--Betsy sent the following note for an update: "Ross is okay. He has been tired, jerking and toney in his limbs. We have also been dealing with intestinal distress. However on Saturday and Sunday, it became more troublesome. He also had a petit mal seizure lasting about 3 minutes on Saturday evening that was very different from other seizures. Ross was alert during the whole time and it seemed to only involve his mouth and at the end, his eyes started flickering.
"I have put him back on the Carbohydrate Specific Diet, and in rereading the CSD, it seems that all of the above symptoms could be related to his distressed intestinal tract. The diet means no grains, no sugars except honey, no chocolate, no soy, and no potatoes of any kind, plus no starch fillers like tapioca, agar, etc. I think the problem may have started with the increased dosage of Keppra and then has gotten worse. So far today, he seems to be feeling better. Through all this, he seems more here with us and cognitively interactive. We are insisting that he respond to our questions. He also seems to be getting annoyed when we do something without asking him first. All great signs of continued improvement."
When I talked to Betsy this afternoon, she described Ross's "cognitive interaction" as the ability to follow instructions much better than in the past. For instance, when he moves his foot off the foot rest of his wheelchair and she needs for him to put it back to wheel him through doorways, Betsy said she just has to tell Ross to put his foot back on the rest and he does it. She did say his awareness comes with a price, as he definitely appears to be sad.
Thank you so much for your continuing support, your kind thoughts and healing prayers for Ross's eventual recovery.
June 30, 2004 9:20 PM--There is definitely something in the air that's causing a lot of congestion for Ross. Betsy said he seemed really tired today, which is typical when he's having trouble with allergies. Still, he continues to work hard at kicking the ball, working with a pencil and paper (it has a large rubber grip to make it easier for him to hold) and using a game of pegs the occupational therapist brought for him. Betsy said Ross shows a lot of interest in things he can do that require movement and coordination. He's also getting better at communicating his needs, though he's not speaking out loud yet.
Hopefully the air will be clearer and he'll be able to breathe easier. In the meantime, thank you all for your thoughts and prayers, and your wonderful perseverance during Ross's long recovery.
June 29, 2004 9:30 PM--Betsy said Ross was tired today and still really congested. We've had a lot of wind and the air is definitely dirty--there's a brown haze over all the valleys and I'm sure that's got to be affecting his allergies. Ross had a chiropractic visit this afternoon. While he was waiting for his appointment, Jeremiah took Ross's dark glasses off and set them on a table nearby. Ross made a definite movement as if to reach for them. He did the same thing later when Jeremiah moved the glasses, as if he was really concerned about where they were being left!
He's showing more control of his hands and feet all the time, is more alert and aware of his surroundings, and seems to be engaged in what is happening around him. He's been moving his right leg in a very purposeful manner, as if he's exercising it and testing the amount of control he has over his muscles.
It's such a terribly difficult struggle, over two years post-accident, but Ross continues to defy the odds by showing constant progress and improvement. Thank you so much for your prayers and healing thoughts and your unwavering support. You are more important to his recovery than you can possibly imagine.
June 27, 2004 8:40 PM--First of all, my apologies for such a long period between updates, but I'm working out of the area for part of each week and unable to access the website to post updates. I just got off the phone with Betsy and Ross continues to show improvement on a daily basis. One of the steps towards speech is the ability to force air out over the vocal chords. Betsy tried giving Ross a small party favor, the kind where you blow into it and make the milar streamers move. She said he understood what she was trying to get him to do and worked really hard at exhaling with enough force to move the streamers until he could do it. Not only does it show that he's capable of the action, but also that cognitively, he understands the instructions.
Ross has an appointment coming up in early July with the Stanford hand clinic to work on his right hand, which wants to roll up in a tight ball. Betsy said she was able to spread his fingers out and get them into a splint, but hopes the clinic will be able to use Botox injections to relax the muscles enough that Ross can finally get his hand straightened out. He's also going to need surgery on his elbow to remove the calcium deposits and bony growths that are a result of his original accident.
(note from Betsy: Small point about Ross's hand. When Ross came home a year ago, the issue was to keep his hand from being contracted into a ball or fist. Now, his hand has relaxed considerably except for the mp joint of the 2nd and 3rd digits of the right hand. That is what I was able to extend last weekend, and we are hoping that Botox injections would relax those two digits so we can splint it in a functional position.)
Ross is beginning to enjoy every bit of independence he's mastered. Yesterday when his nurse was trying to feed him, he was really unhappy with the process, even though it was late in the day after a lot of hard work and everyone thought he might be too tired to do it for himself. Once he had the spoon in his hand, he was fine. He wants to do whatever he can for himself.
Betsy said he continues to have great sessions in the standing frame and is doing better each day. They're almost all small steps, but very important to his final recovery. Your support is an amazing source of strength to Ross and his entire family. Thank you so much for your prayers and healing thoughts.
June 23, 2004 8:30 PM--Joanna is a physical therapist who works with Ross. Her services are paid for by his insurance policy. In order to continue working with him, she must be re-certified every two months, which requires setting goals and meeting them within a particular time frame. Joanna is the one who suggested Ross have a standing frame and today was the first day for her to work with him while using it. They put Ross in the standing frame and he was bearing his own weight and shifting his feet to balance himself. Joanna was absolutely amazed--those two actions met her goals for Ross for the entire two month period yet to come! She has told Betsy and Rusty that Ross's improvements, so long "post accident," are practically unheard of.
He continues to improve at an amazing rate. Later in the day, Lisa put him on the mat for exercises. She set the ball up so he could kick it, but he actually was reaching for it with his right arm. Ross's elbow is still frozen because of a bony overgrowth from his accident, but Betsy said Ross spent almost an hour reaching for the ball and trying to hit it with a toy sword. As Jeremy, another of his PTs said, you have to set up the proper environment, and the rest is up to Ross. Obviously, he has no intention of quitting.
Thank goodness you haven't either. Thank you, everyone, for your continuing support, your healing thoughts and prayers for Ross's continuing recovery.
June 22, 2004 10:00 PM--When I called tonight, Betsy said it was Rusty's birthday and Ariel was cooking a special dinner. Ross had a really good day--Jeremy was there for the first time since Ross had gotten the standing frame, and was able to show them all a few things about using it. Ross still needs some special splints for his legs in order to use it properly, but he's doing great.
Betsy said he's been really good about opening his mouth wide for her to brush his teeth. He used to fight it until she tried bribing him...now we know he can be bought! Betsy said she tells him she'll pay him if he'll open his mouth wide and he does it every time.
Ross is able to do so many things now that he couldn't just a few weeks ago. His improvement continues, with much thanks to all of you and your healing thoughts and prayers. Thank you.
June 21, 2004 9:40 PM--Betsy said today was really busy, with a visit to the chiropractic neurologist and the speech therapist. Rusty has some time off this week, so he was able to go with them, and it's the first time in awhile that he's driven the car with Ross as a passenger. Betsy said he was really surprised at how much better Ross is doing riding and holding his body steady and his head up.
He did really well with the speech therapist and was able to stick his tongue out well beyond his lips. The next step is to learn to blow air out of his mouth, which takes him a step closer to speech. Betsy said he's definitely trying to talk, moving his mouth and tongue, but still has a way to go.
They continue to learn all the ins and outs of the standing frame, but Ross is doing really well in it. His improvement is steady and across the board in just about everything they've worked on with him. Thank you so much for your thoughts and prayers and your continuing support.
June 20, 2004 8:30 PM--Betsy emailed an update for the site:
Ross is doing well. He has been coughing a lot today, but it seems productive.
We have a standing frame-it is wonderful and exactly what we need. We put Ross into it yesterday, asked him to lift his head and he stood up right with his head raised. All of that work on the tilt table and the edge of the bed has prepared him. They used to put him in the standing frame at Kentfield and he could only stand with lots of support. This was completely different. Our heartfelt thanks to Marti who referred us to Dennis and Cathy. Thank you so much.
Betsy said she couldn't get over the difference in Ross's abilities since the last time he was in a standing frame while at Kentfield, where it took two men behind him to help hold him up, and Betsy in front holding his feet in place. Today when he was in the frame, she asked him to hold his head up and he straightened his entire body on his own. He's definitely showing a lot of improvement.
Thank you, everyone, for your kindness and generosity, your healing thoughts and prayers for Ross's recovery.
June 17, 2004 9:00 PM--Ross is smiling a lot more now. Betsy said it's definitely a response to what's going on around him or what people say to him. He started a few days ago and it's become a regular thing now. He's very close to talking. Even the neologist he sees believes it won't be long. It's like Ross is just teetering on the edge of so many things. He's more involved in what's going on around him, participating more, helping more, for instance, when he's being transferred from his bed to his wheelchair. I keep getting this image of all his brain cells that were so badly injured slowly reconnecting, of neurons firing and stuff finally connecting and making sense for him. Now, more than ever, Ross needs your prayers and healing thoughts. Thank you all so much for your continuing support.
June 16, 2004 9:00 PM--I just talked to Betsy and got a short update. She's got a house full of guests--it's Ariel's birthday and a group of her friends are there, as well as Ross's friends Adam, Ashley, Jon and Mel on their way back from Santa Barbara and Ashley's college graduation. Betsy said they're really enjoying the crowd and all the activity and energy, and Ross is especially alert and aware with his friends there.
Betsy was telling me that the physical therapist whose services are covered by insurance told Betsy that when she turned in her report, her supervisor questioned the amount of improvement she noted Ross was showing in the current billing period. His abilities are really surprising everyone now and he appears to be improving in bigger steps than ever before.
As Betsy said, there's something different about him, especially in the past two days, as if he's more focused and aware of the world around him. It's an exciting and very hopeful time, and so gratifying, to know that even now, two years "post accident," Ross is still recovering at a rate that is really noticeable.
June 15, 2004 9:30 PM--It was a really busy day today. Betsy said they had to wake Ross up for physical therapy this morning, which lasted from 9-10:00. He had a great session, then Betsy's friend Patricia gave him a good hand massage before the occupational therapist came to work with him from 10-11:00. He spent that hour holding a pencil, making circles and moving hi s hand around. After lunch Betsy said he got about a half hour nap, then they were off to the acupuncturist, which took up the rest of the afternoon. When I called tonight, the family was out on the deck enjoying the last of the evening and hoping the mosquitoes wouldn't find them. Rusty said Ross was moving his leg around and generally keeping busy. He may have had a petit mal seizure this evening. Betsy said he stared into the distance for a bit, a sign of a small seizure, but she really wasn't sure. Possibly he's just discovering new connections as his mind heals.
Ross had a visitor tonight, a gentleman from Brazil who had heard about Ross through one of Ross's physical therapists. Betsy said they thoroughly enjoyed the visit and Ross was particularly alert and aware tonight. As busy as his day was, she said he was very focused and just seemed to have it all "more together." Ross continues to show improvement on a daily basis. It's a long journey, but one that continues.
Dr. Ed Cooper sent me a website about a young couple injured in a car accident in Utah. <www.tarajosh.com> From their site, I found another that deals with brain injury. It's absolutely riveting to read the letters written by brain injured patients who have recovered from the worst of their injuries. You can access the site at www.waiting.com . It's filled with the kind of information I wish Betsy and Rusty could have accessed when Ross was first hurt. There is so much you don't know when a loved one is badly injured, things that could make the outcome so different. I was really impressed with the wealth of information on the site.
Please continue to keep Ross and his loved ones in your thoughts and prayers.
June 14, 2004 8:20 PM--Got an email update from Betsy so will post that. I imagine she's heading for bed early tonight after a long and busy day. I can't imagine the effort she puts out every day in caring for Ross...it's got to be so exhausting, even when there is help available, which isn't all the time. Here's Betsy's note:
Kate,
It has been a long day, so I am sending the update before I become incoherent. Ross was awake until almost 1 AM last night. As a result, he has been tired today. He is also very congested. Speech therapy went great today. The speech pathologist was excited about the progress he has made in one week, and she told Ross that such great progress in one week was very unusual. Even though he was tired, he worked very hard and was exhausted at the end of the session.
He had a nice nap when we came home, pedaled for a while, had dinner and is now getting a hand massage from our dear friend Patricia. He is really responding to requests and is very attentive.
Betsy
As always, please remember Ross and his loved ones in your thoughts and prayers. Thank you so much for your support.
June 13, 2004 9:00 PM--Just talked to Betsy and she said Ross is doing well, though he was a little tired tonight. They're increasing one of his anti-seizure meds (Kepra) which could be causing it. He continues to improve and is looking really good and responding well to commands and questions with "yes/no" nods of his head.
Ross continues to defy the odds. He is improving, albeit slowly, but whatever steps he takes are not forgotten, and they're available for him to build on. Thank you, all of you, for your prayers, your healing thoughts and your stubborness...sometimes I think that a stubborn belief that everything will work out is the most important human characteristic we share. The cool thing about it is, it's often the right approach. Ross continues to improve. We believe he will recover...ergo, it's going to happen, sooner than later! Thank you!
June 9, 2004 9:30 PM--Ross had another good day that included a visit from the physical therapist who does the required evaluation for Ross's insurance coverage recertification. She was very impressed with his achievements and said it was obvious what he's doing is volitional, not reflex. Ross was able to roll over and back on the mat and also feed himself. As his dad said, right now, for Ross, it's all about the food! He is able to stick his tongue out to lick his lips and is eating "chunkier" foods, things he couldn't do even a couple of weeks ago. He's definitely more alert and improving all the time.
June 8, 2004 9:00 PM--Betsy said Ross is doing well. He's showing more alertness, which is really wonderful. Even the doctor he saw today noticed it. He's obviously trying to do more things, especially trying to talk, and he's handling travel really well to and from the various appointments Betsy has to take him to. She said he does appear to be more solemn. Today Betsy was massaging his hand and she said he got a very quizzical expression on his face, as if he doesn't quite understand what's going on.
Please keep Ross in your thoughts and prayers as he continues this long journey of recovery. He's taking many small steps, but they're all cumulative and leading him toward a much larger goal.
June 7. 2004 9:20 PM--Just talked to Betsy and she said Ross had a terrific day. The biggest thing was the fact he was able to stick his tongue out beyond his teeth for the first time, an important precursor to speech. He licked his lips more than once while eating. He also had a doctor's appointment, and the doctor was very pleased with his ability to drink through a straw and to swallow. She told Betsy someone should write up Ross's progress for a medical journal, because common belief for brain injured patients is that most recovery occurs within the first six months. The fact that Ross is still showing improvement two years post injury is nothing short of phenomenal.
Betsy said Ross is a good example that conventional wisdom isn't always true. So long as the patient continues to receive therapy and mental stimulation, they can show improvement. Unfortunately, the way our Medi-cal system is set up, if a patient is on Medi-cal, the family is not allowed to provide any outside paid therapy or they lose their benefits. This essentially dooms the patient to a warehouse type existence and no hope of recovery. As Betsy said, they are so thankful they've got Ross at home where they can offer him the care and therapy he needs to recover.
When Jeremiah got Ross up from his nap and started working with him on the pedals, Ross started to laugh. He kept that up for a good five minutes. Betsy said it sounded really beautiful to hear him laugh, but she can't help but wonder how he would be doing now if he hadn't had to deal with the hydrocephalus for so long before he finally received appropriate treatment, or if he hadn't had to undergo the later surgery to repair injuries that went undiscovered for far too long. Still, in spite of the setbacks he's faced over the past two years, Ross continues to surprise everyone with his determination and strength. He's already come so far. Today, Betsy said that he seemed particularly alert and she told him he'd been in an accident and badly hurt, that much of his body was still relearning to work. She said he started watching his feet and moving them, as if he was listening to her explanation and testing to see what functioned.
Ross is doing so well, but we all know he's going to do even better. Thank you, everyone, for your continuing prayers and healing thoughts.
June 6, 2004 9:15 PM--My last update was on June 3, the second anniversary of Ross's accident. It's been a long two years, but in many ways it feels as if it's passed in the space of a heart beat. Tonight Betsy said Ross is doing well, though he's really bothered by a lot of congestion from allergies. She said they are seeing a lot of improvement in his right hand and arm--his right side is definitely the strongest. They're working on transferring him from the wheelchair to the shower chair with Ross assisting--he's able to place his full weight on his right foot and is clearly helping during the transfer. He's also getting a lot better at giving "yes" and "no" responses by nodding his head. He's not speaking yet, but Betsy said it's obvious he's trying.
The big need now is for a "standing frame." It will allow therapists to work with Ross in an effort to aid him in walking. He's gaining strength in his legs on a daily basis, working the pedals of his stationary bike. Betsy said he's pedaling almost entirely on his own now without assistance.
He's come a long way in two years. He has a lot farther to go, but thanks to your prayers, your healing thoughts and your support, Ross isn't in this struggle by himself. Thank you so much for being a part of his team.
December 26, 2004 9:00 PM--Ross had a really nice Christmas and is doing well tonight, though he's still quite congested. Betsy said she squeezed some lemon juice into water and added a little sugar for him, but it was obvious the lemon hurt his throat.
He spent quite a bit of time in his recliner. Betsy said it's just great, as it's fully adjustable so they can really make him comfortable, and it allows him to sit in comfort and be with the family.
He's also moving around more and is very alert and responsive. As an example, Betsy said she watched him at the table during Christmas dinner last night--he was eating prime rib, peas, salad, potatoes--feeding himself and chewing and swallowing without any problem. If you'll recall, it was just a year ago at Thanksgiving that Betsy had to forego giving him pumpkin pie because she didn't think he'd be able to handle food that solid.
Betsy said she's also noticed that Ross is hungrier than usual, and he's lost some weight, most likely due to his increased activity and the obvious healing that is taking place. They're working on adjusting his caloric intake and providing him with more food.
Betsy said her hope is that by this time next year, Ross will be talking and able to do standing turns from one place to another, which will make traveling with him much easier.
I hope all of you had a wonderful--and safe--Christmas. I will probably not be updating again until the first of the year, due to family commitments. On a personal note, I want to thank the Dillon family for allowing me into their lives each time I call. Watching Ross's progress over the last two and a half years has been a most amazing experience and I consider it a privilege to have the opportunity to bring his wonderful story to so many people.
I want to wish all of you a very happy and safe new year.
Kate
December 24, 2004 11:00 PM--Note from Betsy:
Merry Christmas,
I thought I would send a note to go with Ross's picture. Ross helped me fill stockings and then we celebrated Christmas Eve with our own worship service. Ross was obviously touched by it. I also asked him if he wanted some of the fruit cake we always make and he nodded yes. He ate twice as much as I anticipated and he loved it. Again, he nodded yes to the cake and often shook his head about the tea which I kept offering him.
More later.
Betsy
December 23, 2004 10:00 PM--Betsy said Ross seemed fairly tired and quiet today, but thanks to his new chair he can still be with the family when he's resting, something he can't comfortably do in his wheelchair. However, in spite of his slower start this morning, he had a terrific session in the standing frame. Steve, the physical therapist, brought some "chocolate decadence" for Ross. Betsy said they were giving Ross pieces of the rich dessert, followed by drinks of water to wash is down. After a bit, Ross was nodding "no" to the water and "yes" to the dessert. Even after he finished the last piece, he was looking around for more. It was obvious he really loved it.
He continued to do well in the standing frame, knocking the cones off as quickly as they could be set up, and doing it according to color. Betsy said he did really well.
She also said the splint for his left foot has worked so well, the therapist suggested using it on his right. Luckily, the splint is adaptable for either foot.
I will be really busy with family over the weekend and may not get back to updates until Sunday. Please have a safe and enjoyable holiday weekend. Thank you all so much for your healing prayers and thoughts, and your continuing support of Ross and his loved ones.
December 22, 2004 9:15 PM--Ross really isn't an early morning person, but he was on the road to Stanford early this morning for a follow-up visit with the doctor who prescribed his Botox injections. The doctor noticed Ross was more alert and Ross was able to move his arm in all directions to show what he can do. The doctor put in a request for more Botox, and Betsy said they may also be able to get surgery scheduled for Ross's elbow.
Today Betsy was reading a Christmas letter from an old friend, someone who writes a lengthy, very funny note each year. She said Ross was laughing at the contents of the message, so it's obvious he's totally aware of what people are saying and what's going on around him.
Thank you so much for your prayers and healing thoughts for Ross and his family. Our thoughts are with you all for a safe and happy holiday.
December 20, 2004 9:00 PM--Ross had another restless night and was awake from 2:00 a.m until 7:00 this morning. He got some sleep during the day and was awake tonight when I called for the update. In spite of his sleepless nights, he's showing amazing improvement on a daily basis. Betsy said he's becoming more "outspoken" about his wants now. When Jeremiah, his caretaker, asked Ross if he wanted to work on the pedals, Ross shook his head no, but when Jeremiah suggested working on the mat, Ross nodded an emphatic "yes." He's eating really well--finished a huge enchilada for dinner tonight and Betsy said he might have eaten more if she'd offered it.
For those of you who are traveling for the holidays, please be safe. Thank you, everyone, for your thoughts and prayers, and your amazing support of Ross and his loved ones.
December 19, 2004 9:15 PM--I just talked to Betsy and she said Ross has been sleeping better at night until LAST night when he woke up at 3:00 a.m. When I called a little bit ago, he was still awake and had been ever since the middle of the night, but before we were off the phone he was sound asleep in his new chair. The chair has quickly become very popular!
One of Ross's therapists said he really needed a rocking chair as it would help with vestibular integration (The vestibular system is responsible for keeping your body upright and responding to the forces of gravity) so Betsy and Rusty went shopping for a rocker this weekend. Thanks to money from donations, they were able to buy a cushioned rocker that also reclines. When they first mentioned it to Ross, his response was negative, but once he got a chance to sit in it and rock, and also to nap while reclining, his attitude made a complete 180! Betsy said he can rock it himself and is really comfortable in the chair. The best thing is, it makes for a much more normal life for Ross.
A couple of other things to tell you: Betsy said she has been asking Ross questions and showing him pictures. She was surprised that he is totally unable to relate to himself as a little boy. When he sees the pictures of his sister, he has no problem "seeing" Ariel as a child as compared to Ariel as an adult, but he doesn't recognize himself.
Another point of interest is that Betsy has been asking him questions as part of his cognitive exercises. One question, for instance: Are you thin? He is unable to answer at this point...he really doesn't know if he's thin or not.
On a more positive note, Ross has suffered from low-grade anemia for many months, in spite of a diet high in protein and red meats. However, on his most recent blood test, he is once more back to normal. The only change in his diet is the "sugars" Betsy is giving him as a supplement--they're monosaccharids, which are building blocks for the brain.
Ross's growth is absolutely fascinating as he progresses from stage to stage in his development. He's already reached points of growth his doctors never expected, and yet he continues to do even more and progress even faster. Thank you, all of you, for your prayers and healing thoughts as well as your monetary donations which allow his parents to continue with the therapy and materials that are making such a difference in Ross's life. He wouldn't be anywhere near this far along without your help.
December 15, 2004 10:20 PM--Got an email update from Betsy tonight so will post that:
"Ross was awake from 1 AM until about 1:30 PM. He had an appointment with our wonderful chiropractic neurologist and after lunch he fell asleep. He awakened for a bath, fell asleep , then awakened for 12 bites of food, and is asleep again.
"Both the nurse, who had not seen him for five days, and the doctor remarked on his improvement in the last week. He is trying to speak, and is expressing more complex feelings."
I'll be back in town on Sunday and will have more to report then. Thank you all so much for your support, your prayers and your healing thoughts, especially now, during the busy holiday season.
December 14, 2004 10:00 PM--Ross had another sleepy day, though he woke up alert and ready to go this morning. Started out with physical therapy in the morning, including a session in the standing frame. The PT had him knocking colored cones off the tray according to color. Betsy said this time Ross waited for the therapist to line them up instead of trying to knock them over right away.
He also saw the doctor today for acupuncture. Betsy explained that Ross has been really congested and the doctor said he could be developing a food allergy. However, he did give Betsy an herbal tincture that might help ease Ross's congestion. Ross also had some blood tests done to check levels of medications in his system as well as sodium and mineral levels. Betsy said they're looking for a reason he's sleeping so much, though they realize it could be a sign of healing. Just as a baby might sleep for extended periods before a growth spurt, Ross's need to sleep might signal new neural connections or some other healing going on within his body. It's so hard to know until something actually happens! Anyway, after his doctor's visit, Ross slept all afternoon. He was awake when I called tonight, though, and trying to get Josie (the family dog) to pay attention.
Please remember Ross and his loved ones in your thoughts and prayers. Thank you so much for your continuing support.
December 13, 2004 10:00 PM--Had the house full of grandkids tonight, so I was really pleased Betsy was able to send an update:
Kate,
I know it is family night and you are probably very tired-I certainly am and I am going to bed. Ross continues to be very tired and sleepy. He had a small petit mal seizure around 1 AM last night, but seemed to be alert afterward. He had fallen asleep at eleven, slept one-half hour, then awake off and on until four. He is still very congested, and has slept most of the day. We have an appointment with the neurologist tomorrow and I am going to suggest blood tests. I think that this is another one of those resting phases before the next big step forward, but it is worrisome. Will you be at home tomorrow night?
I'll be here tomorrow night and will talk to Betsy for a new update then. Thank you all, so much, for your healing prayers, your thoughts and your unwavering support of Ross and his loved ones.
December 12, 2004 8:30 PM--I just got off the phone with Betsy. She said Ross wasn't sleeping well last week so she finally gave him some meds to help, and he responded well. Slept most of yesterday and a lot today, but when Betsy asked if he might be sick, Ross nodded yes, so it could be he's had some sort of bug that's been bothering him. He's definitely congested, but not running any fever.
On the good side, he's been terrific about responding to questions. He also ate a really good dininer tonight. This morning, when he woke up he was able to raise his left leg all the way to his chest. His left side definitely appears to be "waking up." When Rusty went in to see Ross this morning, Ross raised his left hand and touched Rusty's face with his finger.
However, on the down side, Betsy said he's had at least three petit mal seizures, so minor as to be barely discernible but obvious if you know what to look for. However, when Ross is focused, he's REALLY focused, and Betsy said he is beginning to seem more like his old self.
Friday she and Ariel went Christmas shopping and were gone most of the day. When they got home, Jeremiah had just bathed Ross and gotten him settled. Betsy went in to see him, and he wouldn't look at her. Betsy asked if he was upset with her, but he still wouldn't look. Finally she asked if he'd missed her while she was out with Ariel. He still wouldn't look but he did start to grin. Betsy said it reminded her of the way Ross used to tease her.
For those of you who are interested in the financial commitment of keeping Ross at home, please read the latest update letter. It's posted here. Thank you all so much for your healing thoughts and prayers as well as for your unwavering support of Ross and his loved ones.
December 8, 2004 9:30 PM--Just a brief update to let you know that Ross is doing well in spite of a lot of congestion. Betsy said he woke up laughing and smiled a lot when Christmas carols were playing. It was a good day with Ross's typically full schedule. The amount of work his therapists, caretaker and family do each and every day is amazing, but it's all part of helping him recover from his devastating injuries.It's been over two and a half years now since Ross was hurt, and he's probably worked harder in the past few months than he ever did before, even when he trained to race. It's paying off with each new skill and every small step forward, but he can't do it by himself. Please remember Ross and his loved ones in your thoughts and prayers.
December 7, 2004 8:40 PM--Today Ross had a pencil in his hand and Betsy was helping him to write his name. Later, on his own, he was "writing his name" just above the paper. He's still having trouble connecting pencil to paper on his own, but he obviously has the concept. Betsy said his eyes seem to bother him, though they're definitely tracking together now. However, she doesn't feel he would benefit from an eye exam at this point, at least not until he's able to make more definitive answers to the questions an optomitrist would ask.
Another thing Betsy mentioned is that she's noticed Ross doesn't like it at all when she talks about his time in the hospital. She was discussing his early treatment with the therapist today and said Ross was very angry about it...she could tell because he wouldn't look at her or answer her when she asked him if he was upset.
Rusty got on the phone and talked about Ross's work on the mat. He's able to really roll himself around now. When he's way over on his left side, he can flip himself quickly to his back. It happens so fast, Rusty said he actually looks surprised! However, it's also very clear he's enjoying the activity and the fact he's finally mastered another skill.
They've been putting him in the standing frame a lot and Ross is able to stand fully erect, then rock and rotate around without losing his balance. He's showing a lot of control, which was obvious at another time today when Betsy decided to help him sit up straighter. She said she usually can't move him because Ross is so big, but this time he moved easily with a bit of help from her. His trunk strength and control are definitely improving.
Rusty said they also put him in the walking sling again today. It's supported by the Hoyer lift and he's held by a web that allows a lot of movement. Ross stands as upright as he wants and is using his left leg, which used to be relatively useless, as his support leg. He braces himself with it, and today was busy kicking the soccer ball with his right foot. His left leg no longer turns in like it used to.
His right arm is still drawn up, but that's due to the elbow injury. Still no final word on the surgery, though he does have an appointment at Stanford on the 22nd.
As Rusty said, it's amazing to see all the steps Ross is taking. His improvements are happening on a daily basis, with his mastering of new skills keeping his therapists busy thinking up new exercises for him. It's pretty amazing, so long "post-accident," to see him continue to improve at an even faster rate than before.
Thank you, everyone, for your thoughts and prayers, your continuing support and the wonderful notes you've sent to Ross and his family.
December 6, 2004 8:45 PM--Ross was tired today and Betsy said he seemed kind of sad, but that is to be expected as he improves and becomes more cognizant of his condition. However, both the chiropractor and speech therapist who saw him today were quite pleased with his progress.
Betsy said Ross's ability to eat and chew regular foods is improving. She fixed him braised lamb and sliced carrots and he had no trouble at all eating them. They're still using the chocolate sauce to get him to use his tongue. Betsy said they put it on his upper or lower lip and he licks it off, which seems like a simple enough chore, but up until a couple months ago, Ross was unable to extend his tongue beyond his teeth. Moving his tongue freely is an important part of speech, so each little step brings him closer to verbal communication.
They've added a third card to Ross's "yes/no" cards: "Ask me another question." Betsy said he's used it.
He's still knocking cones off the tray according to color, and they worked with the kickball again today. His coordination continues to improve.
Betsy said they also got him into a "walking sling" on Saturday, which consistes of a sling attached to the Hoyer lift they use to get him in and out of the bath. The sling supports him just enough to keep from falling but allows his feet to rest on the floor. Betsy said it's really difficult for him to balance himself, but he did beautifully. However, she also said she thinks that's why he was so tired today.
Please keep Ross and his family in your thoughts and prayers. Thank you all so much for your continuing support.
December 5, 2004 10:45 PM--When I called Betsy tonight she said a lot had been happening, and after talking with her I have to agree! For instance, Saturday morning when she was making Ross's breakfast, he paid attention to her instead of his dad, who was trying to work on some therapy with him. Rusty turned Ross's wheelchair around so he'd have to concentrate on the business at hand, not on what was coming up for breakfast. Ross used his foot to back the wheelchair up and turn it around so he could go back to watching what was really interesting!
On Thursday, Corinne, the physical therapist was working with Ross. She put the colored cones up on his standing frame tray and asked him to knock them off by specific color, which he did. He repeated the exercise later while in his chair. He's also been batting helium baloons around, using a cardboard tube (the kind that comes off of a coathanger). He used the tube to knock cones off as well.
Another episode in the standing frame occurred when he'd had an excellent session, standing very straight, leaning from side to side and catching his balance without assistance, but after fifty minutes he was getting tired. Betsy said Ross reached out and pushed the release lever forward which drops him back into his chair. Unfortunately, his chair wasn't in position so they had to stop the release until they could get his chair placed under him. After Ross was down and settled, they played soccer, moving a ball back and forth with their feet. Ross would kick sideways to Jeremiah and forward to Corinne, and Betsy said it was obvious he was thinking through the moves.
He continues working with many of the same skills he's developed over the past months, fine tuning them and growing stronger and more proficient. Speech still eludes Ross, but Betsy said it's just a matter of time. I can't wait to know what he has to say...and I imagine it will make his therapy even more efficient once he can speak and let his therapists know exactly what he needs.
Please continue to remember Ross and his loved ones in your thoughts and prayers. He's come so far, and though he still has far to go in this recovery, his baby steps are growing larger and longer every day. It's really exciting to talk to Betsy when I call for updates, because every time we speak there is something new to report. Thank you so much for your continuing support and healing thoughts.
December 1, 2004 10:15 PM--Just a quick update to let you know that Ross had a great day, including a visit to see his neurologist. Betsy said the doctor was amazed by Ross's improvement, and seemed surprised at how attentive he was. As they were leaving, Betsy said the doctor looked closely at Ross and said, "Ross, you are getting better."
Considering the fact none of Ross's doctors, in the beginning, held out much hope for him, it's pretty amazing to see how well he is doing, and it's truly gratifying to have the physicians noticing. It's been a lot of work and will continue to be hard work, but Ross is definitely getting better.
Please keep Ross and his loved ones in your thoughts and prayers this holiday season.
November 30, 2004 9:10 PM--I just talked to Betsy and she said Ross is doing really well tonight. He had just finished a session on the floor mat with his physical therapist and was really limber. Betsy said Jeremiah had worked with him on the mat a couple of times during the day, and it really showed in tonight's session with the therapist.
Betsy said they've discovered that Ross is almost always in pain from his elbow injury. The elbow was badly broken when he was originally injured and the subsequent calcification and bony growth has gotten worse. With Ross's increasing ability to communicate with nods and gestures, he has been able to let them know how painful it is. Betsy is hoping they can get him scheduled for corrective surgery to repair the damage and help alleviate the pain.
Ross surprised his folks with a new move tonight. After having his teeth brushed, he flashed a smile to show them off to his dad, then stuck out his tongue...both are movements he couldn't have done a few months ago. Then he puckered up his lower lip, as if making a face. Betsy remembers him doing the same thing when he was younger, but this is the first time he's been able to do it since he was hurt.
Just a small thing, but another step forward, and they all add up...just as the donations add up when folks work together. David Carr of Napa Valley Velo contacted Rusty today to let him know that the benefit cyclocross race at Infineon Raceway raised $1000, an absolutely awesome donation. Our heartfelt thanks to Napa Valley Velo and the Infineon Raceway Cycling Team.
Thanks too to all of you for your support, your healing prayers and your kindness. Ross's recovery is a long, slow process, but he continues to show improvement well beyond many of his physicians' expectation. Thank goodness his friends and family have always believed in him.
November 29, 2004 9:30 PM--A belated Happy Thanksgiving to all of you. I was away for the holiday and just back to catch up with Ross's mom for an update. There were twenty-five people at the Dillon table for Thanksgiving, and Betsy said Ross enjoyed every minute. He ate everything--last year at this time they were hoping he could tast pumpkin pie, but he wasn't able to do it. This year he ate turkey, dressing, potatoes, stuffing, yams, salad, pie and coffee. Betsy said he was eyeballing someone's wine so she gave him some non-alcoholic wine...with all the meds he's taking, alcohol might not be a good idea! Ross had a great time and the difference from last year to this is absolutely amazing.
On Saturday Ross went to Infineon for the bike races, but Betsy said it was really hard for him. When she asked Ross if it made him sad, he nodded yes. It's got to be tough, now that he's probably remembering what he used to do.
Over the weekend they decorated their Christmas tree, and today Ross saw the chiropractic neurologist. The doctor asked Ross if he wanted the adjustment, which Ross usually doesn't like, he nodded yes. He also agreed he'd like the work done with the doctor's tools, not his hands, so he's showing a preference for the way he wants his treatments done. Betsy said he's very aware of all that goes on around him, which is definitely a good thing.
I hope all of you had a wonderful Thanksgiving. We are all so thankful for your continuing support of Ross and his family. Thank you so much for your healing thoughts and prayers.
November 24, 2004 8:50 PM--Ross had a really good day and is doing well. Friends are beginning to arrive for a big Thankgiving celebration, so Ross is seeing a lot of folks he may or may not remember. Betsy said he's participating in conversations a lot more, nodding and shaking his head in answer to questions. He's also showing more facial expression. Betsy wanted me to remind you that Ross will be at the Infineon Race Track on Saturday for the Sonoma Valley Cyclocross.
To all of you, our wishes for a wonderful Thanksgiving. Please, if you're going to be on the road, drive safely.
November 23, 2004 8:45 PM--Betsy has been away all day and I just talked to Rusty for the update...it's been a "Jeremiah Day." Jeremiah is Ross's number one caregiver, and according to both Betsy and Rusty he is absolutely the best. He kept Ross busy all day long, beginning with his physical therapy with Corinne this morning, who donated her time as her Thanksgiving gift to Ross. She and Jeremiah, with a lot of help from Ross, got Ross into the standing frame for a really good session. Later on Ross had PT with Steve, who had him on the mat working out. In between and all around PT, Jeremiah kept him busy all day long, and Rusty said Ross was working hard at knocking cones off his table and really paying close attention to Jeremiah when Rusty got home from work this evening.
Rusty wanted me to let you know that he's finally got Ross's phone line for evening updates working properly. Please call 707-799-8868 for updates any day of the week.
Thank you so much for your continuing support of Ross and his loved ones. To put his recovery in perspective, go to the updates from this time last year. There was excitement because he raised his arm and grabbed a lift, though Betsy was disappointed he wasn't able to have pumpkin pie for Thanksgiving dinner. Ross is now able to scoop his own food up with a spoon and eat it. Doctors said if he didn't show progress in the first six months, he'd never improve, yet his skills continue to develop at an accelerated rate. This past few months have been absolutely amazing. Thank you so much for your prayers, your healing thoughts and your wonderful, encouraging notes to Ross.
November 22, 2004 9:50 PM--Betsy said Ross is doing really well. His speech therapist was absolutely delighted with his progress. Betsy said she took a burrito with them to the appointment today so the therapist could see how well he is able to eat. The doctor had made apple crisp to share with her staff and patients, and Betsy gave some to Ross. She said he loved it and was very quick to respond when she asked if he wanted more.
He also saw his chiropractor for a visit. The doctor said Ross's eyes were "teaming" better than they have before. He was doing the "adjustments" which Ross doesn't particularly care for. At one point, Betsy said Ross glared at the doctor and said, "Stop, now." There was no sound, but it was more than obvious what he was saying!
Betsy also had the "yes" and "no" cards with her. The doctor asked Ross a series of questions, then reversed the cards to see if Ross was able to read them. He was, and had no problem pointing to the correct one.
He's able to move his mouth and tongue now without any problem. Can stick his tongue out beyond his lips on command, something that he needs to be able to do to "remaster" speech. Betsy said he also is able to do a "toothy" smile when she asks him to show his teeth, and there's no longer any hesitation when he's given a command. His improvement really is amazing.
Thank you so much for your continuing support, your healing thoughts and wishes for Ross's recovery. He continues to astound all of us, including his therapists and doctors.
November 21, 2004 10:15 PM--Talked to Betsy earlier this evening and she said Ross has been really sleepy lately, probably due to new meds he's been taking. Still, he's doing great in physical therapy, moving from his stomach to his side without prompting. He's drinking almost all of his fluids by mouth. When I asked Betsy about whether or not they might remove his stomach tube, she said they would probably wait until after his elbow surgery...though it's not a certain thing, she said it looks like it will have to happen for him to have more mobility.
Ross is showing so much improvement, not only in the standing frame, but on the mat, as well. Thank you, everyone, for your continuing support and healing prayers. He's already surpassed his doctors' expectations and there are no limits as to how well he will do. Thank you.
November 17, 2004 8:00 PM--Ross is still sleepy...in fact, when I called at 7:30 he had been asleep for about three hours, but Betsy said that was following an acupuncture session in which he was very alert and seemed interested in the procedure. She said she feels there are huge cognitive changes going on right now. Ross is understanding everything that's said to him, he's responding well, he's eating real food and chewing and swallowing without trouble. It's as if the small changes and signs of growth are all beginning to come together. Please keep Ross in your thoughts and prayers, and thank you so much for your tireless support.
November 16, 2004 10:00 PM--Ross was really sleepy today, in spite of a trip to the doctor in Santa Rosa. Betsy said that around 5:30 he was actually sitting up and pedaling on his trainer and was sound asleep! It's electric-assisted and his feet were going around, but Ross was out for the count. He also seems very sad, and Betsy said it's obvious he's thinking about what is different in his life and what he's lost. However, his neurologist said today that Ross is definitely "neurolinguistically aware." He understands everything he hears.
This will probably be a difficult time in Ross's rehabilitation, as he remembers the life he's lost and realizes the struggle he faces. Thank you, all of you, who remember Ross in your prayers and keep him in your thoughts. He really needs you now.
November 15, 2004 9:00 PM--Betsy sent me an update that really opened my eyes to how far Ross has come. When you read this list, think back to how he was doing just a few months ago. It's totally amazing!
Kate,
Ross has done so well this week. I think it is easier to tell you all the NEW things that he has accomplished.
1. Ross now sticks out his tongue on command. When we saw the neurologist on Wednesday, he asked Ross to stick out his tongue and he did. For the last two and a half years, doctors and speech therapists have asked him to do that and he couldn't.
He also asked him to raise his right hand and Ross did it without hesitation.
3. He also shrugged his right shoulder when I was asking him if he wanted to stop on the way home from the doctor's.
4. He is standing taller in the standing frame and sitting taller in his wheel chair.
5. Rusty saw him stretch while sitting in the wheel chair and he said that it was a normal stretching, something we have not seen when he was sitting.
6. Yesterday, the nurse observed him moving his head side to side as he was listening to music.
7. He now can roll from his back to his side when on the floor without any assistance.
8. He is biting and chewing. He continues to enjoy rice cakes with soft cheese, peanut butter or butter. He is also chewing his food. He has been eating meat loaf, green beans (cut into pieces about an inch long), salad. For breakfast last week he ate a breakfast burrito and ate the whole thing.We just cut it and gave it to him.
9. He is drinking more unthickened liquids at a time. For example, at 5 AM one day, when he drank 200 ml water.
10. His communication is more and more reliable. He is using head movements, touching the cards, or if he is just too tired, he looks at the card. I have ordered a computer program that will print out icons for communication.
11. Lisa, the nurse, asked him if he wanted to learn to do some things (she listed them) and he said yes. Bryan, one of our caregivers, lets Ross hold the telephone shower when he gives him a bath. Last night, Ross was squirting water in his mouth and
swallowing it.
12. We now ask him if he wants the arm splint on. The elbow sometimes hurts and we think he will have to have surgery in order to ever extend his right arm. He communicates yes or no about whether he wants to wear it.
13. Ross woke up laughing yesterday, and he laughed a long time. His whole face was more relaxed and his mouth opened wide.
14. He is still asleep now. He slept from 11 till 1 AM, and was then awake until 7 AM. I woke him at 1 PM for medicine. We will let him sleep a little longer and then start the day. It is good to be able to let him rest today, we are so busy. I also see this sleeping-in as a more normal event.
Our new physical therapist is wonderful and so is our PT assistant. I was so worried about losing our two PTs at the same time, but it is working out.
Betsy
Isn't this all awesome?
Personally, I think it's beyond awesome! Ross is doing so well, but it's because of the dedication of his family and friends and a wonderful team of therapists--and it's also because of all of you, the amazing people who continue to keep Ross in your thoughts and prayers, who support Ross and his amazing team both emotionally and financially. I hate to think where he'd be now if he'd been left in the care facility where there was minimal therapy and attention given. Ross is living proof that love and care will help the severely brain injured heal.
November 9, 2004 9:15 PM--I've been away but talked to Betsy tonight. She said she's just awed by Ross's ability to communicate. He's definitely improving, answering yes and no with head movements, pointing to "yes" and "no" cards and even reaching out and touching the cards. He's been really tired the past few days, but she thinks that's because he's been so congested.
They've been trying a new product that is supposed to help "cell communication." Betsy said she's done a lot of research on it (and no, I didn't think of getting the name of it and I'm sorry!) and said if it doesn't work, it won't hurt Ross, but if it does work, it could make a tremendous difference in his recovery. The product consists of polysaccharids (sugars) that supposedly cause stem cells to migrate to where there are damaged cells.
He had physical therapy twice today, this morning and later on this evening. I asked if Ross knew his therapists, and Betsy said he definitely recognizes them. He's doing well in the standing frame. The last few times he hadn't been standing up all that straight, but today after a great session on the mat he stood up really straight in the frame and didn't use the support in front at all.
Betsy said they've gotten him a drum pad but haven't done much with it. She really wants to sit down and work out a more consistent program for his cognitive work, but their days are so full it's difficult to find the time. "Two days," she said, laughing. "I need two days to concentrate!"
When I talk to Betsy and hear their schedule of therapy and doctor's appointments, I can understand her frustration. There just aren't enough hours in the day. I asked if Ross is trying to speak and she said yes, that he's making very loud noises not associated with coughing or clearing his throat, as if he's trying to recall the process it takes to form words and make sound. He does mouth words that are fairly clear to understand, and even raised his hand in greeting to a visitor today.
He's come so far. Ross still has so far to go, that it's easy to forget just how much he has gained. A year ago, much of what we take for granted now was just a dream. He's feeding himself and eating foods that require chewing, something he wasn't even close to not that long ago.
Thank you all so much for your continuing support, your kind notes, your healing thoughts and most of all, your prayers for Ross's recovery. You are all an amazing part of his team.
November 3, 2004 9:30 PM--Ross did really well on his trip to Stanford. It's a long day for him, especially with the heavy traffic, but Betsy said it was a good visit. The doctor examined him and said he thinks Ross's triceps muscles are strong enough to support his elbow--his biceps was causing his arm to draw in until the botox released the tension, but the doctor was worried that his triceps wasn't strong enough to eventually give him full movement. However, he thinks it is and will recommend surgery to repair Ross's damaged elbow to give him more mobility. His elbow was seriously injured in the accident, something that's never been thoroughly addressed.
Betsy said today was really good. Ross continues to nod "yes" and "no" to questions. He was also very solemn and sad for awhile, and when Betsy asked him if he was remembering, he nodded his head yes. That's got to be so tough for all of them--as Ross remembers his life before this nightmare he can't help but feel terribly sad over what he's lost.
I hope, at some point, he'll also realize all he's gained. It still truly amazes me that so many people continue to pray for Ross, donate to his fund, read this website and keep him in their thoughts as he goes through the difficult job of healing from such serious injuries. Many of you knew Ross before, but just as many have only known him since he was injured, and yet you remain among his strongest supporters. Thank you so much for being there for Ross and his loved ones.
November 2, 2004 9:45 PM--Just a brief update tonight. Talked to Betsy and she was laughing about something that happened today. Rusty had called and asked something about Ross, so Betsy went to Ross and said, "Daddy called and he said..." and Ross shook his head vigorously, as if he didn't want to hear. Almost an hour later, Betsy brought the subject up again. "Daddy called and..." Once again, Ross shook his head. He didn't want to hear. Not good for Rusty, but obviously Ross's short term memory isn't as bad as they've thought!
Tomorrow is a follow up trip to Stanford for a check on the Botox, but today was pretty darned good. Ross had an excellent session in the standing frame. At first he wasn't responding to questions, but he did react well to the Yes and No cards, even putting his hand on the proper one for his answers.
His improvement is so amazing, especially considering the injuries Ross has had to overcome. Thank you so much for your prayers, your support, and your friendship.
November 1, 2004 9:20 PM--I can't believe it's November! Just typed the date and it startled me...Betsy sent me an emailed update for today, so I'll just print it below:
Hi,
Ross had a good day. He started the day being sleepy, but after the 20 minute trip in the car, and a wait for the chiropractor, he had a good session. Then another drive of 40 minutes to speech where he demonstrated all the gains he has made this week in chewing. The therapist had never seen him eat a rice cake. She put some of the cranberry relish we had on the rice cake for him to eat, and when she asked him if he wanted more, he nodded yes. He responded to questions several times. In fact this was the first time he had consistently communicated with her with head movements. When she said goodbye to him, he mouthed "bye." She said she thought his progress from last week was phenomenal. Understandably, he was really tired after this. Eating and all of the wonderful tongue movements are still exhausting for him at this point, especially when it lasts almost an hour.
After a rest, he spent an hour on the mat, most of it on his stomach and scooting around on his stomach. Then an hour on the pedals before dinner. Dinner required more chewing.
Upper respiratory congestion continues to be a problem, but it is much better than two months ago.
Tomorrow is another day with more to work on, and more progress.
October 31, 2004 9:11 PM--Betsy said Ross had a great weekend and today was especially nice. He's slept through the night the last couple of nights and then remained awake during the day. He's much more agile while feeding himself, is chewing well and able to use his tongue a lot better in moving food around. That may seem like a fairly simple thing, but for over a year and a half Ross was unable to move his tongue at all. Now he can lick his lips. Think of all the things your tongue does when you're eating and talking.There are so many different movements that require a lot of control--slowly, but surely, Ross is regaining all those abilities.
He's also responding well to questions with a shake or nod of his head. Betsy said that when they're not quite sure of his answer, they're using large YES and NO cards. Ross either nods toward the one he wants, or sometimes even touches it. He appears to be trying to vocalize, and sometimes seems so close to speech. It can't be far off.
Thank you everyone for your continuing support, your prayers and healing thoughts for Ross's ongoing recovery.
October 27, 2004 10:00 PM--Other than a frustrating doctor's appointment (an hour and a half wait and a doctor who wasn't really sure why they were in his office...) it was a pretty good day. Unfortunately, there are doctor's appointments away from home every day this week, so please hold the good thought for Betsy and Ross, that things go smoothly and well.
Betsy said they made a trip to Whole Foods Grocery and after testing the rice in the deli, ordered some for Ross. Betsy got a salad for herself and they sat outside and ate. Ross is doing so well now with foods. It's really amazing to see how far he's come in such a short time.
He'll be going back to Stanford for more followup on what the Botox is doing. It's loosening his biceps and now it's down to whether or not the triceps is strong enough to move his arm in and out. Ross is doing so amazingly well...thank you for your support, your prayers and healing thoughts.
October 26, 2004 8:40 PM--Received another update from Betsy--I really love it when she's able to find time to write to me, as it's so much better to get her direct perspective. The schedule they keep, day after day, is so exhausting that it's a real treat when she can actually take the time away from working with Ross to sit down and write a note.
Kate,
Ross was very tired again this morning, but he perked up after acupuncture. Afterwards, I said "Ross, it seems that acupuncture helped you feel better." Ross nodded yes.
We got his lab work done, and every thing seems okay. What a change to get the results within four hours. After getting blood drawn, we went to a taco shop for lunch. Ross had a burrito, and he did a masterful job of chewing and drinking his soy latte. He then ate part of my steak taco.
We all rested after we came home, and then at five Ross had physical therapy. The session was okay, but Ross was definitely not feeling well. After it was over, I tried playing ball with him and it took a while to get him to respond. I finally asked him if he was thinking about how things have changed. He nodded yes. I then talked to him about how it is sad and not fair, but we can't let it stop us. This is the hardest part for me. My heart aches for him and that he has lost so much. Please pray for Ross as he goes through this period of increased awareness. That he is aware of all this is a good sign, but it is so hard.
Betsy
At some point, Ross will be fully aware of all he has lost and all the horrible things his body has been through, but at the same time, at some point I think he's going to look at the letters in his guestbook, at the reports on this website and the amazing cadre of supporters who have been there since his accident, and he will see how far he has come. He has made such amazing gains since his accident, and so much of the credit goes to the wonderful support of all of you who have stuck by him throughout his long recovery. Thank you so much.
October 25, 2004 8:45 PM--I'm away part of each week and unable to work on the website, so I really appreciate it when Betsy is able to do an update for us! Just received the following note from her:
Kate,
Again, the days have been a blur of activity. Ross actually only had one appointment away from home last week. This week, he has five appointments away from home and four in home therapy appointments. This is in addition to daily sessions on the mat, the pedals, standing frame, etc. Work with a pencil and cognitive work.
Ross has seemed very sedated for the last five days or so. We are cutting back on the anti spasticity medication, Zanaflex, that we started two weeks ago. I am also requesting another lab test to check his sodium levels.
His sessions in the standing frame have been good and he is continuing to communicate with head movements. He mouthed yes to a question again yesterday. Rusty and Ross have been working with the yes/no cards and their equivalent head movements. When shown the cards, he has given us the correct head movements the last three days. This is now a daily activity.
It is clear that Ross is becoming bored with some of the things he has mastered, but which have little game value. Yesterday, and this is big news, I gave him a flat container of lentils, a large serving spoon and a small bowl. Ross spent 45 minutes scooping up the lentils, then dumping them in the small bowl. It was awesome to watch his problem solving and determination. I am sure he was exhausted and that may account for some of his fatigue today.
At speech therapy today, he ate a stew that had whole baby limas in it and did a beautiful job of chewing the meat and beans. Dr. Swain was delighted. This means we can start moving from always making sure his food is enough to swallow w/o chewing.
If anyone has ideas for keeping for things that Ross can do to practice his skills, we would love to hear them. Things that Ross can work on by himself are great.
Betsy
October 20, 2004 9:45 PM--Betsy said Ross seemed very tired today for some reason. However, when he was awake and watching funny stuff on TV, he laughed. He also woke up laughing and smiling. In general, he's doing really well. Cognitively, he may be doing far better than anyone is aware because he's still unable to communicate. I think that's got to be the biggest frustration for his folks, but he seems so close to talking. Thank you so much for your continuing support, for your healing thoughts and prayers. You are such a powerful part of his recovery and we really can't thank you enough.
October 19, 2004 9:00 PM--Just a quick note to say that Ross had a good day, though I'm lacking a lot of details because Betsy got called away early this morning when Ariel had an accident on the way to work. She's fine, but that's after rolling the car in the rain...I imagine Betsy's the one who's more shook up than Ariel. Kids are NOT supposed to do this to their parents!
Thank you so much for your continuing support, your prayers and kind words in Ross's guestbook.
October 18, 2004 9:45 PM--Betsy said Ross has been laughing all day. Now, whether or not that's a result of their doctor's advice to show Ross lots of comedy or not is debatable, but it's great to hear he's laughing. Betsy said it sounded like the "old days."
I asked if he had any residual effects from the seizure, but Betsy said, other than being really sleepy yesterday, he was doing great. Ross is very bright, very aware, and definitely responding to what's going on around him. He's really congested, but hopefully with the storm blowing in tonight the air will clear and he'll feel much better. Thank you so much for your continuing support, your prayers, and your wonderful notes to Ross's guestbook.
October 17, 2004 9:15 PM--Ross had a really huge seizure last night. Rusty said it could have been two or possibly one that seemed to settle, then took off again, but it was about eight minutes in duration. Ross's folks finally gave him some medication that helped calm the seizing, but it was still a pretty frightening, exhausting period. The one positive note that everyone hangs on to is the fact that so often the seizures come before great advances, as if new synapses are making contacts and new neurons are fireing...it's so hard to know for sure.
Rusty said Ross was tired today, but still had a really good day and didn't seem to suffer any ill effects. (I think his parents are exhausted...) Though he hadn't slept well on Friday night, Saturday was one of his best days, until the seizure occurred.
Betsy said he's much more communicative. She had a catalog with clothes in it and went over them with Ross. He nodded vigorously when she pointed to things she thought he'd like. Betsy also talked about Thanksgiving and all the foods that Ross liked, especially things they'd hoped he would be able to eat last year, but still wasn't ready for. She said he was really attentive, and responded to her descriptions of the different things on the menu. They had a really good evening, but she seemed to sense the seizure coming on, so she and Rusty were ready for it when it finally happened.
Still, Ross had his best standing frame session ever yesterday. He's shifting his weight, standing really straight and tall, and appears much more comfortable. Betsy said he's working with a new therapist now, but Steve appears to be really good with Ross and they're very happy with the work he's done.
Betsy said they're working on his hand and wrist, trying to get Ross to hold the proper position and not curl his fingers as he's been doing. Please, if you're saying prayers for Ross, pray for function on all levels, but on his right hand, particularly. Your prayers have a lot of power, so this isn't something we ask lightly. To all of you, thank you so much for your continuing support of Ross and his loved ones.
October 13, 2004 8:30 PM--Just talked to Betsy and Rusty...it was a busy day and Ross WAS NOT interested in getting up this morning, but once they got him out of bed he did well...of course it took him until lunch time to really hit his stride, but I've had days like that so I really sympathize! He's really congested from all the smoke in the air from the Rumsey fire over in Yolo and Napa counties, so Betsy was sure that had a lot to do with his lack of interest in things at first, but then she gave him a popsicle, which appears to be the new munchie of choice. She said after he had his popsicle, he was more alert, more active and definitely more responsive.
Betsy had to run some errands this afternoon so Ross was with his caretaker, but this evening he had a great session in the standing frame and was doing really well. She's ordered a special pen for him that has a large grip designed to fit his hand. They're hoping he can get better control of it and possibly that will lead to writing and better communication.
In the meantime, Ross's cost of care is once more an issue. His COBRA insurance ran out at the beginning of the month and Betsy said she got a real shock when she picked up his regular medications from the pharmacy--the bill was over $600. Medi-cal will help, but coverage is far from complete. He'll move into Medi-care after December, but once again, coverage is minimal. At this point, all the therapy that is helping Ross so much is covered by donations...his caregivers are extra and their costs are totally out of pocket, as well as some of the doctors that the Dillons take Ross to see.
Their appreciation to those of you who continue to help offset the huge expenses for Ross's care is beyond measure. Thank you so much for all your help. Ross continues to improve, far beyond the doctors' expectations, and it's due to the wonderful care of his family and dedicated caregivers and therapists, as well as to your healing thoughts and prayers. Thank you so much for your support.
October 12, 2004 9:15 PM--Today went really well. Ross had physical therapy in the morning. Instead of using the standing frame, Jeremy (PT) tried something different. He's been reading about "patterning," and decided to put Ross on the floor mat with pillows under his middle. Then he worked on moving his left leg and arm, as well as helping him turn his head to the left. They repeated the process with the right side. Betsy said the ideas behind the therapy are still controversial, but they're willing to try and see if it helps Ross.
After dinner tonight, Betsy gave him a popsicle. She said Ross wanted to bite big pieces off of it, but she made him wait until it had softened a bit so he wouldn't choke. She said Ross was really animated, licking it and sort of studying it, looking seriously at it and trying to talk. The cold is supposed to stimulate nervous response and she said it really appeared to be doing just that. At one point, Rusty carried his dinner over by Ross and sat down to eat. He offered him a sip of his wine, and Betsy said when Ross nodded yes, that he'd like some, it was a truly natural, normal movement.
The Dillons are trying to find a hyperbaric oxygen treatment center within an hour and a half of their home. If anyone has information regarding one, please contact Betsy Dillon.
Thank you so much for your continuing support and healing prayers for Ross and his loved ones. He still shows improvement, long past the period where doctors expected him to continue to heal. It's pretty exciting for all of us to see how far he has come, and how well he continues to move forward. You are all a very important part of this process--please don't ever underestimate the power of your caring.
October 11, 2004 9:20 PM--Ross had a really good weekend--Betsy said he's more communicative with vigorous nods and shakes of his head in response to questions...where he used to make a single movement to answer, he now nods several times or shakes his head vigorously. He's showing more progress in movement with his left side and continues knocking the cones off his tray with his right. He had a really great session in the standing frame and is holding himself very straight and erect. Betsy said he's also using his tongue more when he's eating--licking his lips, moving the food around in his mouth, even using his tongue to dislodge food trapped between his teeth. It wasn't all that many months ago he couldn't even move his tongue beyond his teeth.
Betsy mentioned a really interesting book she's reading, the Better Brain Book by David Perlmutter M.D. I've provided a link to the book at Amazon.com if you'd like to take a look. Betsy said it's not just for brain injuries--the book also contains a lot of interesting nutritional information as well.
Ross had a slight "not a seizure" tonight...he was on the mat working when he began blinking and showing signs of seizure, but after five minutes of seizure-like activity, he just sighed and was perfectly fine. It doesn't appear to be a typical seizure and leaves no noticeable after-effect.
Ross continues to show improvement. Thank you so much for your continued support, your healing thoughts and your prayers.
October 6, 2004 8:30 PM--Ross had a pretty good day today. Betsy told me he no longer takes his meds through his feeding tube, but instead takes them by mouth with a glass of water or juice. Hopefully, they'll be able to remove the tube before too long, but for now it's a good way to make sure he gets enough fluid in his diet.
Betsy said he's really nodding "yes" and "no" regularly in response to questions. He's also been sitting and listening to music, and has started moving his head to the music. He's looking really good, very alert and healthy. His mom really sounded upbeat when I talked to her tonight.
Thank you all so much for your prayers and healing thoughts for Ross and his loved ones. Thank you, too, for your wonderful notes in his guestbook. His mom reads all of them to him.
October 5, 2004 9:20 PM--I just talked to Betsy and she said Ross is doing well. He's on a new anti-spasticity drug that tends to sedate him a bit, so he's usually more sleepy than normal in the mornings and again late in the evening when he takes it. He saw the osteopath today and got the results of hair and urine sample tests. They show adrenal fatigue and low thyroid, which means he's essentially spending a lot of time in a "fight or flight" mode, ie: anxiety. Possibly it's from increased awareness of his condition. Betsy said she did talk to him today about his injury and the fact he's slowly getting better, and she mentioned things in his past, people he'd known, and she said he started to cry, which tells her he's very aware of the meaning behind her conversation.
Slowly but surely, Ross is getting better. Betsy and I talked tonight about the things he'll remember from this time in his life, if he'll recall stuff folks have said within his hearing. Thank you so much for your thoughts and healing prayers for Ross and his loved ones.
October 4, 2004 8:20 PM--I talked to Ariel a little bit ago and she said Ross was busy pedaling away and exercising, but she hadn't been there all day so couldn't really give me much of an update. Betsy emailed one to me last night, which I'll print here for you:
Thursday: We had a successful trip to Stanford. I feel blessed to be in the Stanford system and I particularly like Ross's doctor. The doctor prescribed a new medication to help reduce the spastic contracture in Ross's right hand. The Botox has helped, but they can't Botox all the muscles. Ross started taking the new anti-spastic medication last night. It makes him sleep for a couple of hours, and reduces his blood pressure for a couple of hours, but tonight, almost 12 hours after taking it, he is alert, less toney and doing great.
Ross was sick on Friday and Saturday: a low grade fever, fatigue and some pain. We think he had a virus; the rest of the family didn't feel well either. We let him sleep as much as he wanted.
We are getting used to the increased splinting regimen for his hands, right elbow and left foot. Ross is handling it pretty well. I think the elbow splint precipitated some soreness, but that seems to have lessened.
The big news is that Ross is showing us more and more that he understands what has happened and he is able to make connections between his disability and other people's injuries. We were watching a program on shark attacks, and in it a little boy had been attacked by a shark. Ross became very sad, and when I asked him if it made him think about what had happened to him, he nodded yes. I proceeded to talk to him, and between his nods (yes) and a shake (no), we talked about how hard it is now, and how much things have
changed.
Also, Ross ate barbecued meat that had been cooked until it fell apart, and he chewed it well. He also had his first pop sickle today. Really cold things hurt his teeth, but he learned how to reach part way with his tongue to touch it, and he also sucked on it. At dinner tonight, he has been using his tongue to move the food more effectively, and to collect pieces from inside and at the corners of his mouth. It seems that the work with the pop sickle helped.
Betsy
September 29, 2004 9:20 PM--Ross had another really busy day, with physical therapy in the morning, followed by occupational therapy and then time on the mat with Lisa helping him. The physical therapist hadn't seen Ross for a month and was really amazed by his progress, especially by how alert and aware he is. Betsy said they made an important discovery about the standing frame today--the tray was adjusted incorrectly and actually made it more difficult for Ross to stand up straight in the frame. As Betsy said, sort of a "du-oh" moment! They've got it set up properly now and will find out next time he uses it if there's an improvement.
They have to get up early and head back to Stanford in the morning for his follow-up exam. It's going to be a long day for all of them. Please keep Ross and his loved ones in your thoughts and prayers, that they have a safe trip through the Bay Area tomorrow.
September 28, 2004 9:10 PM--Betsy said Ross did pretty well, considering it was a really busy day and he was terribly congested today. Started the day out early with physical therapy and was fitted for two dynasplints: one for his left foot and the other for his right arm. After that they got him on the mat on his hands and knees. Betsy said the process was pretty labor-intensive and required pillows to support him, but the object is to replicate developmental steps. After lunch they took him to the osteopath for a treatment, then a stop at Whole Foods for groceries--they didn't get home until late. Betsy said that when she got to the store she asked Ross if he wanted anything, and he nodded yes. When she asked if he wanted coffee he nodded yes again. He definitely knows what he wants!
Tonight she said he was watching TV when I called but appeared to be thinking of something else. He does that often when he's had a really full day, and today was definitely busy. Thursday he goes back to Stanford for a follow up on the Botox. Also, Betsy said they're going to talk to a machinist to see if he can modify the Hoyer lift to make it taller so that they can use a walking sling with it. It seems as if there is always something they need to do to adapt equipment and make it more serviceable for Ross.
Thank you so much for your continuing support and your prayers for Ross's recovery. He continues to progress on this very long, slow but consistent recovery.
September 27, 2004 10:30 PM--Ross had a really busy day today, starting out with a trip to the doctor for blood tests to try and find out the source of his low-grade anemia. After that he saw the chiropractic neurologist who worked his left arm a lot and told Betsy they needed to do the same at home, as the exercise helps to stimulate receptors in his brain which helps them heal. Ross is using his left hand more and after Betsy moved the toggle switch closer, was turning the radio on and off at will. Ross also let his mom brush his back teeth, something he's been fighting. It wasn't all that long ago he couldn't even open his mouth on demand. He continues to be more involved in what's going on around him and is more alert and aware.
September 26, 2004 9:30 PM--Called Betsy tonight to catch up after being away since Wednesday and it sounds as if Ross is doing really well. She said the Botox is working to a certain extent, though there are still some muscles keeping tension that were not affected by the shot. However, Ross is using his hand more and showing more mobility.
Betsy spent the day home alone with Ross as Rusty and Ariel were working at the volunteer firemen's booth at a festival in Sonoma. She said they've installed a new toggle switch that allows Ross to turn the radio off and on and also a light. More things can be added to it, but they've started with just the two and Ross has done really well. Betsy said he grasped the concept immediately. He was using his right hand, but at one point when Betsy was adjusting the splint, he used his left. Moved it in very small increments, but the progress is obvious.
She said he's smiling more, laughing out loud, nodding yes and no to questions. He's also less congested and appears to be responding well to a pro-biotic Betsy has been giving him. Speech can't be too far away.
Thank you all so much for your continuing prayers and healing thoughts for Ross and his loved ones.
September 22, 2004 8:50 PM--Ross did really well today. He had an appointment with a dermatologist who removed a couple of questionable moles, one from his back and one from his arm. Betsy said he didn't complain a bit and was really cooperative. Later in the day he took a nap then had a great session on the mat. Betsy said he's really alert and it's more noticeable every day.
They noticed today he spent a lot of time just sitting and looking to the left. Turning that way is supposed to indicate the return of memory, and Betsy said he did that a lot today. He's reaching out for things with his right hand, and in many ways, following the process taught in child development classes as he relearns so many of the basics of existing.
Thank you so much for your support, your prayers and your healing thoughts. It's so exciting to see Ross continue to improve.
September 21, 2004 8:50 PM--Ross had a really good day today. He got the new splint for his elbow and when his therapist measured his extension, he was at 110 degrees. Normal is 180, but the fact that Ross is able to extend this far after all the injury and the contraction is wonderful. If he can work it out to 180 degrees with the splint, it will mean he won't need surgery to free up the joint in his elbow. His physical therapist thinks there is actually less boney protrusion on his elbow, which means some of the calcium may be breaking down.
Betsy said that when they were in the car today, she looked back at Ross and noticed his left hand had slipped off the tray of his wheelchair and dropped down by his side. She asked him to put it back on the tray, which he did. It was only then that she realized it wasn't his left, it was his right he'd dropped down, and that arm is usually tightly constricted and resting on his tray. She said when she told him to move it, he lifted it back to the tray. They were on their way to see the neurologist, who hasn't seen Ross for a month. He was really impressed with his progress.
Jeremy, Ross's physical therapist, said Ross's continuing recovery exemplifies what he was taught in school, that if you create the perfect environment with supportive care, a loving family, and proper therapy, the patient will improve. Ross is proof that this works.
On a personal note, my sister-in-law, Linda, is going in to UCSF for breast cancer surgery tomorrow. Please say a prayer for all women--and men--who deal with this disease. She's a terrific lady and I am definitely sending all the positive healing thoughts I can.
Thanks so much. You are such an amazing support group. I can't wait until Ross is able to read this website.
September 20, 2004 10:30 PM--Just a brief note to let you know that Ross had a good day with visits to his chiropractic neurologist and the speech therapies. Tomorrow he'll see the physical therapist, the occupational therapist and his neurologist, and on Thursday he's going in to have a mole on his back biopsied. Life right now sounds like nothing but a series of doctors' appointments, but it's so much more than that. Ross is doing well cognitively and is very alert. Betsy said it's getting much easier helping him in and out of the car for trips to appointments.
Thank you all so much for your thoughts and prayers for Ross's recovery.
September 19, 2004 9:00 PM--I called Betsy tonight to see how Ross's Botox shots went on Friday. It was a long day--they left the house at 7:45 in the morning and didn't get home until 3:00, but Betsy said Ross did really well. He had seven injections beginning at his biceps muscle to down near his wrist. They use a hollow needle that is inserted and moved around a bit to find exactly the right spot for the Botox, so it's a pretty painful procedure, and she said he was still sore today, but he did great at the hospital and tolerated the shots really well. They already see a difference in his mobility. His right wrist is definitely more relaxed. She said they'll be splinting him more often and using massage on his arm and hand.
Betsy said that while they were waiting for their appointment, Rusty waited outside with Ross and talked to him about the shots and the things they might eventually make it possible for him to do--drive his wheelchair, even at some point, the van. Ross was definitely interested in the possibilities.
Overall, he's chewing better and swallowing fluids with more control, not as congested as he's been, and he's very alert to what is going on around him, as well as better able to communicate--though he's still not speaking. Please remember Ross and his loved ones in your thoughts and prayers. You are all very much a part of the successes he finds each day.
September 14, 2004 8:45 PM--Ross's morning went well, though he was really congested today. Even his nebulizer wasn't helping. He had a good session in the standing frame, though it was obvious his congestion interfered with his concentration. He had an appointment with the osteopath this afternoon but seemed really tired afterwards. They'd just gotten him home and in bed for a nap when Ross had a petit mal seizure. Betsy said he remained conscious and alert throughout, but he definitely looked much better when it was over.
I'll be updating again on Sunday. Thank you for your prayers, your healing thoughts and kind notes in Ross's guestbook.
September 13, 2004 9:15 PM--Today when Ross was at the chiropractic neurologist's for a treatment, Betsy said he would flinch when the doctor worked along his neck...finally, Ross turned around, glared at the doctor and very clearly said, "Ow."
As Betsy said, at least this time she had a witness when he spoke! Even the doctor had tears in his eyes, and Betsy said Ross has been very alert all day. His speech pathologist was impressed with what he's doing now, and said it was highly unusual for a person with Ross's extensive injuries to continue to show such amazing progress. When he was in her office for his appointment, he ate a turkey roll-up that Betsy had fixed for him. She said when food got caught behind his teeth he was able to clear it out with his tongue...when only a couple months ago he couldn't even move his tongue beyond his lips.
He's kicking cones placed on the floor now, as well as pushing them off a table set far enough away that he has to reach, something that is difficult with his bad elbow. However, he appears to relish each new challenge and his competitive spirit is very much still there.
To all of you who continue to pray for Ross's complete recovery and who hold good thoughts for him throughout the day, a very big thank you. It may be a long, slow process, but it's all in a positive direction. He's truly doing amazing things, and it couldn't happen without your support.
September 12, 2004 9:20 PM--Ross has had a really good weekend. His sister Liz and her husband Warren were here for a visit. Warren set up obstacles for Ross to knock over in a more complicated pattern than he's been doing, and he did great. Betsy said that when they were stacking the cones for him to knock down, Ross mouthed, "I can do it," very clearly. He's still not able to produce sound, but the comments he shapes with his mouth are in full sentences. When he finally figures out the sound, he's going to do great!
Betsy said it was obvious from Ross's reaction to the entire process of knocking over cones that he's still very competitive. That certainly hasn't changed, and it's probably responsible for a lot of Ross's success so far. He doesn't like to lose!
His sister also got down on the mat with him and tried to get him to move forward. Betsy said he tried really hard, and acted as if his muscles were sore today when she tried to work with him, so he was definitely pushing himself.
When I called tonight, he was eating his dinner. Betsy said they'd watched a really smaltzy movie about weddings, a story where a man's three daughters got married, and Ross seemed sad. She wonders just how much he remembers about his own plans and said he was obviously upset after the film. Betsy said she told him about his accident and why so much had changed, but at this point it's hard to know how much he recalls...another reason we're all anxious for him to finally regain his ability to speak.
Ross continues to show improvement, to the point where he is amazing his doctors and constantly surprising his parents and his caretakers. It's been a long haul, but he still has far to go. Thank you all so much for your continuing support, and also for you thoughtful notes, both as e-mails to the family and notes in Ross's guestbook. Your kindness is a huge part of Ross's recovery.
September 8, 2004 9:30 PM--Ross did really well today, including an excellent visit with Dr. Adams, his chiropractic neurologist. Betsy said he's been really working hard, especially when on the floor mat where he is able to move around with a freedom he doesn't have in the standing frame. The doctor suggested Ross spend even more time doing floor exercises as they stimulate so much of his brain.
Betsy said that, as great as the standing frame is for Ross's therapy, it's not easy to use it as often as they want because it takes three people to get him into it. He still needs to have someone hold his foot in place as it wants to twist inward, and two to work with his upper body. We talked tonight about the possibility of using a brace, but Betsy said Ross is so close to having control over his foot that they figure it won't be much longer before they can get him into the frame with just two of them to help.
One interesting thing is that the homeopathic neurologist said Ross was allergic to fish. Betsy has been giving him supplemental fish oil tablets twice a day for quite some time, but she stopped them yesterday and said there was a noticeable improvement in Ross's responses today. She said he really seems to be trying to talk and she feels he's very close. He's definitely more alert.
On a side note: you've probably noticed I'm not updating every night, but it's because I've been out of town a lot and haven't had access to my computer. There will almost always be an update on Sunday, Monday and Tuesday nights, but the others will occur only if I'm in town. Hopefully, things will settle down before long and I'll be more consistent with my reports.
In the meantime, thank you all so much for your continuing support for Ross, for your healing prayers and thoughts of strength. You are all an important part of his recovery.
September 7, 2004 10:00 PM--Ross is 28 today. Now, since I've known him since he was about fifteen, I feel there's been a serious mistake made, as he can't possibly be that old, but he is and I am and guess we'll just have to deal with it. Time passes so fast it's scary. Thank you, those of you who sent messages to Ross's guestbook. Betsy said it was so neat to read them tonight when she finally got a chance to go online.
Ross had a really good day. A family friend came by with her four year old and a large card made by her eight year old. Also brought a birthday cake, and Ross ate three slices. Betsy said it's the first time he's had anything of that texture, she cut the slices thin and he managed to chew and swallow just fine.
Betsy spent time with the homeopathic neurologist today. Ross didn't go, but his mom was able to get a lot of interesting information that will hopefully make Ross more comfortable. Betsy is constantly working with Ross's diet to find the optimum foods for his recovery, though it's obvious he's in excellent health, other than his obvious injuries.
There's a real sense of optimism about Ross, as if the people who work with him daily know he's moving forward at an amazing rate. Your support is so much a part of his recovery. Thank you so much for your continuing prayers and healing thoughts.
September 6, 2004 9:15 PM--I'm just back after a number of days away and received an emailed update from Betsy after talking to her tonight. Tomorrow is Ross's 28th birthday. It's been well over two years since he was injured, and his recovery continues at a slow but steady pace. He's doing so much more than doctors thought he would ever manage, and though he still has along way to go, it's pretty amazing to see how far he has come. It would be a wonderful gift to Ross and his loved ones if you would say a special prayer for him tomorrow. Here's the update I received from his mom:
Kate,
This is the eve of Ross's 28th birthday. I have been feeling sad off and on all day. I looked back at the entries a year ago and realize how far Ross has come, and how much hard work he has ahead of him.
Ross has done some new things in the last few days. At 1 AM a few nights ago, Jeremiah saw Ross wiggling his left foot the way he does his right foot. This is the first time that we have seen this and means that his left foot and leg are starting the process of achieving more function. This is needed for standing, shifting, and eventually walking. Also, when Ross was waking up and stretching yesterday, he stretched his left arm up toward the ceiling.
He is doing much better drinking water from a glass. His chewing is good, but he appears to forget that he is chewing and then chokes a little. I notice that he really does do better when he is standing and then afterward. For example, after he has been standing, licking his lips, chewing, drinking unthickened liquids, and knocking the plastic cones off the table all go much better. Standing helps the brain to organize and work better. Therefore, it is really important that we reach the point where only two of us are required to get him standing. When we can do that, we will get him up at least three times a day. That will continue to give him practice with trunk control, weight shifting and correction -- all things that he needs for unsupported sitting, for starting to stand unassisted and then to walk.
After he was seated, there were two cones on his chair. He had knocked the easy ones off and these two were harder. Rusty said," I want you to knock this one off and then this one." (it was on the far left). Ross immediately started moving his right arm to obey.
He also is starting to use his mouth, his head and his arm to move things on his tray.
This is all very exciting for us in his fan club. Please thank everybody for their support. We can't do this by ourselves.
Betsy
August 31, 2004 9:00 PM--Things are going well today and Ross had a very busy and good day. Started out with physical therapy in the morning, including time in the standing frame, then a visit whit the cranial osteopath. Also talked to a rep from a company that makes an adjustable boot that should help with Ross in the standing frame. Ross was really relaxes after his visit from the cranial osteopath, who was really impressed with Ross's physical abilities.
Ross is doing more for himself every day, and obviously growing stronger. Thank you all for your thoughts and prayers and your amazing support for Ross.
August 30, 2004 10:20 PM--It was a really busy day for Ross today. Betsy said they saw the chiropractic neurologist first, and he was absolutely ecstatic about Ross's progress with knocking the cones off his tray with his right hand. What really surprised him, though, was when Ross was able to knock the cones off with his left hand. The doctor tried some special glasses on Ross that have a camera inside. It allows him to get film of Ross's eyes during specific movements and motions, which will tell him what part of Ross's brain is working during those times. Once he knows what is and isn't working, he can form a better course of therapy directed specifically to Ross's needs.
Ross also saw the speech therapist today, who recommended an allergist to help figure out what foods Ross should avoid to control his congestion. However, Ross was able to show how well he is now able to chew his food and swallow. Betsy said he's doing well with rolled up pieces of turkey (so long as there is mustard on it!) which he is able to chew and swallow without difficulty.
Betsy said his biceps muscle seems much looser and he's got better movement in his arms. Ross still hasn't had the Botox shot, but Betsy will check when he goes in for the appointment to see if he still needs it.
Ross continues to improve and grow stronger. Thank you so much for your prayers and healing thoughts for his recovery.
August 29, 2004 7:45 PM--I apologize for going so long between updates, but I ended up having to be out of town--unexpectedly--for a week and was not able to access my computer. Betsy sent a letter this evening with a great update:
Kate,
This has been a very busy week and people are on vacation, but Ross has continued to progress in spite of it. He really watches his caregivers a lot, but he also seems to be trying to communicate with me.
His physical therapy appointments have been very good. Getting him into the standing frame is easier and easier. The difficult part is getting his left foot in the proper position so that it is weight bearing. This prevents injury to his ankle and foot, but it also sends the right neurological transmission through the body's wonderful central nervous system up into his brain. I look forward to the two of us being able to get him standing (right now, one person keeps the foot and ankle in position while the other two help him lean forward and bring his arms up on the tray). Of course, Ross is learning how to do this as we do it each time. We want to be able to get him up three times a day for eating, watching television, and playing games. We feed him in the standing frame now, and as he moves to reach the food (we are moving the spoon all the time) he gets practice in weight shifting, trunk control, and position correction. These are things we learned as babies, and Ross is having to relearn it, but this time he has to control more height and weight as he learns. Usually Ross leans on the tray of his standing frame with both arms. On Thursday night, we helped him stand back a little without resting on his arms and he knocked the cones off the tray of the standing frame with his right arm. This was a first.
When he knocks the cones off his tray, he knocks them off faster than we can replace them. When we put a cone on his left side, he crosses midline with his right arm so that he can knock it off with his right arm. But on Friday, he knocked a cone off with his left hand twice. He was using the tiniest movement, but that is how function returns.
On Friday, we took Ross to get an EEG. It was necessary for him to keep his eyes and head still, a hard thing for him to do. There were periods, however, when he was very still. I think the stillness was volitional, and that when he started to move again it was because he forgot that he was trying to be still.
The speech therapist continues to be pleased with Ross's progress: opening his mouth wider, his tongue coming further out to lick chocolate off his lips, and he is chewing better. I am giving him pieces of thinly sliced meat for chewing practice. He is making sounds and moving his lips, as if to speak. I am praying that he speaks on his birthday, September 7.
Yesterday, when Lisa put him on the mat on his stomach with his arms under him, he turned himself 180 degrees around, ending up with his head where his feet had been. This is very exciting, and brand new.
We took him to St John's Petaluma today for church. This is the church where Ross grew up; he was an acolyte and it was the center of our social life. When we first arrived, his arm twitched a lot and he seemed overwhelmed. But when our friends came to speak to him at end of the service, he seemed to recognize some of them. I thought that he enjoyed the service. I also noticed him looking intently at one of the stained glass windows.
Bryan, one of our caregivers just set up the Atari game and Ross has his hand on the controller and Bryan has his hand over Ross's to guide him. This is the first time in awhile we have tried it, and his hand is much looser as is his arm. In fact, he has been lifting his arm up and to the side a lot. His ability to move his right arm this much has been developing over the last month and it is exciting. I almost forgot that Bryan was holding his hand up this afternoon and Ross was lifting his hand to bump Bryan's hand. Also, when Bryan pushed against Ross's hand, Ross pushed back.
Betsy
I just called and talked to Betsy and she said Ross ate a slice of turkey tonight--she put some mustard on it and rolled it up in a cylinder and he was able to eat it. While we were talking, he was feeding himself. She said that, all in all, he's had a really great day.
Thank you so much for your thoughts and prayers and your support for Ross and his loved ones.
August 22, 2004 9:30 PM--Betsy said Ross is increasingly more alert, he's moving his right arm more and with more control. They put a bunch of plastic cones on his wheelchair tray and Ross can knock them off as quickly as they can put them up. He's consistently having good sessions in the standing frame, and working hard at his exercises. He's chewing much better and Betsy said she made him some fresh salad using tomatoes and peppers out of the garden, chopped really fine, and he was able to eat all of it without a problem. He's responding well to yes and no questions and, as Betsy said, showing such consistent improvement that it's really exciting to watch.
Thank you so much for your support, your healing prayers and your thoughts of Ross throughout the day. I know he's got to be drawing on your energy--it's amazing what a powerful support group this terrific young man has! Thank you so much.
August 18, 2004 9:00 PM--Ross had an appointment with the orthopedist this morning. The doctor said surgery on his elbow should be covered by Medi-Cal and suggested that the Dillons wait until Ross has had the Botox shot before moving ahead with the surgery. There is a slight possibility that the Botox will loosen his biceps up enough that he won't need the operation to free his elbow, so everything has been put off for a couple months. Ross is scheduled for the Botox shot on September 17.
Part of Ross's exam today was to check for muscle strength in his right arm. It's very good, according to the doctor, which is a necessity if he's going to go ahead with the operation. Overall, Ross had a really good day today and was very alert and aware while in the doctor's office.
He looks good and continues to do well. Thank you so much for your prayers and your healing thoughts for Ross and his loved ones.
August 17, 2004 9:45 PM--Betsy said Ross's day today was even better than yesterday. He continues to improve, though the congestion did appear to slow him down some this morning, especially when he had his session on the standing frame. However, he had an appointment with his neurologist who is going to check into alternative anti-seizure medications for Ross, hopefully to find something that won't be as sedating. Betsy said they're still not sure what causes the seizures, though the doctor said Ross's are not as bad as many patients with similar injuries have to deal with .
After his appointment, while Betsy was dealing with the paperwork, Rusty got Ross out to the van and was lowering the ramp from inside. Ross was paying close attention, and Rusty made some comment about the advances in technology. Ross nodded in agreement, so he was definitely paying attention.
Betsy said Ross is also moving his right arm a lot more. Today he rubbed his nose--it required him bending his head down and reaching up, but it was a first for him. He also took a tissue that Betsy handed to him and raised it to his face.
Tomorrow morning at 8:30 he's got an appointment with the orthopedist about surgery on his elbow. It was badly dislocated during his original accident and never put in a cast, so every time Ross was taken in for X-rays, the technicians dislocated it again. Hopefully, arthoscopic surgery will be able to correct the problems he's got now from the constant re-injuring of the joint.
Please keep Ross and his loved ones in your thoughts and prayers. He continues to show improvement, and though his progress is very slow, it's always forward.
August 16, 2004 9:30 PM--Once again, a seizure appears to instigate more healing and advances for Ross. Though he did have two choking episodes today, which he managed to get through on his own, Ross also showed a lot more coordination and physical ability than he has in the past. Betsy said that at one point he was slumped over in his chair and she asked him if he could right himself. He was able to straighten up and move into a more comfortable position on his own. Betsy said he's definitely getting more control as well as strength in his muscles, and his improved coordination was evident when Betsy got a ball out and Ross was able to kick it back to her on consecutive returns for about fifteen minutes. She said he's chewing and swallowing better, and seems really close to talking. He even mouthed, "Hi, Mama," to her, though he still hasn't mastered sound. It's coming. He's getting stronger and healing more all the time. Thank you, everyone, for your prayers, your healing thoughts and your support for Ross throughout this long recovery.
August 15, 2004 9:50 PM--Ross had a four minute seizure last night and a much shorter one this morning. His doctor had reduced his Tegretol last week, so whether or not that is the cause is debatable. He doesn't seem to have any lasting effects, however, and had a good day today. Betsy said he has had a few moments where his expression told her he was trying to figure stuff out, as if he had a greater understanding of what was going on around him, but still didn't entirely understand.
Overall, though, he's doing really great and constantly moving forward.
August 12, 2004 9:30 PM--Just talked to Betsy and she is so frustrated! Ross was scheduled to go into Stanford tomorrow for the Botox injections to help his tight muscles but the distributor really screwed up. They refused to deliver the medication to the pharmacy in Sonoma any sooner than one hour before the injection was to take place, but the problem is, the hospital at Stanford where the doctor is going to do the injection is a two and a half hour drive away. What's even worse, Botox has a 90 day shelf life...it's not like a couple of hours is going to make a difference. Betsy said the pharmacist did all he could to try and get the medication in a timely fashion but to no avail. Hopefully, by the time Ross's appointment next month comes around, they'll have discovered someone who actually thinks who can get the medication to the pharmacy in time.
It's bad enough when you're dealing with a patient as severely injured as Ross has been, but to have to climb over stumbling blocks thrown in your path seems patently unfair.
Okay, so that's a bit of editorializing on my part, but I can't help but feel Ross's parents' frustration when they work so hard to help him and issues like this--which shouldn't BE issues--occur.
However, Ross is unaware of the problem and had an excellent day today. He slept through the night and then had a terrific session in the standing frame. He ate his dinner while standing and Betsy said that when she showed him a new toothbrush she got for him, he took it in his hand and put it in his mouth to try and brush his teeth. She said his focus and alertness is wonderful, and Betsy gives a lot of the credit to the visit to the osteopath. Her work with Ross really seems to make a difference.
In fact, so many people have made a difference in Ross's life since his accident. Thank you, all of you, for your support and healing thoughts and prayers for Ross and his family.
August 10, 2004 9:45 PM--Ross had a really full day today, starting with a terrific standing frame session. Rusty said that he's getting more familiar with the way this particular frame works and is able to better to adjust it to meet Ross's needs. Ross spent about an hour standing in it this morning with a short break--he also managed to eat an entire meal while in the frame. There was a problem finding the right kind of shoes for him to wear while in it, but Rusty said they finally ended up with some old flip flops that worked perfectly.
They also made a trip to see Dr. Tobin, the cranial osteopath, today. She does very gentle work on his spine but Rusty said the effect on Ross is amazing. He really responds to her manipulations and has much better movement after a session with the doctor. Rusty noted today that he had a lot more motion in his right arm than he's had in the past. After the visit, they took him home and he got a short rest, then was up working on the pedals for awhile. He also spent time in his wheelchair with the plastic cone on the tray. Rusty said he was able to knock it off on command. Before, when they did this, it was much more difficult for Ross, but today he had no problem. At one point Rusty said they put the cone on the left side of the tray, expecting Ross to knock it off with his left hand. Instead, he tried reaching all the way around with his right to try an and hit it. Rusty said to Ross, "You're almost touching it."
He said Ross nodded, and mouthed the words, "Ya, Ya..." as if agreeing.
All in all it was a great day today. On a personal note, I talk to Ross' s parents almost every night to update the website. I can always feel more energy in the conversation when Ross has had an exceptional day, and I had that feeling tonight, talking with both Rusty and Betsy. His progress continues to amaze all of us--he's not a quitter. Ross continues to heal, continues to do more for himself every day. Thank you all, so much, for your support, for your healing thoughts and prayers. Days like this tell all of us Ross is beating all the odds.
August 9, 2004 10:00 PM--Work on the standing frame really seems to jump start a lot of things for Ross. Betsy said he had a terrific day including his visit with Dr.Swain, the speech pathologist. She said Ross was showing amazing improvement, especially with his ability to chew. He's very alert and is beginning a new therapy program that utilizes classical music via earplugs, delivered in a manner that helps the brain organize in specific ways.
The recordings are set up so that different things are coming into each ear. Betsy said it's one more thing to add to their daily schedule, but she's really confident it will help.
Ross had his dinner tonight while in the standing frame. He had some lab work today that showed he had low sodium levels and was also low on chloride, so Betsy said they've cut back on his Tegretol to see if that will help.
A definite first tonight was when Ross allowed Betsy to brush his teeth with the electric toothbrush. In the past he's had trouble keeping his mouth open for her to do it, but tonight was great. He opened his mouth and was able to hold it open. The next step, hopefully, will be getting his elbow fixed, and then Betsy said she really expects to see some changes.
Thank you so much for your healing thoughts, your prayers and support of Ross and his loved ones over the past two years.
August 8, 2004 9:16 PM--Ross has had a really good weekend. One thing that is a new "action" is that he repeatedly knocked the dog's toy "kong" off the wheelchair tray so that Josie could fetch it. I asked Betsy what Ross's reaction was to the dog bringing it back and she said he seemed to expect it. Betsy said they're also working with him on reaching out to grab or touch things and he's showing a lot of improvement. His appointment with Stanford is on Friday where he's supposed to get the first of the Botox injections that should further loosen up the tight muscles in his hand, but he's already showing more movement in his elbow than he's had in the past.
A friend dropped by today who hadn't been there for quite some time. Betsy said Ross refused to look at him. When Betsy asked Ross if he was feeling shy, he nodded his head yes. He's understanding and responding so much better--he's also drinking fluids much easier and was able to drink a lot of water today. Betsy said she's really excited by how well he's doing.
Rusty finally figured out how to use Ross's wheelchair with the standing frame which will make it much easier for them. It requires lifting the front up and over the framework at the bottom, but once over the bar the chair fits just fine.
They have a new man helping on Sunday nights now, which gives Jeremiah a break. So far everything is working just fine. Please remember Ross and his loved ones in your prayers, especially on Friday when they make the trip to Stanford for the injections. Thank you so much for your support, concern and well wishes for Ross and his family.
August 6, 2004 9:19 AM--Ross is doing just awesome, according to Betsy. She said he's able to sit in a straight-backed dining room chair without leaning or wobbling, and they've got him eating his meals while in the standing frame. Standing, the movements of eating and balancing really seem to get his neurons firing--the combination of so many different actions have a definite impact on his overall alertness and coordination.
Betsy said the goal is to have him eat all his meals while standing. He still has the stomach feeding tube in, but it's used mostly to keep his fluid levels up. Drinking fluids is still difficult for him without some choking, though Betsy said he's getting better every day. Hopefully they'll be able to remove the feeding tube before much longer.
She said they're tying a lot of his "slump" in achievements over the past couple weeks to the loss of the original standing frame, as he's once again showing more rapid improvement. Overall, he's looking great.
Thanks again to all of you for keeping Ross and his loved ones in your thoughts and prayers.
August 4, 2004 9:55 PM--Ross did beautifully in the standing frame today. Betsy said she even celebrated with a bit of chocolate sauce, something that is NOT on Ross's diet, but which he loves. She also said he was able to sit in a dining room chair without any problem at all...just a few months ago he wasn't able to hold himself upright in the chair on his own, so his upper body strength and trunk control has definitely improved. He's still got a small amount of jerking in his arms, but it's getting better. He goes in on August 13 for the Botox injections in the muscles, so it will be really interesting to see how well that helps.
He's definitely doing better. Thank you all for your healing thoughts and prayers for Ross and his loved ones.
August 3, 2004 9:45 PM--Betsy said Ross did just fine today though he was still jerking his arms. She discontinued an over the counter antihistamine he's been taking as it can stimulate the central nervous system and is hoping that will help. Ross had acupuncture today and appeared to really benefit from it. Betsy was convinced he must have had a bad headache before going in, as he didn't seem to feel well at all and wasn't focusing well.
They're still trying to get the standing frame adjusted just right, though Ross had a good session in it today. The big problem is the fact his wheelchair is just a fraction too large to fit within the frame, so they're looking for one a little narrower to use with it. The chair can't measure anymore than 22.75" and Ross's is larger than that.
Tonight Betsy admitted that they were all tired and felt as if they were on overload. Caring for Ross is exhausting work, and though the rewards are great, the body occasionally needs rest. Thank you so much for your prayers for Ross and his family as well. You are a powerful part of his recovery and their ability to continue this amazing level of care.
August 2, 2004 9:45 PM--Betsy said Ross's arm jerking has eased quite a bit. It began just before his seizure on Saturday, but they've adjusted his medications and he's much better. Betsy believes he's experiencing pain a lot of the time lately, and after some Advil today he did appear to feel much better. He's getting a lot of movement out of his right arm, moving it on command, though it's definitely "gross motor control" as his elbow still won't bend. Still, Ross continues to improve and do more each day. Thank you so much for your healing thoughts and prayers.
August 1, 2004 9:00 PM--Betsy said Ross had a two minute seizure last night, but doesn't seem to have any residual effects from it. Lisa, the nurse who was with him at the time, gave him some Advil and more again this morning. He's very alert and appears to be responding well to conversation and activities around him. Our son Jon and his brother-in-law Cody visited for a bit today and Betsy said Ross really paid attention to Jon. We were wondering just how much Ross remembers of their friendship. As Betsy said, we won't really know until Ross starts talking, and he seems really close.
The standing frame arrived on Friday. It's a bit narrow and the wheelchair doesn't fit in it like they'd hoped, but Rusty said he thinks it's an adjustment that can be made with a few washers as the difference is barely an inch.
Betsy told me she dreamed this morning that Ross was standing and speaking. I'm keeping my fingers crossed that her dream is a foreshadowing of what's to come. Thank you all for your healing thoughts and prayers for Ross's recovery.
July 28, 2004 10:30 PM--Betsy said Ross had another good day today. He's following instructions and spending more time watching TV and really paying attention to the programs. The cool thing about following instructions is that today he actually did it when the physical therapist was there. She asked him to move his hand toward her and then away, which he did. She was really surprised, though it's not a new thing for him. As Betsy said, THEY knew he could follow instructions, he just doesn't always choose to do it for the therapists who are watching him!
Ross continues to progress with lots of little steps forward, but the important thing is that it IS forward. Thank you so much for your support, for your healing prayers and thoughts of Ross during this very long recovery.
July 27, 2004 9:45 PM--Ross is doing well today. His physical therapy session this morning was really great. He's able to sit on the side of the bed and feed himself, shift his weight from side to side without falling and can move his body around without help. He has someone behind him in case he gets off balance, but is essentially able to hold himself erect without help. Betsy said they're really glad the standing frame is due to arrive on Friday, as it's obvious Ross's previous sessions in the frame have helped him develop his upper body strength and improved his ability to sit upright without assistance.
When he is sitting in his chair, his feet are no longer strapped into place. He's able to move his feet about, occasionally crosses his legs or raises them to rest on a foot stool or chair. Although these might seem like fairly simple maneuvers, they are movements he was unable to make just a few months ago. He's definitely come a long way.
Thank you so much for your prayers, your healing thoughts and your amazing support.
July 26, 2004 9:30 PM--Ross is doing fine today. Moving his arm toward items of interest, eating well and generally having a really good day. His speech pathology appointment was canceled but he did get in a visit to the chiropractor. He's also finally set up with an appointment to see an orthopedist before his final insurance benefits run out on October 4 -- Medicare won't start for another 2-3 months, so Betsy said they're just praying that there aren't any problems during that period. Few doctors will even accept Medical patients because the payments for service are so poor, if at all.
As much as Ross has improved, he still has so far to go. Please remember him and his loved ones in your thoughts and prayers. Thank you so much for your support over his long period of recovery.
July 25, 2004 9:15 PM--Ross is doing really well. He had a visit on Friday with a cranial osteopath--the appointment was to have her take a look as his hand to see if she could help. Betsy new she was an osteopath, but had no idea what her specialty was. Betsy said they really liked her, she took a very complete history and then told Ross she would help him with his headaches.
Betsy said she frequently asks Ross if he's having pain, but she's not been able to isolate where/what was bothering him. She said that after the doctor worked on Ross for awhile, he seemed much more relaxed than usual and looked really great, which tells Betsy he probably has been having painful headaches. According to the doctor, they're very common with head injury patients, so it was really nice to see Ross reacting to her treatments so favorably.
He had a good weekend, watched the Tour quite a bit and seemed to be very involved in the racing. He's doing more for himself all the time, for instance feeding himself and righting himself when he slips to one side, especially in the car. Betsy said they've been told to concentrate on "above the waist" activities, as that will help fire the neurons that speed other parts of his recovery and hopefully will help him to talk. Betsy said he's definitely mouthing words, but not getting any sound.
The standing frame they've purchased will be shipped tomorrow from Texas by UPS. Betsy said they're really looking forward to its arrival as it's obviously something Ross really needs and does very well with.
Ross continues to show improvement, taking more steps forward than back. A friend of Betsy's was here visiting this weekend and she hadn't seen Ross since Easter...she was amazed by his progress.
Thank you, everyone, for your steadfast support and your healing prayers and thoughts for Ross.
July 22, 2004 9:15 PM--When I talked to Betsy tonight, the first thing she said was, "Ross continues to astound us." As an example, she said they told the occupational therapist about Ross moving the beach ball around with his feet and the OT tried to get tried to get him to do it for her. He was tired and not willing, so the OT asked Ross if he would "touch it." He leaned over and very carefully touched the ball with his head. As Betsy said, not only did he follow the instructions, but he did it with typical "Ross humor." Tonight he watched the Tour de France on OLN and Betsy said he had a big grin on his face while he was watching the race.
Our son Jon and his wife Melanie stopped by to visit, and Betsy said Ross watched them very carefully, and again he had a big smile on his face. He seems to be more aware, more involved every day in the world around him.
Betsy said she gave him some tomato juice today and he really liked that. He wasn't as congested today, though he's still got some trouble with sinus problems. At least it's not as bad as it has been.
Ross is managing to do thing doctors said he'd never be able to accomplish. There's no limit to what he'll achieve, but with your continuing support and prayers, nothing is impossible.
July 21, 2004 10:15 PM--Just a brief update to let you know that Ross is doing well. He woke up tired but seemed to come to life once they had him in the car and headed to his doctor's appointment. He appears to really thrive on the mental stimulation of going away from the house, of new surroundings. He did really well at his visit with the neurologist. Betsy said Ross seems to be ready to talk.
Thank you so much for your continuing support and your healing prayers for Ross and his family.
July 20, 2004 9:30 PM--Ross had a pretty good day today, though he was still congested. Betsy said they saw an "ear, nose and throat" doctor who said everything is fine and he was really impressed with how well Ross was doing. He prescribed some "anti-reflux" meds, since that can be a problem with all the sinus drainage Ross is dealing with, and he wants to avoid future problems.
It's been a really busy week and this morning Ross DID NOT want to wake up, but Betsy said they got him up on schedule anyway and he was pretty grumpy. In a way, though, that's good, as he's starting to express how he feels. Cognitively, though, Betsy said he was doing great.
Tomorrow he sees a neurologist and has acupuncture. Also will be visiting an osteopath regarding his spasticity and they'll be checking on the need for surgery to deal with the boney growths in his elbow, a result of his injury.
As Betsy said, they have a wonderful team of physicians working with Ross...as well as an amazing support group. Thank you, all of you, for your support and your healing prayers for Ross and his loved ones.
July 19, 2004 9:45 PM--Ross had a really good day today. He had a visit with the chiropractor and while they were waiting, Betsy put a little "blow up" beach ball on his tray for him to hit. He was bumping it around when the chiropractor came out and watched, then had him put it on the table where he could hit it. The position was wrong for Ross's "frozen" elbow, but he moved it around and adjusted his arm until he could hit it off the table. The chiropractor was definitely impressed because of the thought processes involved in the action.
Ross is also answering questions with the nod of his head and seems to be really trying to communicate. Betsy asked if his problems with speech had to do with the movement of air over his vocal chords, but the doctor seemed to think it was more a problem with his neurons not yet connecting and firing in a normal fashion. The doctor said he needs to do more upper body exercises to help speed his recovery. Betsy said she really appreciates the doctor's advice, as he appears to be very in tune with current discoveries on recovery.
Ross continues to defy the odds. Thank you so much for your continuing support and your prayers and healing thoughts for Ross.
July 18, 2004 8:50 PM--Betsy said Ross is doing really well. He's communicating much better, nodding his head for "yes" and "no" replies and is able to make his needs known. He's trying to speak, but Betsy said it appears to be air control that's holding up his speech. In the meantime, he's looking great, is very alert and cognizant of what is going on around him, feeding himself really well, drinking un-thickened liquids without choking and seems to be feeling great. If he wants something, he's able to make his needs known by looking at the object and he continues to show improvement every day.
His appointment for his Botox injections in his biceps and finger extensors is on August 13. Betsy will have to pick up the Botox and take it with her...because the drug has a very short shelf life and is quite expensive ($500 for a vial) the hospital doesn't keep it in stock.
Please keep Ross in your thoughts and prayers. Thank you so much for your continuing support and your really wonderful notes in Ross's guestbook. They mean so much to Ross and his family, just the knowledge that you are still there, still holding the good thought.
July 14, 2004 9:00 PM--Ross made the trip to Stanford just fine today. They left early, just after 7:00 a.m. Ross wasn't able to get the Botox injections because the hospital doesn't keep the stuff on hand, but he was approved for them and Betsy got a prescription she'll be able to fill and then take back to Stanford when Ross has his next appointment on August 13--sooner, if a cancellation opens one up.
The big concern now is a standing frame. If anyone knows of an agency that might rent them, please let Betsy know, as the owners will be picking up the one Ross is using now, this weekend.
I asked Betsy how Ross did today and she said he did great. He looked the doctor straight in the eye when he was talking to Ross and remained very alert and attentive throughout the visit. He's definitely improved so much over the past few weeks.
I'll update again on Sunday night. Thank you, everyone, for your thoughts and prayers and your support of Ross and his loved ones.
July 13, 2004 8:40 PM--Ross is doing great and feeling much better. When I called a few minutes ago, Betsy said he'd just finished off a full cup of juice through a straw. He also spent an entire hour working on the pedals, the longest he's ever done them, and Jeremiah said Ross really was working hard.
He'd also had an excellent session on the standing frame, an implement he's probably going to lose at the end of the week when the owner reclaims it. Their generosity has been much appreciated...Ross's parents now know for certain just how useful the standing frame is to his rehabilitation. Betsy said they're trying to find a used one they can buy, but they need to replace this one as soon as possible so they don't lose any of the gains Ross has made.
Tomorrow morning Ross goes to the Stanford clinic where the doctor will evaluate him for possible use of Botox to relax the tense muscles in his right arm and hand. It's going to be a very long day, but I'll be sure to have an update by evening. Please keep the good thought for Ross and his family and keep all of them in your thoughts and prayers.
July 12, 2004 9:45 PM--Ross is feeling a lot better today, which is a good thing as he had a really busy day. Betsy took him to the chiropractor and then to the speech pathologist, and from their to the neurologist's office to have prescription refilled. Betsy said Ross looks good and is really alert, he's able to hold himself in position in the car without having his legs strapped down, and he's swallowing well. He also let his mom brush his teeth thoroughly, though she said she had to bribe him with quarters! At least it worked!
Betsy said he's looking amazingly well and is very alert and aware of what it going on around him all the time. He's definitely showing a lot of improvement.
Thank you, everyone, for your prayers and healing thoughts and your wonderful notes to Ross's guestbook. You have been an amazing source of inspiration.
July 11, 2004 9:00 PM--Betsy said Ross has had sort of an "up and down" few days. He was feeling better and then she made him some goat's milk yogurt, culturing it for 30 hours so it should have been fine, but it really upset his stomach again. She's decided all dairy is out for now. At least the visit to the hand surgery clinic at Stanford went well. It was a long day. They had to leave at 10:00 a.m. in order to make a 1:00 p.m. appointment, so Ross was pretty tense and tired by the time the doctor saw him. The doctor said surgery is a last resort, so he's referred Ross to another physician who uses Botox to relax the muscles that cause the tension. Ross might be a candidate for Botox shots for his shoulder, arm and hand, but Betsy said they won't find out until his appointment on Wednesday. That one is at 10:00 a.m. which means they'll need to leave at 7:00. It makes for a very long day.
In spite of his discomfort and stomach upsets, Ross has had some terrific sessions on the standing frame, which is why it's imperative that the Dillons find one as soon as possible in order to continue the work on it. Overall, Ross continues to be more alert and capable of doing more for himself. He's drinking out of a cup much better and Betsy said they are no longer adding any thickener to his liquids. They're making Ross answer "yes" and "no" questions with a shake of his head and working at including him in as much as possible. He continues to respond better and also to move his right arm more, as if he's trying to reach for things, and Betsy said his level of alertness increases each day.
Thank you so much for your continued support and your healing thoughts and prayers.
July 7, 2004--Ross is feeling better and Betsy thinks the changed diet is helping. He had his best standing frame session ever today and was able to shift his weight from one foot to the other, which is definitely a precursor to walking. He also seems even more alert than usual.
Tomorrow is the trip to Stanford to the "hand" clinic to see if they can do anything to increase the functionality of Ross's right hand. I will report back on Sunday night to let you know how the appointment goes, but have to be away this weekend.
Please keep Ross in your thoughts and prayers, especially on the long drive tomorrow. This is another important step in his recovery.
July 6, 2004--Betsy said Ross seemed to be feeling better today, and so far he's adapting to his new diet, even though his favorite foods aren't on the list. Betsy's making a lot of new recipes. She said the diet definitely takes away all the goodies, but it's worth it if Ross starts to feel better. She's looking for a source of goat's milk so she can make yogurt. I was teasing her about raising her own goats.
Today Betsy bought Ross some sandals and said she brought them home and tried slipping them on his feet without saying anything. He didn't like it a bit and kept moving his feet away. So, Betsy asked if she could put the sandals on him and he nodded his head in the affirmative and let her try them on him. Obviously, Ross is growing more aware every day of what is going on around him and what people are doing to him. Definitely a good sign.
His physical therapist also said today was the best session Ross has had yet in the standing frame. He was able to move about, adjust his weight and balance himself much better than he's done before.
He has his appointment with the Stanford Hand Clinic on Thursday. Please hold the good thought for Ross, keep him and his loved ones in your thoughts and prayers.
July 5, 2004--Betsy sent the following note for an update: "Ross is okay. He has been tired, jerking and toney in his limbs. We have also been dealing with intestinal distress. However on Saturday and Sunday, it became more troublesome. He also had a petit mal seizure lasting about 3 minutes on Saturday evening that was very different from other seizures. Ross was alert during the whole time and it seemed to only involve his mouth and at the end, his eyes started flickering.
"I have put him back on the Carbohydrate Specific Diet, and in rereading the CSD, it seems that all of the above symptoms could be related to his distressed intestinal tract. The diet means no grains, no sugars except honey, no chocolate, no soy, and no potatoes of any kind, plus no starch fillers like tapioca, agar, etc. I think the problem may have started with the increased dosage of Keppra and then has gotten worse. So far today, he seems to be feeling better. Through all this, he seems more here with us and cognitively interactive. We are insisting that he respond to our questions. He also seems to be getting annoyed when we do something without asking him first. All great signs of continued improvement."
When I talked to Betsy this afternoon, she described Ross's "cognitive interaction" as the ability to follow instructions much better than in the past. For instance, when he moves his foot off the foot rest of his wheelchair and she needs for him to put it back to wheel him through doorways, Betsy said she just has to tell Ross to put his foot back on the rest and he does it. She did say his awareness comes with a price, as he definitely appears to be sad.
Thank you so much for your continuing support, your kind thoughts and healing prayers for Ross's eventual recovery.
June 30, 2004 9:20 PM--There is definitely something in the air that's causing a lot of congestion for Ross. Betsy said he seemed really tired today, which is typical when he's having trouble with allergies. Still, he continues to work hard at kicking the ball, working with a pencil and paper (it has a large rubber grip to make it easier for him to hold) and using a game of pegs the occupational therapist brought for him. Betsy said Ross shows a lot of interest in things he can do that require movement and coordination. He's also getting better at communicating his needs, though he's not speaking out loud yet.
Hopefully the air will be clearer and he'll be able to breathe easier. In the meantime, thank you all for your thoughts and prayers, and your wonderful perseverance during Ross's long recovery.
June 29, 2004 9:30 PM--Betsy said Ross was tired today and still really congested. We've had a lot of wind and the air is definitely dirty--there's a brown haze over all the valleys and I'm sure that's got to be affecting his allergies. Ross had a chiropractic visit this afternoon. While he was waiting for his appointment, Jeremiah took Ross's dark glasses off and set them on a table nearby. Ross made a definite movement as if to reach for them. He did the same thing later when Jeremiah moved the glasses, as if he was really concerned about where they were being left!
He's showing more control of his hands and feet all the time, is more alert and aware of his surroundings, and seems to be engaged in what is happening around him. He's been moving his right leg in a very purposeful manner, as if he's exercising it and testing the amount of control he has over his muscles.
It's such a terribly difficult struggle, over two years post-accident, but Ross continues to defy the odds by showing constant progress and improvement. Thank you so much for your prayers and healing thoughts and your unwavering support. You are more important to his recovery than you can possibly imagine.
June 27, 2004 8:40 PM--First of all, my apologies for such a long period between updates, but I'm working out of the area for part of each week and unable to access the website to post updates. I just got off the phone with Betsy and Ross continues to show improvement on a daily basis. One of the steps towards speech is the ability to force air out over the vocal chords. Betsy tried giving Ross a small party favor, the kind where you blow into it and make the milar streamers move. She said he understood what she was trying to get him to do and worked really hard at exhaling with enough force to move the streamers until he could do it. Not only does it show that he's capable of the action, but also that cognitively, he understands the instructions.
Ross has an appointment coming up in early July with the Stanford hand clinic to work on his right hand, which wants to roll up in a tight ball. Betsy said she was able to spread his fingers out and get them into a splint, but hopes the clinic will be able to use Botox injections to relax the muscles enough that Ross can finally get his hand straightened out. He's also going to need surgery on his elbow to remove the calcium deposits and bony growths that are a result of his original accident.
(note from Betsy: Small point about Ross's hand. When Ross came home a year ago, the issue was to keep his hand from being contracted into a ball or fist. Now, his hand has relaxed considerably except for the mp joint of the 2nd and 3rd digits of the right hand. That is what I was able to extend last weekend, and we are hoping that Botox injections would relax those two digits so we can splint it in a functional position.)
Ross is beginning to enjoy every bit of independence he's mastered. Yesterday when his nurse was trying to feed him, he was really unhappy with the process, even though it was late in the day after a lot of hard work and everyone thought he might be too tired to do it for himself. Once he had the spoon in his hand, he was fine. He wants to do whatever he can for himself.
Betsy said he continues to have great sessions in the standing frame and is doing better each day. They're almost all small steps, but very important to his final recovery. Your support is an amazing source of strength to Ross and his entire family. Thank you so much for your prayers and healing thoughts.
June 23, 2004 8:30 PM--Joanna is a physical therapist who works with Ross. Her services are paid for by his insurance policy. In order to continue working with him, she must be re-certified every two months, which requires setting goals and meeting them within a particular time frame. Joanna is the one who suggested Ross have a standing frame and today was the first day for her to work with him while using it. They put Ross in the standing frame and he was bearing his own weight and shifting his feet to balance himself. Joanna was absolutely amazed--those two actions met her goals for Ross for the entire two month period yet to come! She has told Betsy and Rusty that Ross's improvements, so long "post accident," are practically unheard of.
He continues to improve at an amazing rate. Later in the day, Lisa put him on the mat for exercises. She set the ball up so he could kick it, but he actually was reaching for it with his right arm. Ross's elbow is still frozen because of a bony overgrowth from his accident, but Betsy said Ross spent almost an hour reaching for the ball and trying to hit it with a toy sword. As Jeremy, another of his PTs said, you have to set up the proper environment, and the rest is up to Ross. Obviously, he has no intention of quitting.
Thank goodness you haven't either. Thank you, everyone, for your continuing support, your healing thoughts and prayers for Ross's continuing recovery.
June 22, 2004 10:00 PM--When I called tonight, Betsy said it was Rusty's birthday and Ariel was cooking a special dinner. Ross had a really good day--Jeremy was there for the first time since Ross had gotten the standing frame, and was able to show them all a few things about using it. Ross still needs some special splints for his legs in order to use it properly, but he's doing great.
Betsy said he's been really good about opening his mouth wide for her to brush his teeth. He used to fight it until she tried bribing him...now we know he can be bought! Betsy said she tells him she'll pay him if he'll open his mouth wide and he does it every time.
Ross is able to do so many things now that he couldn't just a few weeks ago. His improvement continues, with much thanks to all of you and your healing thoughts and prayers. Thank you.
June 21, 2004 9:40 PM--Betsy said today was really busy, with a visit to the chiropractic neurologist and the speech therapist. Rusty has some time off this week, so he was able to go with them, and it's the first time in awhile that he's driven the car with Ross as a passenger. Betsy said he was really surprised at how much better Ross is doing riding and holding his body steady and his head up.
He did really well with the speech therapist and was able to stick his tongue out well beyond his lips. The next step is to learn to blow air out of his mouth, which takes him a step closer to speech. Betsy said he's definitely trying to talk, moving his mouth and tongue, but still has a way to go.
They continue to learn all the ins and outs of the standing frame, but Ross is doing really well in it. His improvement is steady and across the board in just about everything they've worked on with him. Thank you so much for your thoughts and prayers and your continuing support.
June 20, 2004 8:30 PM--Betsy emailed an update for the site:
Ross is doing well. He has been coughing a lot today, but it seems productive.
We have a standing frame-it is wonderful and exactly what we need. We put Ross into it yesterday, asked him to lift his head and he stood up right with his head raised. All of that work on the tilt table and the edge of the bed has prepared him. They used to put him in the standing frame at Kentfield and he could only stand with lots of support. This was completely different. Our heartfelt thanks to Marti who referred us to Dennis and Cathy. Thank you so much.
Betsy said she couldn't get over the difference in Ross's abilities since the last time he was in a standing frame while at Kentfield, where it took two men behind him to help hold him up, and Betsy in front holding his feet in place. Today when he was in the frame, she asked him to hold his head up and he straightened his entire body on his own. He's definitely showing a lot of improvement.
Thank you, everyone, for your kindness and generosity, your healing thoughts and prayers for Ross's recovery.
June 17, 2004 9:00 PM--Ross is smiling a lot more now. Betsy said it's definitely a response to what's going on around him or what people say to him. He started a few days ago and it's become a regular thing now. He's very close to talking. Even the neologist he sees believes it won't be long. It's like Ross is just teetering on the edge of so many things. He's more involved in what's going on around him, participating more, helping more, for instance, when he's being transferred from his bed to his wheelchair. I keep getting this image of all his brain cells that were so badly injured slowly reconnecting, of neurons firing and stuff finally connecting and making sense for him. Now, more than ever, Ross needs your prayers and healing thoughts. Thank you all so much for your continuing support.
June 16, 2004 9:00 PM--I just talked to Betsy and got a short update. She's got a house full of guests--it's Ariel's birthday and a group of her friends are there, as well as Ross's friends Adam, Ashley, Jon and Mel on their way back from Santa Barbara and Ashley's college graduation. Betsy said they're really enjoying the crowd and all the activity and energy, and Ross is especially alert and aware with his friends there.
Betsy was telling me that the physical therapist whose services are covered by insurance told Betsy that when she turned in her report, her supervisor questioned the amount of improvement she noted Ross was showing in the current billing period. His abilities are really surprising everyone now and he appears to be improving in bigger steps than ever before.
As Betsy said, there's something different about him, especially in the past two days, as if he's more focused and aware of the world around him. It's an exciting and very hopeful time, and so gratifying, to know that even now, two years "post accident," Ross is still recovering at a rate that is really noticeable.
June 15, 2004 9:30 PM--It was a really busy day today. Betsy said they had to wake Ross up for physical therapy this morning, which lasted from 9-10:00. He had a great session, then Betsy's friend Patricia gave him a good hand massage before the occupational therapist came to work with him from 10-11:00. He spent that hour holding a pencil, making circles and moving hi s hand around. After lunch Betsy said he got about a half hour nap, then they were off to the acupuncturist, which took up the rest of the afternoon. When I called tonight, the family was out on the deck enjoying the last of the evening and hoping the mosquitoes wouldn't find them. Rusty said Ross was moving his leg around and generally keeping busy. He may have had a petit mal seizure this evening. Betsy said he stared into the distance for a bit, a sign of a small seizure, but she really wasn't sure. Possibly he's just discovering new connections as his mind heals.
Ross had a visitor tonight, a gentleman from Brazil who had heard about Ross through one of Ross's physical therapists. Betsy said they thoroughly enjoyed the visit and Ross was particularly alert and aware tonight. As busy as his day was, she said he was very focused and just seemed to have it all "more together." Ross continues to show improvement on a daily basis. It's a long journey, but one that continues.
Dr. Ed Cooper sent me a website about a young couple injured in a car accident in Utah. <www.tarajosh.com> From their site, I found another that deals with brain injury. It's absolutely riveting to read the letters written by brain injured patients who have recovered from the worst of their injuries. You can access the site at www.waiting.com . It's filled with the kind of information I wish Betsy and Rusty could have accessed when Ross was first hurt. There is so much you don't know when a loved one is badly injured, things that could make the outcome so different. I was really impressed with the wealth of information on the site.
Please continue to keep Ross and his loved ones in your thoughts and prayers.
June 14, 2004 8:20 PM--Got an email update from Betsy so will post that. I imagine she's heading for bed early tonight after a long and busy day. I can't imagine the effort she puts out every day in caring for Ross...it's got to be so exhausting, even when there is help available, which isn't all the time. Here's Betsy's note:
Kate,
It has been a long day, so I am sending the update before I become incoherent. Ross was awake until almost 1 AM last night. As a result, he has been tired today. He is also very congested. Speech therapy went great today. The speech pathologist was excited about the progress he has made in one week, and she told Ross that such great progress in one week was very unusual. Even though he was tired, he worked very hard and was exhausted at the end of the session.
He had a nice nap when we came home, pedaled for a while, had dinner and is now getting a hand massage from our dear friend Patricia. He is really responding to requests and is very attentive.
Betsy
As always, please remember Ross and his loved ones in your thoughts and prayers. Thank you so much for your support.
June 13, 2004 9:00 PM--Just talked to Betsy and she said Ross is doing well, though he was a little tired tonight. They're increasing one of his anti-seizure meds (Kepra) which could be causing it. He continues to improve and is looking really good and responding well to commands and questions with "yes/no" nods of his head.
Ross continues to defy the odds. He is improving, albeit slowly, but whatever steps he takes are not forgotten, and they're available for him to build on. Thank you, all of you, for your prayers, your healing thoughts and your stubborness...sometimes I think that a stubborn belief that everything will work out is the most important human characteristic we share. The cool thing about it is, it's often the right approach. Ross continues to improve. We believe he will recover...ergo, it's going to happen, sooner than later! Thank you!
June 9, 2004 9:30 PM--Ross had another good day that included a visit from the physical therapist who does the required evaluation for Ross's insurance coverage recertification. She was very impressed with his achievements and said it was obvious what he's doing is volitional, not reflex. Ross was able to roll over and back on the mat and also feed himself. As his dad said, right now, for Ross, it's all about the food! He is able to stick his tongue out to lick his lips and is eating "chunkier" foods, things he couldn't do even a couple of weeks ago. He's definitely more alert and improving all the time.
June 8, 2004 9:00 PM--Betsy said Ross is doing well. He's showing more alertness, which is really wonderful. Even the doctor he saw today noticed it. He's obviously trying to do more things, especially trying to talk, and he's handling travel really well to and from the various appointments Betsy has to take him to. She said he does appear to be more solemn. Today Betsy was massaging his hand and she said he got a very quizzical expression on his face, as if he doesn't quite understand what's going on.
Please keep Ross in your thoughts and prayers as he continues this long journey of recovery. He's taking many small steps, but they're all cumulative and leading him toward a much larger goal.
June 7. 2004 9:20 PM--Just talked to Betsy and she said Ross had a terrific day. The biggest thing was the fact he was able to stick his tongue out beyond his teeth for the first time, an important precursor to speech. He licked his lips more than once while eating. He also had a doctor's appointment, and the doctor was very pleased with his ability to drink through a straw and to swallow. She told Betsy someone should write up Ross's progress for a medical journal, because common belief for brain injured patients is that most recovery occurs within the first six months. The fact that Ross is still showing improvement two years post injury is nothing short of phenomenal.
Betsy said Ross is a good example that conventional wisdom isn't always true. So long as the patient continues to receive therapy and mental stimulation, they can show improvement. Unfortunately, the way our Medi-cal system is set up, if a patient is on Medi-cal, the family is not allowed to provide any outside paid therapy or they lose their benefits. This essentially dooms the patient to a warehouse type existence and no hope of recovery. As Betsy said, they are so thankful they've got Ross at home where they can offer him the care and therapy he needs to recover.
When Jeremiah got Ross up from his nap and started working with him on the pedals, Ross started to laugh. He kept that up for a good five minutes. Betsy said it sounded really beautiful to hear him laugh, but she can't help but wonder how he would be doing now if he hadn't had to deal with the hydrocephalus for so long before he finally received appropriate treatment, or if he hadn't had to undergo the later surgery to repair injuries that went undiscovered for far too long. Still, in spite of the setbacks he's faced over the past two years, Ross continues to surprise everyone with his determination and strength. He's already come so far. Today, Betsy said that he seemed particularly alert and she told him he'd been in an accident and badly hurt, that much of his body was still relearning to work. She said he started watching his feet and moving them, as if he was listening to her explanation and testing to see what functioned.
Ross is doing so well, but we all know he's going to do even better. Thank you, everyone, for your continuing prayers and healing thoughts.
June 6, 2004 9:15 PM--My last update was on June 3, the second anniversary of Ross's accident. It's been a long two years, but in many ways it feels as if it's passed in the space of a heart beat. Tonight Betsy said Ross is doing well, though he's really bothered by a lot of congestion from allergies. She said they are seeing a lot of improvement in his right hand and arm--his right side is definitely the strongest. They're working on transferring him from the wheelchair to the shower chair with Ross assisting--he's able to place his full weight on his right foot and is clearly helping during the transfer. He's also getting a lot better at giving "yes" and "no" responses by nodding his head. He's not speaking yet, but Betsy said it's obvious he's trying.
The big need now is for a "standing frame." It will allow therapists to work with Ross in an effort to aid him in walking. He's gaining strength in his legs on a daily basis, working the pedals of his stationary bike. Betsy said he's pedaling almost entirely on his own now without assistance.
He's come a long way in two years. He has a lot farther to go, but thanks to your prayers, your healing thoughts and your support, Ross isn't in this struggle by himself. Thank you so much for being a part of his team.