Updates to June 2, 2007
for injured cyclist Ross Dillon, beginning June 1, 2006
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for updates prior to 1/2/05
Read Journalist Chris Coursey's article about Ross in the Santa Rosa
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Thank you to everyone who has so generously donated to the Go Home Foundation, previously known as the Dillon Family Fund. Rusty, Betsy, Ariel and Liz have asked me to extend their appreciation to each and every one of you. Gifts to the Go Home Foundation are used by the Dillon family to help Ross. Donations are now tax deductible.
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 Ella and Ross sort of checking each other out!
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May 26, 2007--Betsy sent a wonderful post for today:
Although it has been a while since I updated, Ross has been very busy. We are now able to have a therapist come in Monday through Friday and it is very good for Ross. Everyday he is crawling, scooting from the back of his seat to the front, trying to scoot front the edge of the seat back (a different set of skills), scooting side ways when sitting on the plinth, and standing. Also, we put the full-length mirror in the therapy room and Ross is asking for us to put it in front of him so he can watch himself. Even better, he looks at himself, realizes that it is he, and adjusts his posture, his head and his legs to the position we tell him. One day last week, he was slumped forward and when we positioned the mirror for him, he sat up straight, shifting his shoulders side ways, looking in the mirror and smiling at himself. This is a sophisticated abstraction that has been gradually developing.
Every day, he stands on his knees, both leaning on the plinth with his arms in front supporting himself, climbing up and crawling across it trying to get the gummy bears, or standing on his knees and moving his pelvis back and forth. He even walks on his knees while being supported by two people, and the third helping with his left leg. He is also crawling the ten foot length on the floor mat with less help. In the midst of all this excruciating hard work he will start to chuckle with joy. Another day, I started tossing a ball toward him (he was seated in the wheel chair), and he would lift his foot and kick it. After a while, I changed the game and he would either lift his right hand to hit the ball or kick it, depending on where I threw it.
Every day we are having him free stand. You may remember that last fall we were having him stand and it would take five of us to help him: one person in back, a person on each side, someone on the floor keeping his feet flat, and a fifth person in front holding food to motivate him to stay standing. This week, he is standing with two therapists, one making sure both feet are firmly on the floor and checking his stance, the other standing next to him, helping him keep his body in balance. Good ole mom or Jeremiah is positioning the gummies to encourage him to shift his weight in the right direction. We are also seeing Ross, while free standing, bending his right leg, than straightening, using his thigh. The other day, after practicing standing, Jeremiah was talking to Ross about walking in to the house to get his lunch. Ross started gesturing to the walker (gait trainer). We brought it over (it now takes only two people to get him in instead of the three of us it took three months ago), put Ross in it and he walked out of the therapy room, up the ramp, down the hall and the length of the living room, and ate his lunch in the walker. He is using his right foot well and dragging the left foot, but this is a huge improvement and means that we will soon be able to have him spend an hour or so in the gait trainer at a time.
He is also joking more, particularly about food. He will say, “Give me food, more food.” Then roll his head around and say, “I never, ever, ever get food.” This all ends with a big laugh. Yesterday, one of his friends came to visit with one of the professors from Santa Clara University. Ross was very animated and shook hands with both men and the two other men who came with them. Afterward, he talked more and was very happy.
I have been saving the best for last. Both the therapists who were here yesterday said Ross is almost ready to start standing by himself. In fact, one of them said, “You are going to have to watch him because he is ready to stand. They had him standing a number of times. Well, today Harold, the caregiver just told me that Ross stood up four times, with Harold only holding his hands. He was not lifting Ross; Ross was using his own body to do it. Ross just told me, as he is lying in bed after a long day, “Everything hurts; I am so tired.”
May 16, 2007--I hadn't received an update from Betsy in ages and was growing concerned, so I went into my office just now to call her and make sure all was well. Checked my email first, and she'd sent a note! I'm printing all of it for you:
Dear Kate,
I am sorry for being so tardy. How many times can I say, “Life is a blur these days”? The good news is that Rusty and I have been putting time into organization and maintenance that has been deferred for five years. We were beginning to be oppressed by the boxes marked attention. We are not finished, but we have made a good start. The approaching fifth year anniversary of Ross being horribly injured seems a fitting time to try to put our lives in order. We have been in a crisis mode for five years and we can’t live like that forever. We are now moving into developing a life style that optimizes Ross’s rehabilitation while allowing us to live balanced and healthy lives that will maximize our ability to be here for Ross and our daughters.
Ross is doing well. Almost every day we see new behavior or a new skill. On Monday, he not only crawled on his stomach the length of the mat to get to the gummy bears, but for the first time he got his torso on the plinth (raised mat) on his own. He then maneuvered his legs up (with the therapist pushing against his left foot), rolled over, then rolled back and came off the mat on to the floor arms first (with assistance so that he didn’t do a face plant). One of the great breakthroughs is that when he is crawling, he is weight bearing on the left and using his left side to move himself. Three hours later he was walking the length of the therapy room (about 18 feet) in the gait trainer four times. He also practiced going from stand to sit several times. He is also practicing scooting from side to side while sitting. In the past, he has just dropped when released from the gait trainer. In fact, one time a couple of months ago when he wanted to stop, he said, “Drop me!” Now, we are working to get him to lean forward as he comes down. There is so much to practice.
Ross is also becoming noticeably more independent. When I walked into his room a few days ago, he told me to leave. I wasn’t sure I understood, but he kept pointing to outside the room. We discovered that he was watching a television program and apparently he did not want me to distract him. He is responding to verbal instructions more and he is still directing me with “Play up, play up!” in Snood. As he was driving around the driveway in his chair with Jeremiah yesterday, he spotted a box that had been dropped off by Fed Ex. Jeremiah said Ross pointed to the box and said, “Mine.” Jeremiah put it on Ross’s lap and Ross continued to drive himself back to the house. It was a box of supplements. I opened the box and then Ross took each bottle out of the box and put it on the table.
Ross is also talking more, with more spontaneity, and new words. This morning when Jeremiah was shaving him and holding Ross’s head in the process, Ross said, “Why are you locking my head?” After therapy one day, he looked and said very clearly and loudly, “Are you my mother?” Yesterday, he sneezed and said, “I farted”. I made a game of “We sneeze through our noses, we fart from our bum” and he laughed. He has also been cranky and I think it is because he is more aware. The good news is that he also laughs a lot, particularly at night after he has gone to bed.
We are grateful to all of you who read the updates, pray for us, and support Ross’s rehab. We are especially thankful this week to Carlos Perez of Bike Monkey and the Sonoma County Bicycle Coalition and all the folks associated for the ride coming up on June 2. www.bikemonkey.net What a fitting way to mark our walk into the next five years of this adventure.
May 1, 2007--a note from Betsy:
Ross is continuing to move forward in therapy. He is able to crawl further since we are in the new therapy room. The carpet provides a little too much friction so Ross is crawling on the long floor mat to the mat table (plinth). Today, Ross was up on his hands and knees longer than ever before and actually completed 2 ½ crawl sequences (about ten or fifteen minutes). From there he did a combat crawl for about ten feet to the plinth. He works with his giant Magneatos while he is sitting independently on the plinth and puts them away in their box. Joanna, a therapist who has worked with Ross off and on over the last four years was here to observe and commented that there is major improvement in his head control and he is beginning to have segmental movement in his trunk. I imagine that seeing Ross was a high point for her because she first started working with him when he could move nothing but his eyes. She last saw him six months ago when he could not roll from his back to his stomach with out assistance.
The other wonderful thing is that Ross and I are playing Snood, a very fun computer game that Ross introduced to me about six years ago. He is telling me, “Go up, go up!” as I work the mouse. That is one of the strategies that he taught me years ago about how to win the game. I can see that after about ten or fifteen minutes he starts to seem a little dazed, but I am encouraged that he is involved and remembering how to do it. When I ask him questions about what to do, he uses head movements to signal yes or no. I think he will be able to play by himself when we figure out a toggle control.
Jeremiah just told me that before dinner he told Ross, “You are a man.” Ross responded, “No, I am a kid.” He does seem to move back and forth between manhood and childhood and that probably adds to his confusion. As hard as it is though, Ross is moving forward and in another five years, I think we will be marveling at what he has accomplished.
April 24, 2007--a note from Betsy:
Ross had another good day today. During OT he crawled half way across the room using a leopard crawl. He then stood tall on his knees, got on the mat, rolled over and then with help sat up. He wanted to sit on a regular chair again, so he ate lunch that way. He did not protest during therapy and he actually laughed frequently. Later, during PT he walked in the walker, stepping up on a book that was a little over 1 inch thick with both feet, and then stepping down. He did that for 10 or 12 times. He was moving his right foot well, and was able to move his left foot a little. He has asked for food a lot today; in addition to a hearty breakfast, lunch, snack and dinner, I gave him a snack of small pieces of apple which he picked up with his fingers and fed himself.
After dinner, I read to him from a book and then he started pointing to my cell phone. I finally realized after he kept pointing to himself that he wanted me to take more pictures of him as I did at the chiropractor’s office last week. We also played two games of Snood on the computer. He definitely was involved and actually pointed at moves. I am excited to set him up with a toggle control and see if he can play by himself.
April 22. 2007--another truly upbeat note from Betsy!
We are moving forward with the therapy room. The donated carpet will be installed this week and then we will start moving therapy equipment, all the books and binders filled with information about brain injury, nutrition, therapy, etc. Then, hopefully, there will be less clutter in our house, and more organization.
Ross continues to stay awake from 5 AM on. About a week ago, I was going over my notes from the biomodulator training and reread that calcium stimulates the sympathetic nervous system (arousal) and magnesium stimulates the parasympathetic system (resting). I reduced the calcium/magnesium Ross takes at night and added magnesium to replace what I reduced in the Cal/Mag supplement. Theoretically, this could mean Ross’s rests better, sleeps better, and heals better at night. Does it also mean that he doesn’t need to sleep as much? I don’t know the answer; we will just have to let Ross show us over time.
Today, we went to church again. Ross enjoyed the drive over the mountain, although he did tell me to slow down. When we were seated, I showed him the bulletin with Rusty’s name on it. Ross looked at it. In fact, he held the bulletin in his own hand and looked at it for a few minutes. He then said in a loud voice, “My name is Ross Dillon.” He seemed to be singing during the hymn. He also wanted to sit in the pew and kept gesturing; I look forward to the day when he can do that. He started to look sleepy and his eyes were at half mast, but he perked up as we drove home. Tonight, instead of feeding Ross earlier, we all ate taco salad together. He and Ariel loved it when they were growing up. After Ross had eaten, he started reaching for other people’s plates. Finally, he began looking very tired. He pulled himself upward and said, “I am so tired.” The end of a very good week and I am looking forward to the coming one.
April 21, 2007--I just got a really upbeat note from Betsy. I love passing on such good news!
The last few days have been terrific for Ross, both physically and cognitively. We took the front passenger seat out of the van to make it easier to put in the new chair; as a result, Ross is sitting next to me and has become a back seat driver. On Tuesday, when we went to Santa Rosa we were passing a long line of oncoming traffic and he told me to slow down. I asked, “Do you think I am going too fast?” He nodded affirmatively. On Thursday, when we went to the chiropractor’s office, Ross kept telling me the way to go. He also kept telling me to stop. When we were sitting in the waiting room, Ross indicated that he wanted to sit in one of the regular chairs. We moved him to a chair and he sat there for about twenty minutes. He occasionally would slump to the left because his left arm would fall from the arm rest, but he always righted himself immediately when I reminded him to bring up his arm.
Yesterday, he worked hard with the OT in the morning: more starting from being on his knees on the floor and climbing (with difficulty) on to the mat table. Again he was demonstrating the ability to do more than he had the last session. Afterward, he was lying flat on his back, and he said, “Help me sit.” The OT helped him pull himself into sitting position, and he said, “Thank you”. When we started to put his shoes on, he wanted to put her shoes on. Then, I offered him my crocs, which he really likes. He immediately started trying to take off Letha’s shoes and put on mine. Then Rusty remembered his own green and orange crocs (you may remember Ross really likes the color orange) that are too big for him. Ross loved them, and so he had another pair of shoes to put on and a new pair of crocs. He was sliding both feet into the shoes, not just the right foot. As Ross sat there independently on the mat and we talked, he started moving his body forward with a little bounce, over and over. We finally realized that he wanted to stand up, and he did stand a couple of times with one person on each side. He used his legs to push himself up into a standing position, and he stood very tall. Later, sitting on the mat (again independently) and eating, he also did not slump, but sat tall.
During his PT session, he sat on the mat table and hit a ball with the bat. He was hitting so fast, that it kept us on our toes supplying balls fast enough (we were working with two miracle balls). Later, after his PT session, we had him sitting in one of the kitchen chairs, something he now loves because of the normalcy of sitting in a real chair (I think). We put the bottle of gummy bears into his left hand and before we knew it, he had taken the lid off and was reaching inside. He sat in that chair, periodically reaching far for chocolate covered raisins, for at least 20-30 minutes.
There is another change this week. He is waking at 5 AM as usual for food and meds, but he is staying awake instead of going back to sleep. I am curious to see if he continues with this. He is talking a lot more. Yesterday I showed him the word card for Toilet, to see if he wanted to go to the bathroom. He smiled and said, “I love toilets.” I had not said the word, just showed him the card with the picture and word. I don’t think he has used the word since he was injured.
All in all, it has been a very good week.
April 17, 2007--I've got a different sort of update today and will include the note Betsy sent to me. They had friends visiting and Betsy asked Paul Popper to write down his observations of Ross's therapy session. In the following post, Betsy's comments are in blue, as usual, Paul's are in black/bold, and the therapist's notes in red.
Hi Kate,
I’m sorry I didn’t get back to you. Every time I sat down to write, I was overwhelmed by the task. I was also waiting for Paul Popper to send me his impression of Ross’s OT session. I was thinking that Paul’s note and Letha’s short note about Ross’s progress are a touching descriptions of his life these days. Rather than attaching them, I will include them below as part of my note. Ross’s life is oriented around therapy these days. Family friends were here during Ross’s OT session one week ago. I asked Paul Popper to write a description of that session and I am also enclosing the therapist’s note about Ross’s progress.
Take in the scene. Ross was on his knees facing and leaning on the workout platform with Letha standing behind him, supporting him with her knees. Jeremiah is sitting cross-legged on the far side of the platform manipulating gummy bears just out of Ross’ reach. Rusty by the windowsill, concerned and smiling, Betsy jumping in and out of the action as needed and a gallery of observers from three families including 12 year old Luke, perched in the bleachers (on the top bunk bed), rooting Ross on.
As Ross is kneeling he is actually supporting himself upright with his left arm. A first!! He just started using the left side of his body recently. Letha is encouraging him to use his right hip to help shift his body towards the left so he can reach the Gummy Bear. She explains, points, touches, pushes cajoles, jokes, explains some more and the instructional, motivational cycle starts over again. After about two minutes, which feels like an hour, Ross makes the move, turns his body and reaches. We all erupt in spontaneous ovation and various encouraging exclamations. Ross almost has the Gummy Bear as Jeremiah adroitly shifts it just out of his reach. This happens several times as Ross mobilizes his trunk and pelvis to support different moves, all of them more and more complex, including lifting himself completely above his knees and supporting himself from his trunk upright for a few seconds before he gently slides down onto the floor.
We the team scream and applaud at times and at other times murmur under our breaths and to each other about how we would like to wring Jeremiah’s neck for being so cruel to Ross. Under our breath cause we know it is for a larger good and we are seeing the result continuously, but also because Jeremiah weighs 200 lbs and used to play Rugby professionally.
Ross talks articulately and in context, albeit in scattered sentences, mostly when he is mobilized and motivated as when he is being asked, cajoled encouraged and frustrated, in between his successes. For example when on his side, and having difficulty getting out of that position, “Turn me over” comes out loud and clear! More then once. Or sitting up on the bed and being “asked” to lean forward, again to reach the Gummy Bear, he eventually pleads: "Pull me over!" And when a hand gives him a little pull: “Thank you.”
But the highlight for us came later in the session. Ross has been saying for a year, (again intermittent but consistent communication), that he is a man and lately that he does not appreciate females bathing him. Sooo, in this context as Ross was working on a particularly difficult move of reaching sideways, Letha exclaimed, “You can do it! You are a man.” Within a split second we heard out of Ross’ mouth: “I am a woman!” Wow, if not a sense of humor, it was definitely an exclamation indicating an abstract ability along with being frustrated and oppositional, in the moment. Good work Ross!!!
GO ROSS GO!!!!!!!
So did we all eventually go, leaving the Dillons there, on their challenging and inspiring journey. But we all want them to know that they are not alone. And they are not! Go team go! Ross used to work out with a team as a cyclist and he is working out with his team now too.
GO ROSS GO!!!!! GO DILLONS GO!!! GO TEAM GO!!!
Occupational therapist, Letha’s note:
Going over these notes (over a month's worth) is so encouraging. Ross' progress is building in every area. As I re-read each note his increased compliance, improved mood, and dramatic change in ability to move his body all encouraged me.
Today's session showed Ross' awareness of his guests and, it seemed to me, his desire to do well. Tell him I'm impressed. Today showed a lot of what he can do, and will be able to do.
Betsy added: Summarizing, I quote Ross (in the past he has asked us to unlock him or to release him), who during therapy last Friday said, “The locks are broken.”
April 12, 2007--Betsy wrote: Ross drew these pictures on Tuesday, April 10. Rusty and I are impressed.
(I've only posted one so the page will load better--both pictures are similar)
April 5, 2007--I'm home from NY and just got a wonderful note from Betsy:
Our lives are very busy with therapy and trying to get Ross out more. He continues to be more and more expressive. He told us loud and clear last weekend that he wants men to take care of him. He said, “No women. I am a man.” In addition to privacy issues, his men caretakers have the strength and rapport to mentor, coach and to be a companion to Ross, who is trying to regain his life as a man. Additionally, all of his therapists are women, so we do have a good mix. Another thing he said was, “Listen to me.”
Last Friday, Rusty and I took Ross to Spring Lake and while Rusty rode his bike, Ross drove his new chair along the paths while I accompanied him. He drove the chair for about an hour and did very well. He made the decisions about which path when we were at an intersection, went between posts that were obstacles to cars, and even did a 180 degree turn to follow a couple of women who passed us. I only had to take over a few times: twice when he forgot to watch and was going off the path and when he wanted to go through a locked door. We encountered two bicyclists who knew him and that was fun. Afterward, we stopped to buy pizza and had a half hour wait. While we were there, Rusty adjusted the chair so that Ross was at the same level as everyone else and Ross seemed to like being at eye level with others and the attention from a couple of men who were examining the chair’s technical details. We arrived home around 9:00 and Ross really enjoyed the pizza even though he was very tired. The whole excursion was a taste of normality and we are committed to weekly excursions in the future.
In therapy this week, he had some breakthroughs with being able to briefly support himself on his hands and knees. He also chose to use his left side, and it really seemed that his brain is now recognizing that the left side exists. Someone explained to us that when a person first suffers a brain injury, the brain tries to get everything to work, but if one side or extremity doesn’t respond, the brain continues to maintain it, but stops sending impulses. That is what happened on Ross’s left side. It appears that the neurodevelopmental training has reawakened the connections between the brain and his left side. Later, when Ross was in the walker, he actually was walking back and forth, moving his right foot and dragging the left. We are thrilled with his progress.
March 27, 2007--A note from Betsy:
Ross is enjoying using his new power chair. When he was standing in the chair yesterday, he maneuvered himself to the kitchen where I was cooking. I put a spoon in his hand and he bent down and scooped up some onions from the pan and ate them. I hope to build on that and have him start cooking with me.
He had a very tough and good therapy session in the morning. We are now working to transition Ross into doing as much for himself as possible. This means work for us as well as for Ross because of our inclination to do for him what he can learn to do for himself. Yesterday, I realized that Ross is more confident of his ability to learn than he was four months ago. This is, of course, because he is learning to do things he thought were impossible. Thank you all for being there and caring about Ross and his recovery.
Note: I will be in NY for the rest of the week and may not be able to update the page while I'm away. It always depends on the Internet hook up I'm able to get and whether or not I can upload to my site. Kate
March 25, 2007--A note from Betsy:
Ross had very good therapy sessions last week. The highlight was Tuesday when he was on the plinth (therapy mat on legs) and moving around following gummy bears. Ross rolled over and moved around, sometimes haphazardly because he is still learning to control his body. Eventually he was on his stomach lying across the mat and he slid back, ending up with his knees on the floor and kneeling. This was a first and very exciting. He also had two good sessions where he was standing, and an additional good session in the walker. He is moving so much better in the walker, his right foot moves forward and backward almost normally, and it takes less effort to help him move his left foot. He actually turned himself around in a circle at one point.
Friday was dentist day and it is never easy. Ross has to be sedated and his mouth held open with stretchers. This time it had only been six months since the last appointment and we want to try to keep that schedule. We do brush Ross’s teeth daily, but it is almost always a struggle and not pleasant for him or us. He was in a happy mood when it was over because of the sedation, but on Friday afternoon and Saturday he did not feel well. His lips were sore and I am sure he was feeling the after effects of sedation.
This afternoon we went to a park in Santa Rosa that has nice flat parking lots and wide paths and Ross drove his chair around by himself. (We stayed close enough to take charge if he started to get into trouble.) He was a little subdued at first, but became more enthusiastic. He did a great job and was at it for about 30 minutes. When he became tired, he said, “Go home and watch TV.” (I am enclosing a picture of Ross driving his chair at the park.) Another thing I saw today was that when we unfastened his seat belt, he moved it across to his side. He has not yet figured out how to get his arm out of it, but I feel sure we will see him master it soon. We stopped at the store on the way home and bought him an avocado roll (Japanese sushi), one of his favorite foods. He was so tickled when I put it in front of him for dinner; he immediately picked up a piece and put it in his mouth. We are blessed.
March 19, 2007--A brief note from Betsy:
I am sorry not to have sent an update sooner, but last week was a bear. Between last minute appointments and changes in schedules, I was rushing to keep up with Ross’s basic needs. Ross, however, has continued to improve. His ability to control his body is progressing. He is more cooperative, more able to use his left hand and left leg, and definitely leaning forward a lot. We had him standing again on Friday and walking in his walker. He supported his own weight instead of sitting in the seat and moving his left foot forward is much easier. He still requires some help in moving the left foot, but not as much. The amazing thing though is his speech. Spontaneous interaction is more fluid. Yesterday, Ross said, “I love you, Betsy.” He also told Ben, when Ben reminded him to chew his food, “Don’t try to teach me how to eat my own food. I’m a man.” I have to stop because the OT is here. More later.
March 13, 2007--A really neat update from Betsy:
Ross really is teaching us about recovering from brain injury. On Saturday night, he had the scary seizure, but on Sunday he smiled a lot and had bounced back, although he did not speak much. He did have a moment, when he was either crying or anguished, and he said, “I am still a man.” I believe that is the thing that he worries about most.
On Monday, he had jumped ahead. He woke up laughing, talking and singing. He worked with the occupational therapist with enthusiasm, doing things he had been afraid to do before: standing in the chair next to the mat and coming forward on his knees, and leaning way forward to reach toward the floor while sitting on the mat. He placed Magneato balls on the Magneato structure we built on the floor, leaning forward to put them there. He finished with replacing all twelve balls in the Styrofoam box that has special recessed spots for them. The therapist said that even when he was clearly physically exhausted, he wanted to complete the activity. Immediately after OT, he sat on the mat without support and fed himself his lunch.
Later, in physical therapy, after again getting his feet and legs off the bed, pulling himself up to a sitting position, he stood, with help, and did a pivot transfer to the chair. For this session, after some stretching, he sat on the edge of the mat without support, held the bat with both hands and hit about twenty balls. To finish, we got him standing in his chair, and he hit balls with the bat. Our goal is to get the hip rotation that batters use. Ross was rotating his upper torso a bit, but I know that he will be able to rotate his hips soon. His pattern seems to be initial doubt and/or fear, easing into it, practice, then mastery, just like the rest of us.
He awoke this morning at 4:00 A.M., again singing and laughing. I hope he takes a nap before we have to leave for speech therapy. Thank you everybody for helping us make Ross’s rehabilitation possible. God bless you.
March 11, 2007--Just got a note from Betsy:
Ross has been more congested this week. We have tried natural remedies with some success. He was also very cranky Thursday through Saturday. I thought it might be because he had not been pedaling daily this week because we were busy with other activities. He did seem happier after pedaling on Thursday. He did well in therapy on Friday, even though he clearly didn’t feel well. We took it easy on Saturday. He was very grumpy and his eyes were not working together as well as usual. Last night, as we were putting him in bed, I commented that we needed to be alert for any seizure signs. Within five minutes, his head and eyes were fixed to the left, and then he turned his head and was fixed to the right. I immediately got out the sedative that we use to stop seizures and gave it to him. (It is at times like this that we know that he still needs the feeding tube.) He had the strongest seizure that he has had in months, maybe a year. It lasted ten minutes and was then followed by a milder three minute one. I was interested to note that it was definitely bilateral with both hands moving the same and both legs moving. He did not come back immediately, but he was responsive within two hours and let me know he did not want any more damp cloths on his face. These episodes are horrible to go through. I don’t know how much he is conscious of it, but it breaks my heart to watch him have a Grand mal seizure. This morning he has a big headache and, with a couple of Advil under his belt, he now is giving us a wonderful, lopsided grin and asking for food. I have no doubt that, once again, this was part of the rewiring that it is going on in his brain, but seizures are not something we welcome.
March 8, 2007--Just got a note from Betsy:
We have been very busy this week. Ross is continuing to progress on all fronts. We got together with another of Ross’s childhood friends on Monday afternoon. Misha regaled us with reports of their childhood pranks. It was hard to tell how much Ross remembered, but it was definitely an experience on which to build. Yesterday, he slept until 11 AM, and then watched us working in the garage where we are making space for therapy to happen. Today, he had another massage and it was hard for him to relax. Again, he said, “stop a lot”, “that hurts”, or “get me food”. I have developed a two part theory about this. 1) That this may be the agitation that brain injury patients go through, or 2) there were so many times over the last four plus years when it really did hurt and Ross thought, “Stop, it hurts.” I think he has practiced many of the expressions in his repertoire, and this may be an example. Later, he had lasagna and green salad for dinner. Before I had a chance to help him put the spoon in his hand, he picked up a regular fork and started eating. He ate 90% of his meal, feeding himself with the fork. It was very impressive; messy but he got every last bite.
March 1, 2007--Another encouraging note from Betsy:
Ross continues to amaze us. Now that we have the chair back, we are having him stand every few hours. He is bending over to pick up food and then standing again. Jeremiah had him standing, with the protective bar across his chest. He put a banana on the table and stepped a few feet away to get something. When he came back, just a couple of minutes later, Ross had bent down, picked up the banana, taken a bite of it, and put the rest of the banana under his left armpit. Yesterday, in therapy we were able to get his fingers intertwined with each other for the first time. It took several attempts, but for him to do this and hold it for a while is very beneficial for the reorganization of his brain. He also got a massage from a woman who volunteered after reading about Ross. It took a while to get him to just relax, but he did and I think the treatment was great for his feet and legs.
We have seen some smiles and a few laughs over the last couple of days, but he has been more serious. I long to know what he is thinking.
February 26, 2007--Just received a note from Betsy:
Still no pictures, our septic system is giving us trouble, so Rusty was working on that.
Ross is continuing to enjoy his new power chair. He is able to spend more time and be comfortable in it then he was able to spend in the old chair. He is much more relaxed, particularly in his arms and hands because it supports him properly. He is also learning to steer it through tight spaces that require maneuvering.
As for the more physical work of being on his hands and knees, he is doing well. During the last session of the afternoon, we stopped because it seemed he was beginning to overload. One funny thing happened. I was using a little gummy bear as an incentive to get him to move forward. He picked it up, and then he dropped it. I moved it further out instead of giving it to him. He said, in the most natural tone and voice, “Oh, Mom!”
Tonight when he was at his easel, he drew a complicated shape and made it a continuous unbroken line. It is so rewarding to witness all of these small advances.
February 24, 2006--Ross continues to show so much improvement--a long note from Betsy:
Well, Tuesday was an exciting day because the Tour of California came right by our house and the peloton was only two feet from where Ross was sitting. The night before, I took three cycling jerseys from his closet: the Hulk shirt, a shirt with Ross’ picture on it, and his Boston Bicycle Club shirt. With a big smile, Ross chose the B2C shirt. I was pleased since I think he chose it because he remembered it and perhaps remembered riding with the team in Boston. He has seemed not to remember living in Boston, but his responses to questions about Boston in the last few months don’t seem as confused. I must emphasize that these are nonverbal responses.
Anyway, Tuesday morning, we were at our ringside seats with friends, coffee and scones. Ross was really interested in the food, but as the procession of support cars and motorcycles came by, he started to notice and he waved to them and the cyclists with his index finger. He was quiet for the rest of the day and I had the sense that he was trying to integrate the experience.
We were without the new power chair for a while because there were some problems with it. It is back and Ross loves it. When we went to the chiropractor on Thursday, Ross did not like lying on the table. He kept telling us to “seat me”. He told the chiropractor as he pointed to the chair, “I bought it. I’m the king.”
The day before, in Occupational Therapy, the therapist had Ross come forward out of the new chair directly on his hands on the therapy table, a modified crawl position. Ross spent a lot of time that hour standing tall on his knees, then going down to his hands and weight bearing in the hands and knees pose.
Yesterday, he walked a few steps sideways from a kitchen chair to his power chair with two of us supporting him. Every time he sits in the kitchen chair, I am reminded of when we first tried it three years ago. We put a belt around him and the chair for safety, but he just kept sliding down. What a difference now, he even crossed his right leg over the left knee.
Another story about Ross, Wednesday night I was trying to decide which green vegetable to give him for dinner. I showed him both the spinach and the green beans. Ross said, “I want all the food.”
Yesterday, as he was rolling himself from his stomach to his back, he told Jeremiah, “I am glad I’m home.” We are too!
Chris Coursey of the Santa Rosa Press Democrat wrote a great article about Ross and it was in the February 21 edition. You can access it at www.pressdemocrat.com. (Should be a direct link to the article.)
Betsy
February 18, 2007--I just got a note from Betsy:
Ross has had a few quiet days. He is still doing well with therapy. The current focus of both the OT and PT is mat work and he is becoming more mobile and adept in his movements. On Friday, when he finished on the mat, he, with three of us supporting him, inched his way to his recliner. As usual, his language skills really come out when he is working. We were trying to get him to reach out for a chocolate covered raisin with his left hand and he said, “It isn’t possible.”
The coming week is going to be exciting. The Tour of California will come right by our house and we will be out to watch the Peloton fly by. Ross has been much more aware of the cyclists on the road lately and I am looking forward to this experience.
February 14, 2007--Just received a note from Betsy:
Ross has been in a delightful mood the last couple of days. He sometimes becomes grumpy, but he often appears to be enjoying himself with all the complaints. For example, on Monday night he was complaining so much during his bath/shower that I was sure he must be uncomfortable. When I checked, he was fine and enjoying the water. Later, when he was in bed and being dried with a towel, he said, “Don’t rough me up.” He also said several times, “I love water.””
Last night when Rusty came home, they were playing a game where Rusty makes hand moves for different animals and Ross mirrors the motion. When Rusty started to make raspberry noises with his mouth, Ross repeatedly took big gulps of air, filled his cheeks and blew out noisily. This is a first and takes a lot of control and awareness. The other thing he did was to open his mouth very wide and keep it open. Ross is on a roll. Two different people have been here for the first time in weeks and they each talk about how much he has changed.
Onward and upward.
February 12, 2007-evening--Just got another note from Betsy:
Ross had another excellent occupational therapy session today. He practiced standing from a sitting position and while sitting reaching down to his ankles with his hands. He has really mastered moving from sitting to sitting in his wheel chair. The move from sitting to standing and then sitting is new and will take practice. Today he hardly said, “No” and he smiled and laughed a lot. Once or twice he said, “I can’t”, but we all noticed how much more he cooperated without first refusing. I think he has become more confident as he himself sees his progress. When the session was over, the therapist put a piece of paper on his easel that said, Ross, good job in OT today. Ross smiled, traced his name, and said, “That’s my name”. Then he repeated “Good job”.
Later, Rusty and I were sitting with him and talking. He said many things we could not understand, but we did hear him say, “I am thinking.” Later, when I played a card game on the computer, he was actively involved and said something about “a play”.
February 12, 2007--My apologies to those who might have had trouble accessing the main site at www.rossdillon.com today. I had trouble uploading some info this morning and it seems to have locked everyone out of the page! It's been fixed, now, and you should be able to access it without any trouble. I had just a brief note from Betsy this morning:
Ross seems to be doing better. I think a metabolic change may be happening. His tongue is looking so much better (he has had deep grooves since he was injured), he seems less congested and his body temperature is closer to 98.6 (it has been consistently below 98) than it has been since we brought him home.
February 11, 2007--Note from Betsy:
Ross is a little under the weather; he may have an intestinal bug. We are trying to let him rest a lot.. He isn’t talking much except to tell us to let him rest and to ask for food. He had a small absence seizure last night. However, he did an impressive roll from his stomach to his back this afternoon. Hopefully he will sleep really well tonight and feel much better tomorrow.
February 9, 2007--Excellent news from Betsy!
Ross stood up by himself! This morning Jeremiah called to me and I went running to find Ross standing. Jeremiah was helping Ross out of bed and into his wheel chair, supporting Ross by putting his arms around Ross for support. When Jeremiah asked him to stand, Ross did it by himself and he stood tall. Ross stood for several minutes before sitting again. This is the pay off for all the mat work Ross has been doing daily for the last two months: neuron development, flexibility, strength, confidence and standing.
Needless to say, when his Occupational Therapist arrived, he demonstrated his standing to her before doing an hour of hard work on his hands and knees. He had a break for about an hour, and then it was time to show the Physical Therapist what he could do. Then another sixty minutes of work. Ross was exhausted, but he still worked.
Yesterday’s accomplishment was for Ross to scoot himself a couple of feet toward the foot of his bed while sitting on the edge.
I was thinking today about those awful days four years ago when the experts were refusing to give Ross therapy and telling us Ross’s case was hopeless. It was just about four years ago exactly that Ross began to be able to move his head enough to cause the little hackey sack I had put on his head to fall off. And that was the beginning of documented voluntary movement, the move back to rehab, and in June of 2003, Ross coming home. We are so grateful for all the prayers, support and suggestions from people around the world. Thank you so much and isn’t it wonderful?
February 2, 2007--More good news from Betsy:
Ross is continuing to progress on the mat on the floor. We are now putting him on the mat for an hour and supervising, but not actively structuring the time. I read a couple of years ago about a study which determined that neurologically injured children who had been put on the floor by their parents had developed better than those in a very elaborate rehab setting. Watching Ross indicates that if we don’t help him, he is stimulated to develop strategies for turning over and for moving. This is true for babies and for all of us, but it is easy to forget when we want to do everything to help our precious son.
I watched Ross put together a smaller, more complicated animal puzzle yesterday. It has very small knobs and he managed to turn the pieces and put the pieces in the right place. I don’t know if he had memorized where the pieces go or if he was recognizing details about the shape of the pieces. Either way, it is good cognitive work on his part.
Ross had an absence seizure on Thursday afternoon, but he was laughing afterward. I continue to think these events indicate positive changes in his brain.
February 1, 2007--It sounds as if Ross is right on the edge of something huge! Please keep him and his family in your prayers:
Ross had another good session with his NDT(neuro development training) therapist yesterday. She pointed out that when he was on his stomach, he was moving the small of his back, similar to pelvic thrusts. This is really important because after four and a half years on his back in bed and sitting in a chair, his posture is always concave, leaning forward with the shoulders. Having mobility in his back is important for crawling and walking.
Afterward, when he had, with help, crawled into his recliner and the therapist was writing her notes on her lap top, Ross asked her, “What are you writing about?” In the middle of the night when he was awake for a while, he asked, “Why can’t I walk?” It is exciting for us to watch his speech development. In a few hours, we will be off to see the chiropractic neurologist who has been working with Ross since he came home (when Ross could do nothing). The chiropractor is always thrilled at Ross’s progress and that is a great boost for Ross and us.
January 31, 2007--Got another note from Betsy:
Yesterday was a great day for Ross. He slept well and was awake by 8:00 A.M. Tuesday is speech therapy day. On the way to that appointment, we stopped at the lab to have blood drawn for his bimonthly Tegretol (antiseizure medicine) level and electrolyte check. He was great. He held his arm still without any resistance (he did say, “That hurts”). I was so proud of him. We go to a small lab where the tech has gotten to know Ross and she commented on how the last few times have been much easier.
When we pulled up to the speech therapist’s office, Ross pulled the white towel from around his neck (we have it there for when he forgets to swallow). I had a bandana with us that I put around neck. I have been talking about using a bandana when we go out, and on Sunday when we had gone to a party, he had lifted the bandana to wipe his lips. My impression is that he is becoming more aware of himself and his actions.
During therapy, he continually wiped his mouth himself. This is also new. He was in good spirits, and he and the therapist mirrored each other with both mouth movements and shoulder lifts. He didn’t finish his lunch, because he started to be distracted and tired and that is a recipe for choking.
We came home for a rest and then his daily cycling. After dinner, Jeremiah was working with him. Jeremiah wrote A, Ross wrote B, Jeremiah wrote C, Ross wrote D, Jeremiah wrote E, Ross wrote F, Jeremiah wrote G and then Ross wrote ons. The alphabet was not posted and Jeremiah did not tell him what to write. A little later, Jeremiah called me over to see that Ross had used wooden blocks to write ROS (we only have one S), Ross had picked them out himself. I said something about the letters for Dad’s name, Rusty. We isolated R S T, found the U and then he found the Y and put them together.
This morning, Rusty went in to see him and was playing around with the word Bazoom. Rusty said “bazoom” three times and Ross repeated it three times. For Ross to be able to repeat words that we ask him to say has been one of our longtime goals. Onward and upward.
January 30, 2007--updates from Betsy just get better every time!
Ross is continuing to develop more control, strength, and flexibility in his trunk and limbs. As I think about this, I realize how important the daily therapy work that he does with his caregivers is. The therapists teach us the theory and techniques that we use with Ross on the days the therapists aren’t here. One example is the process of getting Ross out of bed. Jeremiah brings the chair to the edge of the bed, Ross responds by starting to roll toward the edge of the bed and moving his right leg off the bed. Jeremiah then helps him, mostly with cueing, to move his left leg off and then helps him to sit up. Most of the time Ross is able to sit on the edge of the bed with minimal support, tucks his head and reaches for the far arm rest on the seat, Jeremiah lifts him while Ross puts his weight on his legs, and Ross is moved to the chair. Even I can do it with someone helping. Ross is doing more and more of the work and we are making sure we use a safe technique.
Today, during OT, Ross rolled over and over on the mat. He is becoming more adept at doing it by himself. Another step today was his stretching. Twice, in bed in the morning and again on the mat, he stretched and brought both arms up (bilaterally) and his legs. In addition, he was shortening and lengthening on each side. An important skill that we all take for granted but is new to Ross. As Ross progresses and as I am able to read more about neurological injuries and therapy, I am more in awe of the way the brain and central nervous system work.
We are so blessed to have the fine therapists we have for Ross and to have been able to set up a rehabilitation program in our home that allows Ross to grow each day. Our thanks to all of you who contribute to make this possible.
Another story from today, Ross was pedaling on the exercise bike from a recumbent position. He didn’t want to quit after an hour so Jeremiah let him continue for another half hour. Rusty was present when Ross looked over and saw his old Serotta road bike leaning against the wall. He very excitedly started pointing to the bike and said, “My bike, my bike”. This is a first. Another first was that twice, each time during a therapy session today, he said “My name is Ross”. He has never said his name without asking first what it is. Thanks be to God.
Betsy
January 22, 2007--I just got an update from Betsy:
Ross’s OT told us on Friday that Ross’s progress has accelerated. She is working with him on crawling and getting those small precursor movements going in his pelvis, legs and arms. On Friday, Ross started on his back on the mat on the floor and with less than 50% help was able to climb into his recliner. It took the whole hour, but was breath taking to watch. Today, he worked again on crawling, but this time spent most of the hour sitting on his legs with his arms supported on a low bench and pulling himself forward and up over and over.
Yesterday, Ben was stretching Ross’s legs and pelvis and Ross said to him, “How would you feel about somebody bending your leg if you were me?”
On the medical front, Ross is congested, but I think it is allergies, since our whole family seems to be suffering. We live in a beautiful area, but it is allergy heaven. Nothing is perfect. It is time for physical therapy; I think we are going to put him in the walker.
January 18, 2007--Received an update from Betsy:
Ross continues to work hard and make incremental progress. We have started trying to get him on the floor for a while every day. He turned himself 360 degrees on Tuesday with help from us getting him up on his left elbow and bending the left leg so he could push as he tried to get to the gummy bear ahead of him. I still have trouble getting the sequence fluid, but Jeremiah is adept at it. Ross was exhausted when we finished; it was about an hour of hard work, but I noticed his wandering left eye was more centered and the pupils were equal. When we got him in his chair for dinner, he looked great.
We had him on the floor again yesterday afternoon when Ben was here and Ross immediately started lobbying to sit in his recliner. Ross said, “I have always wanted to sit in that chair and eat and watch TV”.
When we asked him to lift his left leg, he said, “I don’t have the power”. These are times when his language skills blossom. There is something about his weight bearing on the left side, the slower to recover side, which really helps with speech production, word recall, and fluidity.
He is now feeding himself with a fork as well as a spoon. We have to put the utensil in his hand, although he is learning to pick them up himself. He has learned how to open his hand to drop things. He and Jeremiah work on Magneatos together, and Ross is now using his spoon as a lift to pick up the rods and put them in place.
January 15, 2007--Another update from Betsy. Ross is doing so well!
We had a good weekend. Ross is enjoying learning to control his new chair and we are enjoying seeing how much control he has in standing. Last night, after dinner standing in the chair, he leaned forward to kiss me. He kept leaning further and further; we had removed the bar that is at chest height so he could feed himself more easily. I was getting ready to call Rusty over to help me because Ross was bending over really far. But Ross kissed me and then stood up tall and straight. (We will have pictures soon. This is the weekend when the batteries in both cameras need to be replaced.)
Ross is also continuing to interact more spontaneously. For example, I offered him some juice while he was eating breakfast yesterday morning. He said, “No! Eat first.” Yesterday, he also traced the sentence “Ross is 30.” Then he wrote “Ross” on his own. The OT who does the NDT (Neurodevelopmental Treatment) work with him comes today; I am looking forward to watching her work with Ross and seeing Ross build on previous advances.
Betsy
January 13, 2007--Just got a note from Betsy:
Again, I apologize for not writing sooner. We are still dealing with lingering colds. Ross got sicker last weekend and had two small seizures, Sunday night and Monday morning, that I think were related to his being sick. His mouth was also sore because during his Saturday OT session he managed to put a small wooden block in his mouth which we had to extract. It was a tense few minutes and traumatic for all of us. We have decided that his reflexes are so fast that we dare not give him an opportunity to put small things in his mouth again. Thankfully, there are many objects that are too big to fit inside Ross’s mouth.
His therapy progress has been thrilling. On Friday, a week ago, Ross had been sitting on the edge of his bed and bending over to touch his ankles. When he had finished the exercise, he lay back across the bed. With the therapist’s cueing, he was able to turn himself ninety degrees with his feet still on the floor. He had no trouble lifting his right leg on to the bed, but the left leg was another story. The therapist has great patience and she waited, continuing to encourage him, for Ross to lift his left foot on to the bed. It took fifteen minutes for Ross to accomplish the task, but he did it!! Ross was so pleased and excited that he had trouble sleeping that night. Needless to say, all of us were jubilant.
A few days later the OT and PT worked together with Ross on the mat. Initially, Ross, with support, leaned forward with his knees on the ball and then also put his hands on it. After some time in this position where he was able to balance himself, we moved him to the mat and he made his first attempts at crawl/scooting, going from one end of the mat to the other twice to get a gummy bear, one small thing that is alright to put in his mouth.
Then we had yesterday. The new power wheel chair arrived. It is wonderful, Ross loves it, and he is already making advances. It is so much easier to put him into standing position. Yesterday afternoon, he was standing and we all started to dance. Ross joined in by moving different parts of his torso in ways we haven’t seen when he was standing and then he started to move his pelvis. Today, he fed himself lunch while standing, moving freely and righting himself. He was supported below the knees and by the chair behind him, and it was a great opportunity to practice dynamic standing. He is also practicing maneuvering himself inside and outside the house and he drove himself around the driveway this morning. We are able to set the speed very low which makes this much safer.
Right now he is on the mat and he has been bridging, using his legs and upper torso for support. When we put his right foot on the exercise ball and support his left leg, he brings it up on the ball and works to keep both legs on the ball. We were talking about how Ross used to love to translate Latin. Ross then said, “I don’t want to learn Latin. Latin is a dead language.” He also said, “My name is Peter and I love my sister.”
Thank you to everyone who supports us. Your love, prayers and financial support make Ross’s recovery possible. We could not do it without your help.
Betsy
January 2, 2007--Just received a note from Betsy. I spent the holidays sick and it looks as if they've had the bug as well.
Sorry I haven’t written.
We have all been sick for the last few days, but we are better today. Ross continues to improve. There are three areas that standout as I look back over the last week: therapy, speech, and new dexterity on his right side.
Last Wednesday, as the therapist worked with Ross on the mat, trying to get Ross on his hands and knees, Ross spent a lot of time weight bearing on his left side, his torso up off the mat and supported by his bent left arm. This was very hard, but Ross did it. The amazing thing was the way this activity stimulated Ross’s speech.
Ross spoke clearly, appropriately and often. As we were urging him to perform a particular move, Ross said, “Look at me, I’m trying. Other times, he said “I can’t do anything.”…”Can’t you see I cannot do this by myself?”…”Release me.” …”It cannot be done.” At one point he smiled and said, “I’m enjoying this.” Later, he said, “I know what I am doing.” …”It was not me!” Despite the negative comments, he did everything the therapist asked of him.
One day recently when Rusty went into Ross’s room, Ross asked, “Who am I?” Rusty told him and Ross excitedly said, “Are you my father? Where is my mother?” Yesterday morning when I went into his room, he looked very sleepy. I spoke to him and his response was, “I’m sleeping.”
The other area of growth is manual dexterity on his right side. Ross is now stacking the colored cones that he could only hit before. Ross picks up the cones, which are lying on their side, and is able to rotate his arm and hand to stack them one on top of the other. One of his gifts was Magneatos (magnetized balls and rods for construction). Ross is also enjoying working with them.
The wheel chair has not yet been delivered, but we have been given a new date for delivery-January 12.
December 23, 2006--Another update from Betsy. Ross' s progress is nothing short of amazing!
Yesterday, Ross’ Occupational therapist brought presents for him to open. He was delighted and did a fairly good job on the larger flat package, but had more trouble with the smaller package that held two little cars. His OT noted that he wants to do things for himself, and when he can’t do it, he becomes very frustrated. However, he was able to roll his bent knees from side to side while lying down and in the process lift his hips off the bed. He also scooted himself up to the head of the bed with a little cueing. Afterward, he moved his legs off the bed and sat on the edge of his bed and weight bearing on his left leg, a very new accomplishment. When his physical therapist arrived, he was so enthusiastic because of his success with rolling and sitting that we didn’t have to cajole him to work. He sat in an easy chair in his room, the first time in 4 ½ years. We then practiced sliding transfers using the transfer board. After that we put him in front of the piano. He smiled and said, “Piano” and something else I didn’t understand. He played one key at a time, then, with help, he was able to open his hand a little more to use two fingers on the keyboard. I can definitely see the piano as a promising activity for him. Afterward, the therapist taught him the sign language for I love you. Ross enjoyed trying to make his hand do it. Finally, we put Ross on the couch, supporting himself, another thing he hadn’t done in 4 ½ years. It was wonderful for Rusty and me to be sitting on either side of our son. Today we are looking forward to the visit of his friend Jon and his family. Ross seems to be looking forward to it.
We are so grateful that Ross is steadily progressing. Our whole family wishes everyone a blessed Merry Christmas and a wonderful New Year.
December 22, 2006--Just now got an update from Betsy:
Ross continued to be cheerful and excited, waking up laughing during the night until Sunday, December 17. In fact, on Friday night, he woke up laughing and saying, “I hate the name Frank.” He said it several times and must have been stimulated by a dream. I don’t know of anyone he knows who is named Frank. He had wonderful OT and PT sessions on Friday, December 15. The next day, Saturday, his other PT who can only come once a month, was here. He was able to observe many improvements in Ross’s function. He worked with Ross on making a beef stew and Ross demonstrated his cutting skills.
On Sunday, Ross woke up with a slightly elevated temperature and definitely did not feel well. He was grumpy, tired, and not talkative. He slept until almost 11 AM, and was back asleep at 7:30 PM. Both OT and PT were adapted to his lower energy level on Monday, but both were good sessions. The OT worked on Ross being able to move each finger on his left hand. He had some independent movement in the pinky finger, index finger and thumb. His PT session was on the big exercise ball and he lifted his left leg voluntarily to support the right leg. Usually it is the opposite. On Tuesday, we had to go back to have an adjustment made on the ankle foot orthotic for his left foot. Since we were in Petaluma, we went to lunch at a restaurant where he had his first job. He definitely recognized the restaurant and enjoyed the food. He was still rather grumpy and not feeling well that day and Wednesday. On Wednesday night, as I was preparing his dinner, he kept gesturing for me to put him in his recliner. He also started to smile and laugh, something I hadn’t seen much of for four days. Just as I sat down to help him eat, he had a seizure. Not a partial seizure as usual and definitely not a grand mal. He was not able to swallow, so I was thankful that he still has a feeding tube. Within an hour however, he was smiling and he slept well that night. This is another time when it appears that Ross’s seizure had a resetting function. I hate when they happen and I thank God that this one did not seem to have an adverse effect.
Yesterday was a new day. His speech therapist said she thought it was his best eating session yet. And writing, tracing, table bowling and choosing the appropriate color went well. He has OT and PT again today and I look forward to seeing him step forward for the challenges.
December 15, 2006--I had an update from Betsy when I logged in this morning. Ross continues to improve!
I was thinking about the update, and realizing that it would be fun to list some Ross said phrases:
He was at the chiropractor and the doctor is moving his head from side to side. Ross said, “Stop rocking my head.” The chiropractor is rubbing his head and moving it. Ross said, “Don’t eat my head. It isn’t edible.” Ross said, “I am a strong man. I have natural strength.” Ross said, “I am the king of everybody.” Ross said, “I love food. I have always loved food.” Ross said to Betsy (mom), “I love you. I have always loved you.” We bought Ross an adaptive knife for eating and at dinner on Wednesday I helped him cut his chicken himself. He had helped me put together some vegetables and stir them in a pan for his dinner. I had also bought sushi for his dinner, something he really loves. We had a wonderful time as he fed himself the avocado roll with his fingers. It kept slipping out of his fingers (I think it was less tightly wrapped this time) and he was so happy to be eating it. He fed himself the chicken and vegetable using an adaptive fork. It ended up being a messy and very fun meal.
He also was able to tell me when he had to go to the bathroom. I needed to use the lift to move him. When I got the lift, he looked at it and said twice, “I hate that thing.” I am not surprised that he feels so strongly, the lift has been incredibly helpful, but it is a symbol of his profound injuries and his dependence. Of course, it is a good incentive to work hard so we won’t have to use it anymore.
As often happens when Ross has a very good day and has made breakthroughs, he did not sleep well on Wednesday night. He woke up laughing through the night. He continued to be happy and worked diligently on his exercises on Thursday.
I showed Ross some Christmas cards with people’s pictures. He seems to recognize individuals and he puts his finger on their pictures. Today is back to back OT and PT. I am sure I will have some things to report, because therapy is almost always stimulating these days. We are looking forward to his friends coming home for Christmas; Ross enjoys seeing his friends.
December 12, 2006--Tonight when I read Betsy's email update, my first thought was how lucky I am to have a small part in this, to get the chance to read about Ross's advances before anyone else! Selfish, yes, but what a thrill, and I am even luckier to be able to pass Betsy's updates on to you:
Tuesday,
Ross is continuing to make daily progress. He is regularly rolling from back to front and front to back. He is also developing increasing strength in his arms as he does a modified pushup and I expect him to be able to start crawling soon. The OT keeps pointing out ways that Ross moves that are new and indicative of more advanced movement. She has even taught us that Ross rubbing his nose or rubbing the long scar on his forehead is therapeutically important. In fact, Ross touching his body is fairly recent. He still pedals for an hour every day, but tonight, he pedaled for an hour and a half and still didn’t want to stop. During his last two physical therapy sessions, Friday and Monday, he had great sessions in the walker. Rusty declared each day to be Ross’s best yet in the walker. We are also not using the glasses with the tape as much because of concerns that he really can focus better without than he could before. We will go back to Sacramento to see the optometrist after the first of the year.
For me, the big news is in Ross’s speech. He is speaking more spontaneously. The OT asked him to roll over. Ross said, “I don’t want to.” She asked him again. Ross said, “I do not want to.” Today, at speech therapy where he eats lunch, the therapist was holding a glass of juice up to the left side of his mouth. Ross said, “No, on right.” We looked at each other in amazement and Ross drank the juice really well from the right side. As we were getting ready to leave, Ross said, “I am king of everybody.” The question is, was that Ross, the man who has a great sense of humor, or was it Ross, who developmentally in his restoration is more like a toddler. Whatever, it was great – a new type of comment, both in word retrieval and content. He has been saying that he is a man more lately. Sometimes this is in response to us trying to wipe his face. As I write, I realize he is drooling less. Tonight, he was resisting being done to and he said, “I am the strongest man.” We are so blessed and we rejoice in each new step.
The other big news is that we ordered the new power chair; the final cost is over $38,000. The chair will allow Ross to stand, a feature that will be a help in his learning to go from sitting to standing on his own; he will be able to stand to wash his hands, brush his teeth, work at a counter, and to stand for weight bearing more times during the day than we are able to do with the standing frame. It will make standing pivot transfers easier and we will be able to travel and spend the night away from home (and the Hoyer lift). In addition, he will be able to move independently and the wheels are all terrain, a feature that will be liberating for all of us. The controls for most of the functions will be on the back panel, but can be moved to the front where Ross can use them as he develops the responsibility and skill. At the beginning he will be able to start, guide, stop and recline for repositioning himself. We, the therapists and family, believe the chair is going to inspire Ross to work harder to be more independent as well as give him more independence now. We are so grateful for all the support and most especially to the donors who gave earmarked funds for the new chair. The chair is being built specifically for Ross’s needs and I was told this morning that the factory rep has said the chair will be ready in 7-10 days, which means Ross may have it for Christmas. Quite a life altering Christmas present!
Onward and upward,
Betsy
December 5, 2006--Just got a terrific note from Betsy--Ross's improvements continue to amaze me!
What a week Ross has had; his recovery has hit a new level. The more he rolls on his own, the more he has to be proud of because he is doing it all by himself. But he also has started to lift his left foot. We had seen him move his left foot with his right and occasionally found his left foot and leg in a position that could only have been his control. But this is different. It started on Friday when he became very excited and lifted his foot 18 inches from the bed. Again yesterday, after walking in the walker from his room to his recliner in the living room, he moved his leg laterally and independently of the right leg. This afternoon, after his bath, he lifted his left foot repeatedly. It started with him lifting the left foot so the caregiver could put his sock on. In addition to the left leg and foot, he is gaining more control of his left arm. Another of his therapists is working on the small, basic connections. She had him using his new bat as a gear shift lever yesterday, and he was able to make small important advances in control. He is also using his new bat in PT, hitting the ball over fifty times while holding the bat with both hands. This is another exercise that is building new neurological pathways.
While these motor skills are improving, he is also beginning to speak more spontaneously and to dialogue. His caregiver said this morning, “I’ll give you a bath and shave you.” Ross said, “No, it hurts.” The caregiver touched his own face and said, “You want a goatee like me.” Ross replied, “No, I do not.”
I had a birthday over the weekend, and a friend gave me a tall pointed party hat. Ross loves it, and laughs uproariously when he sees it. He said to me, “Wear it.” Then he said, “I want it.” He even raised his hand to touch the top of it, another big step in reconnecting the pathways in his brain.
Even tonight, we lit our Advent candle and read some Advent readings. When it was time to blow out the candle, Ross puffed once, and then drew in a huge breath and blew it out, another example of his increased control over his body.
More later. It seems, I am always on the run these days.
Betsy
November 20, 2006--An update from Betsy (and I left her note to me in it so you'll understand the gap between updates!)
Kate,
I am so sorry to be so delinquent in sending the update. Ross’ caregiver was sick with the flu last week and couldn’t come to work for a few days, and then had to leave early when he returned. When I am by myself, not much happens besides taking care of Ross’ basic needs. I then spent the weekend trying to catch up.
Ross is still making progress. A week ago, he rolled 360? from his bed onto the caregiver bed (the beds were pushed together) and then rolled back, uphill, onto his bed. Later that day, he sat on the edge of the mat hitting the ball with a small bat. He hit fifty times with both hands on the mat (this helps reintegrate the brain), fifty hits with his right hand and fifty with his with his left hand, which is much harder. A couple of nights later, as I was getting him ready for bed, I noticed he seemed to be helping me more than usual. After he was dressed, without any help, he rolled from his back to his left side, held it, and then rolled back. He is now regularly practicing this move. The next day we went shopping for a new bat, a longer one that he chose, and he is now able to put both hands on more easily. He is trying to draw his right hand away, either because it is uncomfortable or uncustomary, but I notice that his right hand is much more relaxed afterward.
One OT has been asking him to hold his hands together and I can definitely see him trying to do that. His hands are also becoming more relaxed, particularly the left one.
We took Ross to try out a model of the new wheel chair we want to purchase for him. He immediately understood how to start it and drove it around the show room. After a while, he drove it to the door and said, “Go home.” Ross will be able to develop much more independence with this chair and it will also be an adjunct to his therapy. One thing the OT who works for the company pointed out was that when we put the chair into recline, Ross automatically pushed with his feet to get himself sitting up right again. The control to put the chair into recline will be where Ross can reach it himself, and it should cut down on the number of times in each day when we have to pull him up ourselves. Also, the standing function operates in a more natural manner than hoisting him up with a sling in the standing frame, and it will permit him to practice standing in increments. For a man of his height, learning to stand by going from a fully seated position to standing is very difficult. This way we can put the chair near standing, Ross can master that move, then we work from a little lower, master that, etc. And, I haven’t even mentioned that we won’t have to push the chair, so we can go more places.
Ross continues to have some very happy times, and also sad, overwhelming times. He became overwhelmed right before we sat down for Thanksgiving dinner. He was happy, watching a little two year old that was here, and enjoying old friends when he became upset. I believe it was because he had a memory of other Thanksgiving and the realization that things have changed. This is part of getting better and becoming more alert. We have started talking about his memories a little, and I think as his word retrieval improves, he will be able to talk about it. One more story about Ross’ speech. On Monday, the therapist asked him what he was most proud of in his session. She waited for an answer, and asked again. When Ross answered, he said, “I don’t know the name.”
Onward and upward.
November 17, 2006--A really interesting update from Betsy:
Ross and his therapists are telling us that he is ready for more independence and that he is very frustrated. I don’t know if it is just because I am more attuned to it or if there is greater frustration is accompanying his increased alertness and being present. He seems to be moodier and more depressed. However, if I persist, I can usually get a laugh and/or participation. Yesterday was a good example. The OT had suggested that I start cooking with him. So, gamely, I had him measure beans on Wednesday. He ended up poring them from container to container, but that was a good start. I soaked them in water overnight. Yesterday morning, after breakfast, he was sitting with his head down, acting half asleep, eyes open and not responding to me. I took his chair into the kitchen (an extremely small space between counters, sink and stove), brought in the adjustable hospital table across the wheel chair and had him help me drain the beans and then add water to the pot. He participated minimally. He wanted to hold the cup of water his way and that put a painful strain on his hand. He did reach into the pot of water and pull out a soaked raw bean to put in his mouth. Then, I had him put a teaspoon into the salt container to get salt for the pot. Again, he put the salt in his mouth. So far, it was not encouraging. Then I gave him a cutting board and a very dull table knife. I helped him put the knife in his hand, and then we started cutting slices of celery (I was holding his hand and helping with direction and pressure). Ross was responding a little bit more. I put a vegetable peeler in his hand for peeling off some brown spots on the celery. Ross loved it. He just kept peeling the celery and it was getting thinner and thinner. Then he started taking bites of the celery in his hand. I was watching closely to make sure he didn’t get too big a bite. We have already been at this for about forty-five minutes. It is time to cut a clove of garlic and an onion. I cut the garlic on Ross’s cutting board, and he wanted to eat it. I left a tiny piece on the cutting board for him. Then I peeled the onion, cut it in half and I helped him cut the onion. I was concerned about the fumes, but he was oblivious to them. By this time, we are using a better, sharper table knife. Ross actually started to hold the knife at a 90 degree angle to the table and he, with a little pressure on the blade from me, was cutting the onion. Of course, he put some of that in his mouth too. We put part of the onions in the bean soup. Lunch time is coming. I took a bowl of cooked chicken out of the refrigerator and gave it to Ross to hold. The frying pan was already on the stove; I opened up the coconut oil, encouraged Ross to taste it and put some in the pan, added the rest of the onions, the chicken, and some leftover vegetables. As soon as it was heated, I took Ross to his table and Jeremiah helped him eat. The reward came when Ross looked at Jeremiah with a smile and said, “I cooked all this”. Ross’s sense of pride was evident the rest of the day. When we took him to the chiropractor, he sat up straight looking out the side windows and telling me when to turn. (Most of the time, he was correct.) He also actually talked more, not just relying on hand movements to communicate.
I spent a lot of time describing our one and a half hour cooking activity because I think it illustrates something I am learning. Sometimes, like yesterday, I know we need to change what we are doing to be more in tune with the new stage Ross is in, and I have no idea how to do it. I often waste a lot of time worrying about it. But if I just jump into it, with a lot of prayer and the idea that I have to get started, then it works out. For Ross, to feel that he is doing something real is important and it doesn’t matter to him that it is cramped, messy or that we end up doing something that is more important to him than the bean soup that he ate for dinner (putting together lunch). I think we stumbled into an important activity that he can build on.
This morning, I went through another episode of his frustration and anger. He knocked his glass off the table, spilling water and breaking the glass. When I asked if he was mad, he nodded yes. I had him wipe the water off the table and then talked to him about his life and not getting stuck. I am sure it was too long, but I felt that I had his attention. It has to be painfully hard for him. Please pray for him as he goes through this important stage of recovery. Please pray for all of us, that we will be given wisdom and energy for the task ahead of us.
November 14, 2006--Betsy just sent me a new update:
Ross’s speech therapy has been changed to Tuesday. Ross slept late; he kept waking up, having some supplements and then back to sleep. He slept until 10:30. He did exceptionally well eating his lunch with the speech therapist. He chewed, swallowed and cleared his mouth without ever coughing or choking. He kept his head turned to the right where she was feeding him, only needing to be reminded once. After speech, I decided to take him to the Santa Rosa Mall to buy some Christmas presents. It is the first time I have taken him to a place like that because I have been concerned he would be overwhelmed. He did seem to be overwhelmed, but as we walked past a shoe store he made a gesture toward some shoes and an exclamation. To make a long story short, Ross chose a pair of shoes, very stylish and soft leather, he tried them on and nodded yes that he wanted them. I gave him the credit card and he gave it to the clerk. (Reminds me of the excursions with him when he was a preschooler.) We then saw Santa’s area for picture taking; window shopped and bought some calendars for gifts. When we started looking at calendars, Ross seemed stunned, but he was quickly back with me to actually choose one of the items. As we moved along, we passed a delivery man with boxes and Ross reached out and asked for food. We took him to the coffee shop where he enjoyed a muffin, the first one since we started the candida diet. One interesting thing that I noticed, Ross had been sliding down in his chair all day, and we would pull him up. Jeremiah pulled him up again before we got in the car and when we arrived at home about forty minutes later, Ross was sitting up straight in his chair. I believe it was because the shopping trip was a pleasure and taste of independence, and he was feeling better.
November 13, 2006--Just got a note from Betsy:
Ross was under the weather for a couple of days, but he is now back to his happy and somewhat exuberant nature. His ability to weight bear with his legs is improving and that makes doing transfers without the lift easier. We are now transferring him without the lift about twice a day, about 10-25% of the time. It still takes two of us to accomplish a transfer.
We had a good session with the OT who trains us and Ross. We are now moving into more goal directed and function based activities. It will be tricky for me to figure out how to get him to the sink for washing dishes and positioned for putting groceries away. But Ross is showing us that he wants to be actively involved in life, and not passively. An example is that on Saturday when the OT was here, he was talking to us about Ross, progress, goals etc. Ross put his head down. Rusty leaned down to speak to him, asking if he liked being talked about. Ross shook his head no. Rusty reminded him to be present, work hard…, a nice pep talk. We noticed afterward that Ross lifted his head and when he could not see Dom, the therapist, he used his feet to move his wheel chair backwards where he could clearly see what was going on and be an active listener.
We have had guests two days in a row, families Ross has known for years. He has really enjoyed the interaction. One family has a little boy and Ross enjoyed him so much. When we sat down to dinner, Ross sat next to me. I was helping him with his food, and he kept asking for more. Finally, he reached over to my plate with his spoon and scooped up a piece of potato for himself. There was also pumpkin pie, his favorite. Afterward, the visiting mom sat down and played a game with Ross. She put pine nuts in one hand, then moved her hands around and the nuts from hand to hand and had Ross choose the hand with the nuts. Ross picked the hand with the nuts each time. The best part of all these events is when Ross’s sunny disposition and laughter come through. His life has been so diminished and he is still plugging away, working hard to recover. He frequently says, “Release me.” Sometimes it is because he wants us to stop shaving him or holding his hand while we are using the nasal spray in his nose, but other times he appears to be saying “Release me, give me back the ability to do for myself”. Onward and upward.
November 9, 2006--I just got a note from Betsy:
Sorry I haven’t written. The start of this update has been in the computer since Sunday, unfinished. I kept meaning to finish it, but there was never time.
Ross is on a roll. During Friday’s PT session Ross sat on the mat, which is currently a little wobbly because we raised the height, and hit the ball with his bat over a hundred times with nearly 100% accuracy. Rusty was positioning the ball in front of Ross and he constantly moved the ball so that Ross was weight shifting way to the right, way to the left, and reaching out to the front. He was able to come back to center every time. He worked completely independently for about two minutes, rested, then hit for another two minutes, rested, hit again for two minutes. On Monday, he jumped to hitting the ball one hundred times with his right and fifty times with his left. The left moves just a little, not explosively as the right does. But that is how he started moving his right arm. But even better, he sat independently, leaning out, then readjusting for a total of six minutes.
On Saturday, Rusty had Ross in the power chair and his skill has doubled since the last time. He went around d the driveway twice controlling the chair all the way and not running off the side. Afterward, when he was back in his other wheel chair, Ben sat in the power chair. Ross said, “Are you me? Am I you?” Then wild laughter.
More later.
Betsy
November 3, 2006--Received a "good news" note from Betsy:
Sorry to have not updated sooner. We have been extra busy and Ross has made a huge growth step. After we returned from San Francisco on Sunday, Ross and I rested for a couple of hours. It was after that, Rusty and I were with Ross and Ross started talking and laughing again, but he we could now understand more of what he said. He asked, “Am I fat?” He also said, “I am worried about my arm; I don’t have strength.” I asked if he meant his left arm, but he lifted his right arm to me. I then talked to him about both arms and we gave him a two pound dumbbell to hold in his right hand, and he did curls with it. He talked about us, “My father…”, “My mother…”, “My sister…”, and “My house.” Unfortunately, I don’t remember everything he said. He did say something about dying twice. He also said “I didn’t do anything wrong.” We had a wonderful time with him and we were sure he would sleep soundly since he had been up since 4 AM that morning. The next morning, we found out he had not fallen asleep until 6 AM on Monday. He slept for two and a half hours and did not go back to sleep all day. I remembered that he had mentioned dying, so I asked him if he was afraid to go to sleep. He nodded a vigorous yes. I reassured him that he did not need to worry, that we would protect him. I reiterated that several times throughout the day. He finally fell asleep at 11 PM on Monday night. He is now back to a regular sleep cycle. He is not as explicit about his thoughts, but we know that we will see it again. He still remains more alert, more communicative and definitely happier, laughing and smiling a lot. He is making improvement in standing, particularly after we use the biomodulator on hip flexors and quads. He also seems to have more control over all limbs.
October 29, 2006--Just got a terrific note from Betsy:
We are just back from seeing Dina Maxwell off on her eight day ride to San Diego. The ride sponsor raises money for disabled athletes. Dina is riding with a picture of Ross in his Hulk cycling shirt and Ross wore that shirt this morning. Dina introduced him to many people and the organization’s leader invited Ross to be acknowledged
before the ride started. Ross was introduced by Dina who told the story of how Ross, an athlete, was run down by an inattentive driver. People were wonderful in their response, but even more touching was that Ross smiled most of the time and when we went for Ross’s second breakfast with Jeremy Nelson (his first physical therapist who met us there with his friend Naomi) Ross was in his element talking, laughing and enjoying food. It was Ross unplugged as they say. I have rarely seen him as energized, happy and communicative since he was injured. All in all it was a very good experience and clearly Ross is now ready for more of the outside world.
October 28, 2006--Just got a note from Betsy:
Sorry, I haven’t written lately. Ross is doing well. The partial seizures have stopped. Ross has been making advances on several levels.He was mumbling and Jeremiah asked if he was in pain. Ross answered, “No, I’m fine.”
The other night, Ross was lying in bed waiting for his bath and the bottom rail was down. Jeremiah and I were talking and we noticed that Ross was moving his left foot and leg off the bed. He did not move the left by pushing with his right, a maneuver I have always seen him use. He then moved his right foot and leg off. All it took was for Jeremiah and me to take his hands and gently pull him up to seated position.
Ross has started throwing a tennis ball for our dog, Jo. He doesn’t just throw it. He watches the dog, making her wait, sometimes pretending the beginning of a throw. His ability to release the ball has increased and he is actually now th