July 27, 2008 A note from Betsy:
      The last two weeks have been much better for Ross. His digestive system seems to have calmed down. Since the lab tests were normal, I think that it is because the new enzyme regime is helping. I need to spend some time determining what the next step will be. There is a product that is specifically designed for reduction of mucus (i.e. nasal congestion), but I want to go slowly. Ross is less volatile and he actually seems to look forward to therapy (exercise). The OT started having him walking on his knees between the parallel bars two weeks ago. It is exciting to watch as Ross moves first his right knee forward and then the left with his hand on the bar. Sometimes we have to provide just a little lift on the left shoe to overcome the friction, but more and more he does it all. He started out walking one length, about six feet. Yesterday, he did five lengths.
Ross is also talking more often and, of course, it is frequently about food. Rusty’s tomatoes are ripening and Ross enjoys them immensely. I chop them up and he eats them with a spoon. It is also raspberry season again and he is starting to prefer a spoon for eating them because they are slippery between his fingers.
Last weekend I noticed that the pupils of both eyes were consistently the same diameter. That is the first time since he was hurt. That has pretty much continued, but I notice when he is tired or confused, the left one is again larger than the right. Yesterday, I even noticed that both eyes seemed to be tracking together. Ross stared at me when I asked if he was seeing one or two. As I write this, I realize I was moving too fast and should have asked only one question. For example, “Do you see two of me? “
I have saved the best for last. Yesterday, the therapist had Ross stand against a wall without support. He did it four times then. Today, he did it again. Rusty and I are so excited and Ross is very proud of himself. This is a huge accomplishment.
If you are on our mailing list, look for the new letter to arrive soon. The photographs of Ross enable you to see the changes. We are so grateful for his progress. Thank you to all of you who make it possible. Onward and upward!

July 11, 2008 An update from Ross's mom:
We have been very busy with visitors, appointments and life’s unexpected glitches. Ross’s sister Liz and her family were here for a week. Initially, Ross was very quiet, and Liz was saddened to see that Ross was not as responsive to her or as verbal as he was in December when she was here. However, Ross delighted in the children and laughingly watched them. The children played ball with him, accompanied him as he drove outside and stacked cones with him. He occasionally became agitated and showed it. It was upsetting for the children, and I was able to say that it makes me sad when he reacts with anger and fear too. We all recognize that it is not personal, and it is another example of how this tragedy as affected all of us. However, their experience was mostly positive. And Ross, told Liz, “I love you” just before she left.
Ross’s digestive system appears to still be recovering from all the antibiotics. The doctor is doing some tests, and we are waiting for the results. I have been able to find some books on digestive enzymes and I have slowly increased the enzymes Ross takes before each meal. It has made a difference and I think it is making a difference in his cognitive functioning. For anyone interested, the author of the books I have is Karen DeFelice. The one I really like is Enzymes for Digestive Health and Nutritional Wealth. Her web site is www.enzymestuff.com . I am realizing how critical enzymes and the digestive system are for all of us, but even more so for the neurologically challenged.
Ross’s progress in therapy is wonderful and his therapists are very pleased. He is walking on his knees, moving himself around on the floor, climbing on to the therapy table from the floor and rolling from his back to his side in bed. While his motor skills are progressing, he still isn’t talking as much since the last grand mal seizure on June 10. When we saw Ross’s neurologist yesterday, he suggested that Ross might be thinking more and, as a result not speaking as much. It does seem that he is more thoughtful and he does communicate his desires. Another thing I noticed is that he is not constantly asking for food. We have gone to church the last two Sundays and he didn’t ask for food either time until the very end. Before, he would have been agitated and asking for food from the beginning. He is also actively reading printed material. The doctor handed me some information yesterday, and Ross spent a few minutes looking at it as if he were reading. One other thing, the neurosurgeon said that the last CT scan on June 20th showed smaller ventricles. That is a great report. We have always been told that they are big, because of the injury related damage to his brain. But Rusty found a report online that indicates that on a scan, large ventricles because of hydrocephalus can’t always be distinguished from large ventricles because of damage. Rusty and I feel that Ross is on an up slope again. Onward and upward.

June 15, 2008 (I'm posting this from Montana--just received an email from Betsy with an update. Wifi is EVERYWHERE!)
    You may be on the road again.  I received your e-mail in the midst of making a birthday dinner for Ariel.  Ross enjoyed the card that I put together for
Ariel. I had found a Mary Engelbreit file folder that was so like Ariel when she was a little girl and I typed up a verse about Ariel and Ross for the
inside.  He laughed when he saw the folder, and instead of writing his name on the inside, he drew a decorative line around the whole verse.  
    Later he watched the movie "Hairspray" on television.  I went in and sat with him and he laughed continually at the movie.  At one point, he turned
and looked at me as if to say, "Isn't this outrageous."  It is so wonderful to have his laughter back.
    Last week at the Hill Climb there was another little toddler, just like last year.  Ross loved her and laughed with joy as he watched her.  At one point,
her mother lifted her to see Ross, and Ross asked, "Are you a woman?"  I think that was an example of his difficulty in retrieving words.  He was
thinking girl, but woman is what came out of his mouth.
    His speech skills have been better until last Wednesday when he had another grand mal seizure.  This time, articulate speech is slower to return.
However, he is doing well with crawling with the therapist and standing on his knees.  We are also back to having him stand for a half hour several
times a day.  We are hoping that getting back to standing a lot, something we couldn't do while the bone plate was missing, will help his brain to send
signals to his left foot and leg about the correct position.  The orthotics that he wears have been rubbing and creating blisters.  Ross saw a very good
podiatrist last week, who pointed out that that the problem is that Ross's ankle keeps turning.  There are surgical solutions, but we are committed to
using weight bearing and positioning first.  There is also the question about the shunt.  Too high pressure inside the ventricles can interfere also.  So, I will call and start the process of securing an appointment for a CT with sedation.  Comparing a new CT with the previous ones will help the
neurosurgeons determine what is going on.


May 30, 2008: I just received a lengthy update from Betsy:
During the fourteen weeks that Ross was without the protective bone on the left side of his head we wondered what the effect on him was. We are now beginning to understand because of the changes we see in him. As usual, there are ups and downs, and my family tells me that I frequently emphasize Ross’s gains and may give the impression that he is more independent than he is. That said, he is standing up by himself again. I mean going from seated to standing. He still needs support not to fall. We only have to put our hands under his elbows and up he comes, straight and tall. We have also seen him, when seated on a bench, lift his butt off the bench and scoot back. His walking, with assistance, is better than anytime since late January when he had the bone flap removed. He is taking big steps with his right foot and lifting the left foot up off the floor. His strength and stamina are still low and he tires easily. This week, the Physical Therapist even had him on the Total Gym, pushing himself up with his legs. He is reaching way forward, even in his wheel chair, to reach things and even twisting to reach or retrieve things that are on his left side. We also notice that when giving his meds and supplements (we put them in a green vegetable puree), he turns to the left and keeps his head there for us to put the spoon in his mouth. Before, he would turn his head to the left, but then move his head to the right as we were trying to get the puree to his mouth. I hasten to point out that he feeds himself at meal time, holding the spoon and controlling the whole process from scooping to eating. We do encourage him to take smaller bites when he is frantically stuffing himself. He is also holding his glass himself, checking to see how much fluid is still there, and when the glass is empty, releasing the cup. He is even trying to set the cup down on the table.
For me, the most striking improvement is his speech and communication. When we drive he frequently tells me to turn right. This week, he is also telling me to turn left. Yesterday, on the way home from an appointment, he correctly told me which way to go through four intersections. He pointed right, then straight, then left, and then another left.
A couple of nights ago, he wanted to sit in one of the easy chairs. The caregiver helped him into the chair (Ross did most of the work to stand, but the caregiver held him as he turned and helped him to sit without falling). After about twenty-five minutes, Ross became very animated and I could see in his expression what seemed like a precursor to a seizure. I called the caregiver to come help Ross into his wheel chair. I said, “I think he is feeling tired and overwhelmed.” I was surprised when Ross immediately gave me an affirmative nod. The other change is more complete sentences. Here are a few examples: “Open the door.” “Turn me around.” “Don’t touch my mouth.” “I can not wait.” He said to Rusty, early in the morning, “Waking up.” Yesterday, he said, “I have a face.” I think he was referring to his face and head feeling normal again.
Rusty just came in as I am typing this and told me that at the end of Ross’s Occupational Therapy session he was pointing to the child’s basketball hoop that we have. He has never used it as it is intended; it has just been another place to put a gummy so Ross could reach for it. The OT gave him a ball and put it so that he could hold it with both hands against his chest. His right arm moves easily, but not the left, but Ross was able to get the ball into the hoop seven times. This was a first for Ross and he initiated it all on his own.
Rusty received an e-mail from one of Ross’s college housemates. I printed it out and showed it to Ross while I read it. He definitely was reading parts of it and put his finger on his name and said, “Ross”. He seemed to understand who had sent the e-mail. So, I have an idea. Those of you who knew Ross please send him an e-mail at [email protected]. Also, it you can send your picture to him at P.O. Box 1509, Glen Ellen, CA 95442, I want to make a friendship poster with him.
The sixth anniversary of Ross’s catastrophic injury will be next Tuesday. The thoughts, prayers and financial support of all of you wonderful people enable us to provide rehabilitation for Ross and we are blessed by your faithfulness. Once again, we are aware of the awesomeness of this endeavor, hundreds of people joining together with us to give a functional life back to our son and, in the process, showing others that it is possible. Thank you from the bottom of our hearts.
For those of you who will be at the Ross Epic Hill Climb on June 7, Ross will be there. We look forward to seeing you.
Love,
Betsy
Ross’s proud mother

May 23, 2008: Betsy added her own update:
May 23, 2008: The surgery itself was fine, but we had a scare afterwards because Ross didn’t wake up for almost 24 hours after the surgery. (They think that he had a seizure during the surgery, something that happens with patients with a seizure disorder, and he was recovering from both the seizure and the anesthesia.) They finally sent him to the Transitional Neuro floor that night where he had a private room with a chair that made into a bed (for me) and I was allowed to stay with him the whole five days. The nurses and other staff were wonderful and I really appreciated that they realized how important it was for me to be with Ross: showing them how to use Ross’s feeding tube, bringing our own supplies for things they don’t routinely use, and helping to calm him all the times during the day and night when they had to draw blood, and explaining his needs or behavior. While it is a neurological floor, most of their patients are much more able to function normally.
We did learn that the adjustable shunt that drains the fluid from the ventricles is stuck and we will have to determine if that is important over the next weeks and months by whether Ross returns to baseline. If the current shunt setting appears to be hindering his progress, we will have to go back and have the valve switched out, but that will be a relatively simple procedure. Ross was really a champ and he was so excited to be coming home, that when they told us today that he was going to be discharged, he started moving around in the bed and putting his legs on the railing. He is tired, but obviously happy to be home.

May 23, 2008 9:00 PM: Betsy just called to tell me they are home and Ross is doing much better tonight. The doctor decided against replacing the shunt mechanism at this time because he felt Ross has had enough anesthesia for now, but when he goes back in two weeks to get his stitches out, they'll do another evaluation to check the pressure and see if it should be replaced then. It would require an overnight stay at the hospital. Betsy said she and Rusty were comfortable with the decision. They'll be able to tell if the pressure is affecting Ross cognitively by how well he improves over the next couple of weeks. Betsy promised an update once she gets some rest--it's been a very long week.

May 21, 2008 8:30 PM update: Betsy called and said that x-rays showed the shunt mechanism to be malfunctioning severely enough that it will need to be replaced. It is allowing pressure to remain much too high on Ross's brain, which probably explains a lot of the problems he's has been having over the past few months. It had supposedly been reset to 50 but x-rays showed it at 90, which means pressure was almost twice as high as it should have been. This will require more surgery under anesthesia, and Betsy said they're hoping they can get it done immediately, while Ross is still in the hospital.

May 21, 2008 10:00 AM update: Betsy spent another night at the hospital (Moffett Hospital, UCSF) with Ross. He's having some pain but is more alert and definitely in better shape than yesterday. He had an x-ray last night to check on the shunt, but Betsy hasn't seen the results yet. At least he's eating a bit today and seems to be feeling better. She's hoping he'll be able to go home by Friday, with any luck. Thank you for your prayers and healing thoughts for Ross and his loved ones.

May 20, 2008 9:00 AM update: Betsy called to say that she'd spent the night in Ross's hospital room, but he's still not awake following surgery twenty-four hours ago. She said the doctors did not seem overly concerned, though they do suspect he might have had a seizure during the sugery, which would account for him being overly sleepy. Your prayers and healing thoughts for Ross and his loved ones are definitely appreciated. I will update as soon as I hear more from Betsy.

May 19, 2008 2:30 PM update: Betsy just called. Ross is out of surgery and has been in the recovery room for a few hours. Once he's awake, he'll go back to his regular room. He's doing well, but Betsy didn't think he'd be coming home Wednesday as she'd originally hoped. I will post when he finally leaves the hospital, but the surgery went well and the prosthetic skull flap has been implanted to replace the missing piece that was removed due to infection.

May 18, 2008--received an update from Betsy. She's been down with a bug, which is why we haven't heard from her:
Again a long time since I wrote. Where does the time go? Ross continues to progress with his left hand. For example, he now regularly holds both hands side by side on his chest when in bed. He is also still using his right hand to open the fingers of his left hand. He is not back to baseline in walking. He becomes tired very easily and has more clonus (uncontrollable shaking or spasms) in his legs. His eating and drinking are great. He has truly mastered holding his glass and drinking from it. He even hands the glass to us when it is empty rather than just dropping it. I watched him eat alone today. He enjoyed the autonomy and I realized we need to let him eat alone more. His vision seems to have improved. I have seen the left pupil just about the same size as the right a number of times and he does not appear to be seeing double has much as before. Cognitively, he is quieter except when he has a spell, usually at the end of the day, when he is very irritable and confused. Although, I do notice that sometimes my funny, light response to anger produces a smile on his face. There are times though when he surprises us. I found a picture of his friend Jon and his wife and showed it to Ross. He smiled and said, “That’s my friend.” Tonight, after he was in bed, he said, “Talk to me.” He has started to match Uno cards by number again. When the wind was howling all night on Wednesday, he yelled at the wind, “Stop the noise!” One thing he has been doing for some time is when I mime “I love you”, he responds by pointing to himself and saying, “I love you.”
We finally had the PICC line removed. Everyone said it should have come out sooner. It was beginning to look irritated or festered and I was afraid it would prevent tomorrow’s surgery. The home nurse removed it on Friday afternoon and the insertion point is healing very nicely. It was very long and apparently of large diameter. I was struck by the length, maybe close to 18 inches. We were concerned about keeping Ross calm during the process. However, he had another long seizure, again milder than usual, right before the nurse arrived. Between the medication and being exhausted, Ross slept through the whole thing. Not my favorite way of sedating him.
Today, he spent five hours in his recliner and enjoyed himself. We watched a movie, the Tour of Italy and sports between lunch and dinner. He was very relaxed and in a good mood. After dinner, he was very tired. Now, at 10:30 P.M. when I want him to be asleep, he is lying in the dark, wide awake.
Tomorrow’s surgery is early and we were told that he will probably come home on Wednesday. Please pray that the surgery goes well and that Ross is not terrified. He was very upset before the sedation for the CT scan took effect a month ago.

May 2, 2008--a new update from Betsy:
After having some wonderful days of talking and working hard, Ross’s therapy session this morning was confusing at best. He was disoriented, weak and he was unable to stand without more support than usual. His right leg, the one that knows how to stand without support, was buckling at the knee. The therapist could only say that it seemed something significant was happening neurologically. He ate well and then we decided to let him rest in bed. Even though he looked sleepy, he did not sleep. Just before getting him up for dinner, he started to seize. For the first couple of minutes, it seemed like an absence seizure. However, since the surgery, we have decided to give him medicine immediately when it seems like more than a petit mal seizure. Sure enough, the absence seizure transitioned into a mild grand mal that lasted more than twelve minutes. It stopped twenty minutes after we gave him the medicine, which makes me think the medicine stopped it. So, we don’t know what happened, except maybe he has a touch of the virus Rusty has, but he has no symptoms. Maybe it was reorganization in his brain. Certainly, this seizure was very different and he was partially alert during part of it. It really seemed that he had more movement on the right side and that he was trying to block the movement of his right hand with his left hand. A similar thing happened with his feet. He is now sleeping peacefully. Please keep him in your prayers.

May 1, 2008--just got another update from Betsy:
I just wanted to share with everyone my appreciation for how well Ross is doing. The house has been filled with the sounds of Ross’s voice for the last few days. He protests being on his stomach, he announces that he is rolling over, he says “I love you’, “pull me up”. All of this is music to my ears. The house is beginning to be filled with happy sounds. I keep remembering those sad days of silence and immobility when our hope kept us going in the face of the gloomy prognosis. Of course, we want much more recovery for Ross, we hope for it and we expect it. But we also rejoice that he communicates with us, and we with him. We are grateful that he works hard in therapy, that he loves to eat, and that he intently watches movies and television. I am even grateful that he is sometimes inappropriate, for I have seen that he is capable of changing his rough language as he recovers. I am thankful for the love of our family and I am thankful for the love all of you share with us. It is a great day!

April 28, 2008--just heard from Betsy. She's been having email issues:
Ross had a rough time after his CT scan. I think it was the sedative causing him to be excited, agitated. He didn’t sleep well for about two weeks and had several petit mal seizures. He actually went almost thirty-six hours with only an hour of sleep. Anyway, this week it seems that he has turned a corner. We were able to cut his hair (except for the caved in side where the bone plate is out) and it has made a difference in his comfort. The helmet is so hot and the sweat pours from under the helmet when he gets warm. He is definitely more relaxed and he moves his left hand and arm volitionally. The dexterity of his right hand has greatly improved and I think we will see the same on the left. Anyway, today when we were driving home from speech therapy he was very quiet. When I pulled up in front of the house, he said quietly, “Are we home? I answered that we were and he said, again quietly, “Wa who!”

April 15, 2008--an update from Betsy on the CT scan:
The CT scan went well yesterday and Ross did well with the sedation. It was very clear though that the CT would have been impossible without sedation. He seemed to have a small petit mal seizure last night and he is very tired this morning (I remember being very tired for a few days after a procedure that required sedation). He did give me a big smile when I kissed him, he kissed me, etc for about three rounds. We have the regular therapy sessions scheduled for the day. I trust that things will go well.
Onward and upward.

April 13, 2008--just got a late note from Betsy:
Sunday night
Ross has had a wonderful few days. Friday was a good therapy day and we loved watching his mastery taking off a screw top lid. I heard him exclaiming “Wow, wow!” on Saturday and I went to check. Ross had asked the caregiver if he was going to give him a new body. The caregiver answered that he would. Ross then said, “Wow, wow, wow.” He was very jovial all day long. We had a very poignant moment with Ross and Ariel. They used to have so many little games together, and she was working through one of them, just a repetitive phrase and hand movements. Ross became very serious and he seemed to be trying to remember. He then became a little unsure and asked us to leave. I don’t know if that had anything to do with his waking up at 3:30 A.M. for three hours, but he has been more subdued today and tired. He has become more cooperative in brushing his teeth and we are able to get to the back of his mouth—something we have been working on for five years.
Tomorrow morning is the CT with sedation-we have to leave early, but that is just as well because Ross can’t have food after midnight tonight. The tentative date for the surgery to replace the bone flap is May 19. Thank you for your thoughts and prayers.

April 10, 2008--a much more positive note from Betsy:
Hi,
I just wanted to let everyone know that Ross had a wonderful day. He has been smiling and laughing today, more than since the last surgery. He was talking in whole sentences and very appropriately. While having a massage, he said, “Let’s everybody go into the kitchen.” He also said, “Stand up and I’ll follow you.”
We watched a fun old movie by Frank Capra tonight and Ross watched intently and loved it. He was laughing during some of the funniest scenes. This morning, for the first time since the last surgery, Ross asked Rusty, “Are you my father?” Later, he asked, “Are you my dad?” Later tonight, he said, “My father has always loved me.!” When I talked to him about how much better he seemed to be feeling and that I thought that he had been getting too much medicine, he nodded as if he agreed. This makes me think that he does understand what I am saying. Also, in therapy today, I watched him respond to many verbal instructions from the therapist. I do believe that the reduction in Tegretol is evident, even in this short period of time.

April 8, 2008--Just heard from Betsy:
We are going back to UCSF for the sedation CT next Monday.
Once again, Rusty and I were very worried about Ross over the weekend. He seemed so tired, afraid of being hurt, and depressed. One night, he was again looking around the room rather than trying to eat. We hustled him into bed in case he was going to start a seizure. He fell asleep as soon as his head was on the pillow and slept for over an hour. When he woke up, he said, of course, “Food!” He was so tired, that he couldn’t even respond when I asked if he were in pain. Sometimes it seemed that he had a sore throat, and he often let me use the nasal spray in his nose. He definitely was not communicating. I also had noticed when the massage therapist was here that Ross couldn’t sit up on the edge of the mat. He has been doing that for over a year. When doing transfers from bed to chair, his feet were getting tangled up. We realized on Sunday that we all had been feeling a little off and that maybe Ross had a virus. Yesterday, he felt better, but walking a total of about 15 feet exhausted him. However, he unscrewed the vitamin bottle with gummies in it. Not only did he unscrew the lid, look for the gummies, eat them and then replace the lid and screw it back on several times (Letha, the therapist helped him put the bottle in his left hand, but the right hand action was all Ross), but he screwed the top on tight and then opened it again. Last night, he intently watched Dancing with the Stars, but he wouldn’t smile or even let me touch him.
This morning, I heard Ross protesting and I went to see what was happening. He was being shaved and was very verbal in his protest. When the caregiver had finished, I told Ross he was handsome. He smiled and turned to the caregiver and said, “I love you.” There have been many times today when he has smiled. We were listening to some funny interaction on the radio and Ross laughed with us. However, he was so tired at Speech therapy that he wasn’t clearing his mouth of food. He only was able to eat half of his lunch. We came home and put him in bed and he slept before finishing his lunch.
Another possible reason for Ross demeanor was that he had too much Tegretol in his system. Tegretol is an antiseizure medication that Ross takes. When he was on antibiotics, his blood levels of Tegretol had dropped too low. The doctor had increased the dose until the blood levels were appropriately high. However, since he stopped the antibiotics, his blood levels of Tegretol had started rising. I knew that we would soon have to decrease it. On Sunday, I checked the internet for symptoms of overdose, and it seemed that Ross might be experiencing some of it. Yesterday I took him to the lab for a blood test, and this morning the doctor called to say the blood levels were now too high, so we have decreased the dosage. I suspect that we will have to go through this again after the next surgery because the doctor at UCSF will surely have him take more antibiotics. So, in summary,I think Ross was dealing with both a virus and the effects of too much Tegretol and he will be feeling better.
Thanks for your love and support.

March 30, 2008--received a long note from Betsy:
Ross is continuing to recover from this last surgery. The doctors did only have him take the antibiotics for six weeks and the time has passed quickly since he had his last dose. Since he still has the PICC line until the next surgery when they replace the bone flap, we have to maintain the line by flushing it once a day, which is really not a hardship. He even expects it now and does not become alarmed the way he did when we first brought him home. During the first couple of weeks home from the hospital, we were amazed that he was bouncing back so fast. Then about three weeks ago, he started to sleep less and have more pain. I also noticed that his strength and stamina in standing and walking were decreased. One day he walked about ten feet, rested, then walked another ten feet and was exhausted. Rusty and I were also concerned because he was not laughing or smiling, and often his left eye was either closed, wandering, or the pupil extremely dilated.
A week ago, I decided that he was bored and so we took him to the Farmer’s Market. He was excited to see food and have people offering him samples. It was the ideal place for a man who loves food. After that, we went to In & Out for a burger, another happy event. Our Easter dinner the next day was not until 7 P.M., an hour after his regular meal time. We gave him some food at six and then he ate with us at seven. He loved it and started to smile, talk and laugh, as well as eat. He went to bed a happy camper. The following day he had reduced energy and a severe headache. We gave him pain medication right after lunch; he fell asleep and slept till ten the next day, only waking briefly twice to eat. The next day he felt much better and did very well in both physical therapy and speech therapy. He is continuing to do well when seated, and reaching further than before to reach the gummies. He is also becoming more proficient in opening bottles. We are using the standing feature of the wheel chair to help him build strength in his legs; we have him stand for up to thirty minutes at a time. Then, he had a long (about six minutes) absence seizure on Thursday evening and was very agitated afterward, but as usual seems to be none the worse now.
He has said some interesting things in the last couple of days. Yesterday, he asked the caregiver if he had a brain. Then Ross said, “I have a brain. I need a body.”
Earlier today, he said, “My mother hates smoking! I never, never, never smoke.” As he was saying this, he wagged his finger back and forth. Later, at lunch, he sneezed and he looked at me with a smile and said, “I sneezed!” One other new thing; I went into his room with a cup of tea. He wanted the mug and actually held it to drink all the tea.
We take Ross back to UCSF in two weeks to get a CT (under sedation) in order to measure the skull for the prosthetic bone flap, and the surgery to put it in should be three to four weeks afterward. Hopefully, we will have Ross home, skull intact by mid-May.

March 13, 2008--an encouraging update from Betsy:
Well, here it is March 13. I started to write out a draft a week ago or so, and didn’t get back to it. This is a red letter day! Unless I hear differently, I hooked up the last bag of IV antibiotics for Ross tonight. He has become compliant about the flushing and hooking up. I am impressed with his calm watchfulness as I work with the IV. It has been five weeks since we came home; it seems forever and also just a few days ago. Ross definitely had more headaches since the grand mal seizure. He also seems to have less double vision. He has been walking more and speaking more precisely, but he has less stamina than before. For the last few days, he has not been going to sleep until 1 or 2 in the morning. A few days ago, he was awake until 5AM. Also troubling is that his blood pressure is higher; sometimes related to pain, but not always. I am glad that we are at the end of the antibiotics because I am sure that they are making him feel bad. He has been taking probiotics three times a day. I have also ordered something else that one doctor told me about for antibiotic detoxification. While antibiotics are necessary in cases like this, they can wreck havoc later if we don’t treat the resulting fungus. Thanks to a friend who told me about Doug Kaufmann who has a TV program, Know the Cause. I just purchased one of his books and I am following the nutritional guidelines with Ross in order not to feed the yeast and make it worse. Fortunately, I can give him blueberries which are in the store now and he happily loves to eat them. I put them in a bowl on his lap and eating maybe half a cup full takes him half an hour, picking each berry up and putting it in his mouth. The OT tells me that putting his fingers in his mouth facilitates connections in the brain, so again it is therapeutic.
Ross is very articulate these days, especially his fear of being hurt. It is to be expected, of course, but it also makes me think that he has not forgotten the last weeks and remembers that I told him he had brain surgery. I am still hoping that he will be able to get his CT scan sooner than a month from now. I have to keep calling back in case someone has canceled. Thank you for your love and support.

March 2, 2008--a note from Betsy:
Twenty minutes after I sent the update on Wednesday, I walked into Ross’s room to find him staring off to the right (an absence seizure of about five minutes) followed by a Grand Mal seizure lasting about six minutes. Afterwards, he fell soundly asleep. The next day, he did not seem to have been adversely affected except for having a big headache. He worked at reaching far while sitting unsupported on the therapy table and even walked a little during therapy. In the few days since, he still is having headaches, but that could be post surgery. The amazing thing is that he is smiling so much these days, and even when he is annoyed with us, he is quieter about it. Another change is that he is able to concentrate for fifteen minutes or more. One of the therapists asked him to work on opening his hand more and twenty minutes later he was still working with his hand. Today, for the first time, he let me brush his teeth without struggling. I had promised him some blackberries as a reward. He let me brush his teeth and then asked for food.
I googled epidural space brain abscess the other day and found a very good medical article. It was good to read about it and know that Ross is getting the recommended treatment, but I also discovered that the cellulitis on his head is a symptom that is often missed, probably because it seems so innocuous. We are blessed that it did not get into his blood stream or the cerebral spinal fluid. Thanks for your love and support.

February 27, 2008--A note from Betsy:
Well, the answer to clogging IV lines is to have them unclogged professionally. I continued to deal with the problem through the weekend and we finally made our way to an infusion center yesterday. After a comfortable three hours on Tuesday morning while the enzymes placed in the lines did their job, both lines were cleared. Then today, we went to the doctor’s office and had the remaining sutures removed. I have been impressed with how much calmer Ross has been about all of this. He had his first massage today since the surgery and the massage therapist was amazed at his calmness.
He has also been walking more in therapy and today he was stretching and reaching far for gummies. The difference now is that he usually has a smile on his face. As I said before, he also is more interactive. Today, at the doctor’s office, an elderly man in a wheel chair came in and was sitting next to him. Ross looked at him and said, “How are you?”
Oh, one thing I wanted to share. The nurse at the infusion center was interested in Ross, and I was telling him of the progress Ross has made in the last five years. The dear man said, “Well, so in ten years he may have made a big recovery." It’s just that it is so slow. His comment made my day. That is really where my hopes and dreams are, but many people are afraid to think it and even more to express it.

February 22, 2008--If you're online, Betsy wrote at 5:30 a.m.:
Ross just clogged his IV line while getting a dose of antibiotic. Thankfully, I was able to flush the line with saline, but initially the solution wouldn’t go in. The alarm on the pump alerted me. Does anyone have experience with this? I am going to call the pharmacist at UC tomorrow morning to see if I can resume giving Ross some of the supplements they told me to stop because of possibly thinning his blood too much after surgery. Otherwise, he is doing very well. [email protected]

February 21, 2008--a note and new picture from Betsy of Ross walking:
Greetings,
Life seems to be settling down in our household. We have a new (to us) IV pump and it seems to be functioning properly. I pray that we really do have only three weeks more to use it. I am thinking that the doctors may leave the pic line in until after the next surgery, sometime in May. If that is the case we will still be maintaining the line daily, but the constant scrutiny to be sure the pump is functioning properly will ease.
Ross, as usual, is facing his challenges with courage. Monday, he walked in therapy. We set the chair about 9-10 feet away from the mat where he was sitting. Over the next hour, he walked that distance with someone on each side, eleven times and often lifted his left foot by himself. With some exercises, like reaching to get a gummy bear, he asks us, “How do I do it?” and after awhile with silent demonstrations of how, he does it.
Yesterday he told me, “I am cold!” He continues to speak in a more conversational fashion. He has been sleeping very soundly through the night. Last night, he yelled “Go home” over and over in the middle of the night. We think he may have been dreaming. The nurse started to remove the sutures. It is not easy for Ross to hold still for such a long job. We will try to finish it today when the nurse comes.

February 16, 2008--an update from Betsy:
Life here has been too focused on whether the IV pump is working properly. The decision has finally been made to bring in another one, and hopefully we don’t have to wait until next Tuesday. The biggest problem is that when it works erratically, it can affect Ross.
The good news is that Ross is recovering what he lost by being in bed. One therapist said the rule is usually one week for every day in bed and that Ross is recovering faster. He actually walked four steps yesterday with much more support and difficulty, but he did walk. His chewing and swallowing are not as good, but I am sure that in a few weeks he will have recovered that. He stands up beautifully at times and at other times it is a struggle. He tires more easily these days, but he is experiencing less pain in his head. I am so proud of him for working hard in therapy, even when he thinks he can’t do it. In sitting and reaching and placing his feet, he is doing very well.
There are some improvements that we are noticing that must be related to cleaning up the infection in the epidural space – in fact, I wonder if toxins weren’t making their way into other parts of the brain. The miracle is that there was no infection in the cerebral spinal fluid or the blood. Ross is so much calmer and while he is not saying as many words, he seems even more interactive. He is sleeping with both legs drawn up (not just the right leg as before), sometimes side by side, other times in the froggy position. He was playing around yesterday with legs drawn up and bridging, making it difficult for the caregiver to work with him. He is also moving his body in bed more and in different directions. He appears to know that he had surgery on his head and frequently says, “Don’t hurt my head!”
Ross and Jeremiah like to watch Boxing on television and he has really been enjoying that, laughing and punching the air. Onward and upward!

February 13, 2008--a long message from Betsy:
Ross has been home six days and we are beginning to adjust to the routine of IV antibiotics. This means Ross is attached to a machine that administers the medicine 24/7. Yesterday was my first day of changing the bag, flushing the lines, etc by myself since we had home nurses come in for five days. It was nerve racking because I am so afraid of something going wrong.
Ross is easily tired and is not back to walking yet, but after surgery and two weeks of very little movement, we all think, including a therapist, that he is doing well. His speech is more conversational, his vision seems a little better, and he is moving both his left arm and leg more. We have also noticed that he is sleeping better and he is less nervous. I think he has probably been fighting this infection since last summer and I am grateful that his body cried out for help (in the form of those grand mal seizures) 2 ½ weeks ago.
As for the infection and the surgery, some of the doctors have said they find it hard to believe that Ross had an infection that was dormant for five years and then started to grow again. Others say it can happen. I believe, and two doctors believe this, that he had an infection in the bone flap (part of the skull) that was removed and replaced nearly six years ago. The bacteria that cultured from the epidural space of the brain (above the dura) was Pseudomonas and was cultured from Ross’s lungs when he had pneumonia in 2002, a couple of months after he was hit. The bone flap culture report had not come back when Ross left the hospital, but if it is Pseudomonas that should be a confirmation. After cleaning up the site of the infection (which the neurosurgeon said did not look severe), Ross’s scalp was stitched up without the bone flap. Because of this he has to wear a helmet whenever he is out of bed. The plan is for Ross to take IV antibiotics for another month.
The phone just rang and it was the Neurosurgeon’s assistant saying that the required CT with sedation cannot be scheduled until April 14; therefore, they can not replace the bone flap until at least three weeks after that. I am so disappointed because that is a month later than we had thought. There have been many blessings throughout this whole saga and also in the last few weeks and this delay may very well be providential, but I am in tears. Please pray for us.

February 8, 2008 9:00 p.m. I just called and talked to Rusty. Ross got home around 5:00 p.m. yesterday and settled in. The home care nurse came by to check on everything and got Ross's antibiotics started. The shunt is properly adjusted and in about two months, once the antibiotics are over, Ross will get his prosthesis. In the meantime, he's got his helmet and can return to regular activities. Tonight he got to go outside and take a spin around the driveway in his powerchair, which always makes him really happy. He's also moving his left arm and bending it in a manner he's not been able to do before. Things are looking great. Thank you all so much for your prayers and healing thoughts, and your amazing support.

February 7, 2008 10:00 a.m.  Betsy called this morning to say that it's still looking good for Ross to go home today after his 1:00 p.m. antibiotic. Will let you know as soon as he's home.

February 6, 2008 7:30 p.m. Betsy called a little while ago, but we had such a bad connection it was hard to understand her. She did say that it looks as if Ross is going home tomorrow after his 1:00 p.m. course of antibiotics. The results of the X-ray to check on his shunt showed that pressure had risen from a normal of 70 up to 90--neither of us is exactly sure what the numbers signify, only that 90 is not good. They were able to adjust it so that it's working properly, but Betsy said she'd been concerned over the last couple weeks because Ross's cognitive development seemed to have slowed. Once the shunt was adjusted, he seemed much better. At one point when Betsy was helping him to get into bed, Ross said very clearly, "I don't want you to help me."
     If I hear back from Betsy tonight, I will update further. Thank you all for your prayers and support. It's really amazing he's finally going back home.

February 5, 2008 8:00 p.m. Betsy just called and said that, at this point, it looks like Ross will be going home on Thursday. He'll have to have a home nurse checking on him, as he'll be on an IV drip for six weeks, but I know Betsy and Rusty are anxious to get him home. His caretaker, Jeremiah, and his wife came by to visit today, and Ross was really glad to see them. Betsy said he kept saying, "Go home. Go home," which means, of course, that ROSS wants to go home! He had a rough morning, waking up scared and disoriented, but Betsy seemed to think it was because he was in pain. He's had some pain medication during the day and Betsy said he did much better after he'd taken it. I'll update when I hear more, but thank you so much for your prayers and support. It's been a tough ten days.

February 4, 2008 5:00 p.m. Betsy called to tell me that Ross had the surgical drain removed this morning and was moved out of ICU and into a "regular" room, which he seems to like very much. He had another partial seizure this morning and tests showed some fluid accumulation, so they'll be checking his shunt to make sure it's working properly. Betsy said he was doing really well this afternoon. Thank you so much for your prayers and healing thoughts, and I will update as more information becomes available.

February 3, 2008 10:45 a.m. I just talked to Betsy:
      After Ross's really good day yesterday, he was awake most of the night. Before she left, Betsy said she had a feeling he might have a seizure, and he did have a small one, described as a complex partial seizure, around 4:00 a.m. this morning. Because of that, the doctor has ordered more tests and results won't be available for a couple days, which means he'll have to stay in the hospital at least until Tuesday. The drain is still in and the doctor had made his rounds, so Betsy said she wondered if there might have been something showing on yesterday's CT scan that she isn't aware of. On a high note, last night Betsy was giving Ross some tea in his cup she'd brought from home when he asked to hold it himself. She said he finished it while holding it on his own, something he hasn't done since the surgery. Thank you so much for your continued prayers and healing thoughts for Ross. I will update as more information becomes available.

February 2, 2008 4:00 pm Betsy just called from UCSF.
Ross had a good day. He smiled a lot and laughed and was feeling much better. He had a CT scan this afternoon, and if it  looks good, his final drain will be removed tomorrow and he'll be moved out of ICU and into a regular room. Betsy is hoping he might get home by Monday or Tuesday. He's got a helmet now and that means he can get out of bed. He'll remain on an IV drip of antibiotics for six weeks, then he has to return to the hospital and have the prosthetic bone flap replaced to protect his brain. There are still no cultures available on the infection, but Betsy said his seizures and the sores along the scar in his scalp started a few months ago. It was around the time they started weaning him off one of the drugs he was on that was affecting his personality and making him act aggressively. It's such a horribly delicate balancing act  with drugs that can either help or cause more problems. Betsy said they may never have all the answers as to what has caused the infection. At this point, though, it's just really good news that he's getting better each day. Thank you all so much for your prayers for Ross and his family. You have no idea what an amazing source of strength you are.

February 1, 2008 4:00 pm Betsy just called from UCSF.
It sounds as if today was totally exhausting for everyone. Ross's regular IVs have not been working well and the doctor ordered a central line--a deep vein port so that he can have blood drawn for tests and have his antibiotics for the infection delivered at a consistent rate. It's a very painful procedure and Betsy said it was really traumatic for Ross to have it inserted in the vein in his arm. He was absolutely terrified. She said he started to cry--and for the first time since he was injured, he cried actual tears. He said he wanted to go home, that he didn't want to die. I can't imagine how difficult this must be for his parents, as well as for Ross, but he is definitely doing better. It looks as if he'll be moved to a regular room in the neurosurgery wing and then should be going home the middle of next week. He'll need at least a five week course of antibiotics. Please remember Ross and his family in your prayers.

February 1, 2008 9:20 a.m. Betsy just called from UCSF:
Betsy just called to let me know that Ross was sleeping soundly today after a pretty miserable day yesterday. He's in a lot of pain and she's relieved to see him relaxed and asleep after such a long day. The infectious diseases specialist said they found evidence of bacterial infection in the bone flap, which Betsy said makes her wonder if it's been there, latent, for much longer than anyone suspected. I'll update as more information becomes available. Please remember Ross and his family in your prayers.

January 30, 2008 8:00 p.m. Betsy called tonight with an update.
Ross is resting comfortably tonight. He's finally gotten some "real" food, though Betsy said he waited until she arrived to eat any of it. She also said he has been really brave today--he needed new IV lines and as much as he dislikes having them inserted, he handled it well. He's running a fever, but that's not unusual following brain surgery. They're still waiting on results of the cultures from the infected bone and the epidural layer of skin, but there is an infectious diseases specialist working on Ross's case and Betsy feels very confident she and Ross's neurosurgeon will find the answers they're looking for. I will update tomorrow if we have anything new to report. Thank you all for your wonderful notes and your prayers. Ross's family appreciates your kindness and your amazing support.

January 30, 2008 10:10 a.m. A brief update from Betsy:
       I just called ICU. Ross is more awake today than yesterday and in pain. The nurse was just giving him something for pain. He did drink some apple juice, but refused food. I am hoping I can coax him to eat when I get there.

January 30, 2008 7:30 a.m.--Betsy had time to send me a short update this morning:
I came home to sleep and take care of some business last night. It is 7:30 A.M. and I wanted to be on the road by now, but too much to do.
When I talked to Ross’s nurse last night, Ross was agitated and saying hurt, hurt when the nurse tried to do an assessment. He has a pic line in his arm for IV everything. Apparently the order has come through for normal food which will make a difference. There was an infection in the epidural region and the bone was infected. They are culturing the bacteria and trying to determine the source and if it is also somewhere else in his body. Pray that he makes a quick recovery that puts him at an even better place cognitively and physically. Also, that we are able to make easier for him while he is hooked up to so many tubes and is basically immobilized in bed.
Betsy

January 29, 2008 4:25 p.m.--Betsy just called. Ross is doing better though he is definitely not happy being in the hospital. He's in the neurosurgical ICU at UCSF with excellent nurses taking care of him, but he doesn't really understand what has happened or why he's so miserable. He's starting to talk and asking for food, but he's not getting any at this point. Betsy said she was able to get him to smile, but she had to act really silly to get that reaction! Thank you so much for your prayers and healing thoughts for Ross's recovery.

January 28, 2008 8:48 p.m.--I just had a brief conversation with Betsy. Ross is more alert and was changing his position in bed, moving his legs and trying to get comfortable, so it appears his motor skills, at least what they can observe now, are good. He's looking around and Betsy sounded really positive. I'll have more tomorrow.

January 28, 2008 3:30 p.m.--I talked to Betsy awhile ago. Doctors were getting ready to move Ross to ICU following surgery. The bone flap was full of infection and had to be removed and discarded, so Ross will go home with a helmet for now and then will return to have a prosthesis implanted. Betsy said the doctor seemed confident with the results of the operation, but I have very few details at this point. I'll update as soon as I hear anything.

January 28, 2008, 8:30 a.m.--Betsy called and said Ross is going into surgery right away. Doctors have discovered an abcess under the bone flap--the piece of his skull that was removed directly after he was injured and then replaced months later. They'll remove the bone, clean out the infection and, if they are able to, replace the original bone flap. If they can't do that, he'll need a prosthesis to protect his brain. Check back, and I will update as more information is forthcoming. Ross has been through so much, but he has you supporting him with your prayers and healing thoughts.We can't thank you enough.

January 28, 2008,7:00 a.m. --Betsy just called and Ross is resting now after nine seizures during the night. He arrived at UC at 4:00 AM and his parents are back with him. I will update as more information becomes available. Thank you for your prayers.

January 28, 2008--2:15 AM: From Betsy:
It is 2:15 A.M. Rusty and I came home to collect some clothes and we are going back to Santa Rosa. Ross is being transferred to U.C. sometime tonight. They are waiting for a bed. The CT scan showed a small sub dural bleed (or infection). He is resting right now. I will let you know more tomorrow.
Betsy

January 27, 2008--9:00 PM: Betsy just called. They're in an ambulance on the way to the hospital. Ross began seizing around 7:00 pm and they've been unable to get the seizures under control. He really needs your prayers and good wishes right now. I'll update as soon as I have any information.

January 26, 2008--just got a quick update from Betsy:
Well, it's now Saturday, four days later. Ross is definitely making obvious cognitive advances and is much happier, for the most part. He still wants food constantly and is very demanding. Teaching him to be patient and distracting him was much easier the first time around when he was a child. I have talked to some nurses and they agree with the doctor who sent the cultures in that Ross should have a white blood count. Also, that these bacteria are very difficult to treat even though the sores on his head are looking much better. So, Monday morning I will be on the phone talking to Ross’s doctor and trying to get Ross in to see the doctor who will be Ross’s neurosurgeon (he was away last week).
Ross said some wonderful things this morning-wonderful because they show that he knows there is a difference between himself and others. First, he asked me, “Are you my mother?” When I answered yes, he said some things I didn’t understand and then he said, “I am a brother at home!”
When Ross asked his dad, “Who are you”? Rusty said, “Who do you think I am?” Ross said, “You are my father.” He then said, “I am not you. I am me. I am not you. I am Ross J Dillon.” Then Ross spelled his whole name aloud.
Life goes on!

January 23, 2008--sometimes I wonder about this! I was just picking up the phone to call Betsy and ask for an update when one arrived in my email. Here's the latest:
Life has been exciting here. We took Ross to see the new doctor and she sent a culture from his scalp to the lab. It took from Tuesday to Friday to get the lab results- two different bacteria growing. On Friday, the doctor called me on my cell phone as we were going to the hospital where Ross had to have a routine CT scan before making an appointment with the neurosurgeon at UC. Even with valium, he was unable to lie still long. The technicians knew him and were very kind. However, when our doctor talked to the neurosurgeon about the infected scalp, the neurosurgeon wanted Ross to have another CT scan with dye to see if his brain showed signs of an infection. On the way home, we stopped and purchased pizza which made Ross’s heart sing. He often spontaneously asks for pizza so it was a great reward for trying to be still. Ross started two antibiotics that night.
The next day we were back at the hospital and Ross was bravely trying to be still and I was giving him baby spoons of applesauce as a distraction while first the technician and then a nurse tried to inject the dye. Each tried twice without success, not because Ross was moving, but because the dye wouldn’t go in. We all agreed that it would have to be done under sedation. The UCSF doctor said he wanted to see Ross first thing this week. Of course, Monday was a holiday and nothing could happen. So yesterday, Tuesday, I sat by the phone waiting to be told when to be at UC with Ross. Finally, at 11:30 A.M, I received the call for an appointment at 4:30. I really thought they were going to do several tests while we were there. The doctor who saw Ross in the clinic (not the doctor who is to be his neurosurgeon) looked at the scan from Friday and looked at Ross’s head and said, “I think he is fine.” What welcome news! For whatever reason, starting yesterday, after being on antibiotics for three days, Ross was much brighter, talkative and playful. He even joked around with Jeremiah and me while Jeremiah gave him a haircut in the morning. We got home around eight and Ross slept well through the night.
Ross has said something interesting things this week. On Saturday, he said, “Where is Japan?” Then he spelled Japan. “I want to go to Japan this summer. I am Japan I am going to Japan!” There is always something new and delightful.

January 12, 2008--Betsy wrote and said the following update was written in stages:
January 8: Happy New Year to everyone! Ross has had ups and downs over the last two weeks. For a few days before Christmas, he was confused, very demanding and obsessed with food. On Sunday afternoon he had a grand mal seizure. On Monday, he was less confused, but a little delayed in chewing and talking. On Christmas Day, we had a late dinner because guests were coming. We set Ross up to eat a pre dinner in his room (his regular dinner time is at 6 PM). He sat on the edge of his bed, not easy with an air mattress, with his plate on the adjustable hospital table and fed himself. It was beautiful to watch. By the time we had dinner, close to eight, he ate with us, but without the frenzied demands of Thanksgiving. In fact, he was very calm and enjoyed the company. I did notice that he kept telling people, “My name is Ross.” He frequently reminds me of the happy little boy of yesteryear who reached out to all our friends with enthusiasm and charm.
The following Sunday (the Sunday before New Years), Ross again had a grand mal seizure that was six minutes long. Three hours later, he was feverish and definitely sick with an intestinal virus. We were really worried for a couple of days about him being dehydrated. I gave him rice water, rice, homemade applesauce and a small amount of chicken broth for four days, giving him only a small amount of food every hour during the day. We all were much happier when Ross was back to normal.
January 12: As I was waking up this morning, I realized that I haven’t written an update because not only have I been incredibly busy, but also because Rusty and I are concerned about how Ross is doing. We sometimes have trouble remembering that the cycle of life involves slow times, plateaus, struggles and accomplishment. So, even though Ross’s is improving and one day he continually moved his left foot on his own as he walked, we worry. Another day, he walked from the therapy room, up the ramp into the house and down the hall to the living room with the therapist on one side and Jeremiah on the other. He also is using his left side more in crawling. But, he wasn’t talking as much, he was scared, angry, and frequently telling us to leave his room. (Of course telling us to leave is something he couldn’t have done a year ago.) The question of why he has been having more seizures is still on the table. In addition, Ross has had crusty sores along the incision line where the doctors removed and then replaced part of his skull five and a half years ago. The problem started several months ago and I have tried alcohol, biotin shampoo, antibacterial ointment and it didn’t heal; in fact, it spread. Finally, I tried Desitin, the zinc laden diaper ointment. His scalp is better, but not healed. I was talking to the speech therapist about it last week and she referred us to a neurologist who does bio-medical testing. We have an appointment on Monday. In the meantime, Rusty and I are wondering if instead of the cause being organic material left during surgery working its way out, Ross has an infection. The good new is that we expect this doctor will be able to give a diagnosis. We also have to find a new neurosurgeon to monitor the shunt in Ross’s head that maintains the correct water pressure. The old surgeon moved away and Ross has been referred to the University of California at San Francisco. While this means more hassle, it is probably good because we will soon need to arrange for a cognitive program and it may be that we can work with someone there.
Today, Ross is much happier. He proudly walked across the room four times with support of me and the caregiver. Our job was simply to help him balance while he shifted his weight from one to the other and moved the other foot. He was very pleased with himself. We then played a game of kickball. At lunch, he talked about only having half his food and asked me for the other half. He than said, “Two halves are equal to one.” After lunch he drove outside in his chair for a while and said to Rusty, “I am so relaxed!” several times. Onward and upward!

December 20, 2007--a long overdue note from Betsy, but understandable, considering the schedule she keeps with Ross's care!
Once again, two weeks have gone by without an update. We have been busier than usual. Ross is making strides forward, but for the last week and a half I was worrying because he was so quiet and often angry and frightened. As usual, I was worried that something was wrong or that he had reached a plateau even though we have been through periods like this which appear to be a rest before the next consolidation. His frequent small seizures have diminished and it may be because Ross’s neurologist resumed the original dose of Tegretol Ross was on until a couple of months ago.
About a week ago, Ross woke at 5 AM for his medicine and said, “Pink, pink, pink. P I N K. Blue. B L U E. Red, R E D. Yelow. Y E L L O W. A few days later, his older sister Liz arrived from North Carolina for a visit. At first Ross seemed to not know who she was. Then, he was shy and wouldn’t look at her. The next morning, he said, “I love you Liz!” which made her day. He still continued to be very quiet and to ask Rusty and me to leave his room when we went in, not just once but almost every time for a few days. On Tuesday, he was confused and even disinterested in eating gummies He stood up in therapy to stand next to Liz, but was definitely less interested in working. That night, we were watching a Hallmark channel Christmas movie, and he asked to sit in one of the easy chairs. We transferred him and then he sat happily singing letters of the alphabet at random. He was so happy to be sitting in a normal chair!
Then yesterday, in therapy, while he was lying on his back and the therapist was putting him through range of motion and stretches, he pushed hard with his left leg when she bent it at the knee. He did this six times, which was a first for him. When he was transferred to the walking frame he walked about fifteen feet without sitting in the sling or slumping against the chest support. Today, with Jeremiah he walked from his bed to his recliner in the living room, over 50 feet. He was so happy to be sitting in the recliner and I sat next to him while I did some mending. When it was lunch time, we put him on a dining room chair and he ate lunch at the table. Then back to his recliner. My spirits soar when we have these moments of normalcy. After lunch he was agitating for more food and he said, “Food, F O O D.”
Well, it is time to go to the chiropractor. Ross is always full of surprises there. My New Year’s resolution will be to be more regular in the updates.

December 1, 2007--received a note and photos from Betsy this morning:



There is an article in the Press Democrat today about cycling in Sonoma County and the Bicycling magazine article.
At 6 AM this morning, Ross said with a smile, “I am so excited!” Well, Rusty and I are also excited because we see so many wonderful changes in Ross.
Ross is now walking with minimal support from Jeremiah. The therapist told us yesterday that Ross is ready to start using the parallel bars because he is finally weight bearing with both arms. In therapy, he crawled, scooted, supported himself on both left and right arms, regularly pulled his left arm from under his chest when he was lying on his stomach, and rolled from back to front and front to back over and over. The day before, he reached down with his left hand to get the gummy bear stuck to his left leg and using the left hand put the candy in his mouth twice. His left side is beginning to work.
In the midst of the physical movement progress, Ross is expanding cognitively. People who knew the old Ross will recognize his current humor. I was sitting with Ross when he looked at me and said, “You’re ugly! I hate you and I’m going to eat you.” Then he immediately laughed and smiled. As always, when the therapy is hard, we hear a barrage of bargaining. “The human body can not roll!” “It’s your problem!” Or to Jeremiah, “I am a king, you are a king, give me food.” Increasingly, when he is hungry, Ross tells me how much he loves me and then he says, “Give me food!” He is progressing through the developmental steps of childhood with the vocabulary of a man. Another time, he asked me, “Do you hate me?” I answered that I didn’t hate, that I love him. He said, “You love me? Yahoo, my mother loves me.”
We are still trying to control the seizures. They have slowed down, but Ross is still having them. We are all coming to the conclusion that, for Ross, they are little corrections or happen when there is a sudden power surge and we are learning to anticipate the stronger ones. Ross is making great progress because he is minimally sedated, but that means he also will have these “power surges” occasionally. Please pray with us that he continues to progress and has no setbacks from these little seizures.
We are going to buy our Christmas tree today and we are taking Ross with us. I am hoping that he will be able to help with the decorations this year.

November 23, 2007--Betsy just sent a "post Thanksgiving" update:
I hope yesterday was fun and rewarding. We had a good time and I can’t believe we used to do those large Thanksgiving dinners. Ross had a grand mal seizure on Tuesday night and when he woke up he was awake from very early Wednesday morning until about ten last night. All Wednesday night, he was singing “Kaboom, kaboom” and flying airplanes. He was yelling,”Commando, commando!” “I’m okay, I’m okay!” “Don’t shoot!” This literally went on all night long.
Thursday, he was still animated and singing “Kaboom, kaboom”. He was enjoying all of us... He told our dear friend Gerri, “I am the King.” Gerri said, “Hello King! Who am I?” Ross said, “You are the queen.”
Before dinner, everyone was talking and Ross was sitting by himself. I heard Ross say, “Everybody listen! My name is Ross Dillon.” He was fairly patient as we sat at the table with the food in front of us while Rusty read a long poem and Washington’s Thanksgiving Proclamation. Finally, we could eat and that tired man (Ross) who had not slept for a day and a half was stuffing overly big spoonfuls of turkey, vegetables, and stuffing into his mouth. I tried to get him to slow down, but he was in his element. I let him finish two platefuls of food. After feeding him a piece of pie (because I could control the size of the spoonfuls and the speed with which he ate), the caregiver and I got him to bed. He had terrific hiccups so I put an ice pack on his chest (I had read about this) and after about twenty minutes, his hiccups stopped. An hour later, he was still moving his right hand around in the air like an airplane gliding and turning. He and Jeremiah have been reading and looking at a picture book of old war planes that Ross loved when he was about ten. When he was in fifth and sixth grade, he would spend hours drawing planes. Maybe this renewed interest, combined with the active fantasy life of young children (in many ways Ross is a young child), explains his nocturnal movie.
The long awaited article in Bicycling Magazine is in the Jan/Feb issue and will be on the stands December 4. The author, David Darlington, did an excellent job of researching and writing the story of how the lives of Ross and other cyclists have been shattered by crashes caused by inattentive or impaired drivers hitting them when they were just riding along and obeying the rules of the road.
Onward and upward! Thank you all for your support.

November 20, 2007--Just got an update from Betsy:
Ross’s seizures have subsided somewhat. He had a couple of partial seizures on November 10. These seemed to result in him being less clear in talking, more mumbling, and less speech. In the previous week he had started telling stories and taking different parts and using a different voice for each part. He thought it all was hilarious. One night the story was a long and involved story about him and me. He said something about “Betsy, and she has two great kids.” As Rusty wrote in our log book, “It was very entertaining to Ross and he laughed uproariously.” During that week, prior to November 10, he made some giant steps in therapy. We rigged up his old skate board with a big pillow and put him on it. He crawled back and forth across the room on the skateboard moving his right leg and both arms to get from one end of the room to the other. Also, during this week, when he was walking four laps with the therapist and caregiver, during the final lap he lifted his left foot up and forward without help on each left step. This was a first. He is really beginning to understand and execute the weight shift from one leg to the other.
After those two seizures, he was more frightened in general and reluctant to do things he had being doing, like leaning to his left side to reach for a gummy bear, leaning forward to grab the gummy, or to stand up. The therapist commented on this and said that while he is less adventurous, she is less worried about him trying to stand on his own and falling. I agree that this is a positive aspect.
He had another partial seizure lasting four minutes on Sunday and after sleeping through the night, he woke up in a better mood and had a terrific therapy session yesterday. He has been working on scooting from side to side while seated on the therapy mat, and he scooted the whole length yesterday. We also saw the consolidation of a number of skills he had been working on as he lay back on the mat with his feet on the floor. He rolled to his side to grab a gummy bear, of course. He was so close to sitting up, pushing his upper torso with the left arm on which he was resting and using the right hand and arm to push up. The therapist was talking about Ross getting back normal movement (I’ll accept that). After that, Ross, with the therapist and caregiver at each side, walked 32 feet across the room, across the garage, up the ramp and to the chair I had placed in the utility room. After a short rest, about five minutes, he walked back for a total of 64 feet. He was very pleased with himself and, as he does at those times, he lifted first one shoulder and then the other, grinned and gave a thumbs up with his right hand.
I have continued to play the computer game Snood with him. Last week, he actually moved the mouse around and watched the movement of the aimer on the monitor. I worked the trigger because that extra movement was too much. He was very pleased when we won the game. I played with him last night and he only wanted to give me instructions about how to play, mainly in the form of yelling, “No, play up, play up!”
He has been saying, “My name is Ross J Dillon” or “My name is Ross, R O S S. In the last couple of weeks, he has been saying, “My name is R O S S D I L L M A M ” or something similar and also writing it. This morning the television happened to be on a PBS station and he loved the cartoon characters and the teaching about reading. The word was drink and they showed it as dr ink(word said) = drink(word said). Ross said “d r i n k”.
More and more, I see the wisdom to things I have been told over the last five years. 1) Everything is hardwired in the brain and he has to access it. 2) The key concept in brain injury rehab is an environment that is stimulating and the patient interacts with it. 3) Coming back from a brain injury, the redevelopment is similar to the original development of babies. This is hard work for Ross and us, but it is an exciting journey. Thank you for your prayers, love and help. Happy Thanksgiving!

October 30, 2007--a really great update from Betsy:
I am finally beginning to feel better. Ross and I both have had a cold again (or maybe it was the same one) and all my usual remedies have not shortened it for either of us. We have both been tired and conjested. I started writing the update on Saturday night as we were gathered around the television, watching the World Series. Since Ross lived in Boston, you can guess who we wanted to win. Ross was so involved with the game. Here is a sample of his monologue: “Be a man; swing it.” “Watch; watch, he’s going to kill the ball.” “Be careful of my right arm. He was swinging his right arm whenever the ball was thrown to Boston. “He killed the ball. Kill the ball.” Rusty and were enjoying the game, but even more we enjoyed Ross.
Earlier on Saturday, we laid out Uno cards, two rows, each containing a red, yellow, blue and green card. We wanted to see if Ross could match the colors. He not only matched the colors, but started picking up each card and putting it with its mate. He said, “This is easy.” He played another hand before shoving the cards away. Later, the caregiver put some cards out and Ross placed them in descending numerical order. On Monday, I told Jeremiah about using the Uno cards. When he put some cards out, Ross put them in ascending numerical order. Also, on two separate occasions in the last few days, we have heard count from 1-11.
Other examples of Ross’s new command of language, but also examples of more self awareness and growth: Ross was in bed and I was talking to him. He said, “Am I in my own room?” I answered, “Yes.” Ross said, “Yahoo, I am in my own room in my own house.” In fact, Ross asks many times, “Am in my own home?” He was out at the street with the caregiver, and a group of motorcycles came down the road. Ross said, “Bicycles!” This is the first time he has said the word bicycle.
We got out Ross’s guitar and put it in his lap. He is now strumming the strings with somewhat of a melody and singing, “My name is Ross, Ross Dillon”. He told Harold when Harold was playing his own guitar, “I have one or those and a piano.”
When Ross is frightened or mad, both frequent occurrences with a brain injury, he will start yelling and flailing. Rusty and I are telling him that it is not okay to hit. Anyway, Ross hit Rusty, more an accident than intent. Rusty gently told him not to hit. Ross said, “I’m sorry.” A couple of days later, I had a similar experience. I said, “Ross, you hurt me.” He looked at me and sweetly said, “Mother, I won’t hurt you again.”
We were on the way home from the chiropractor and Ross’s left foot and leg started to hurt. As soon as I could park, I took the orthotic off. Ross said, “Get it off! It hurts. Throw it out (the window). It is evil, e-v-i-l-e-d, evil, evil.” When I got it off, he said, “Thank you!”
Yesterday, we had another first. We were coming home from having the orthotic adjusted, and he reached out his hand to me, but not in the usual way. He then started to talk to me. I looked at him and his hand was shaking and then his eyes started to rapidly blink; he was having a partial seizure. We always carry the sedative when we are out, so we gave him some and continued on home after it ended. But this was the first time that he has tried to let me know that a seizure was happening. But, in fact, he had been telling me on the way to the appointment that he was terrified of being hurt while we were traveling. Even though I was driving as slow as possible, he was yelling that it was dangerous. It was nerve wracking because he was so upset, but I realized later that once again, a seizure was preceded by acute fear earlier in the day.
Just a couple of humorous stories; our dog, Jo, barks a lot – she barks because she’s happy, curious, wants more attention, guarding the family, whatever. Ross and Harold were playing with her. Ross said to the dog, “We have ears. You are a dog with no ears.” This afternoon, we had just loaded Ross and all the paraphernalia in the van, and Ross put his new hat (a birthday gift) on his head. He asked, “Am I a cowboy?” I pulled the visor down so he could see himself in the mirror; he adjusted the hat brim and said, “Yahoo, I am a cowboy.” And we drove off into the sunset.

October 20, 2007--Got a long update from Betsy:
A photographer from Rodale Press came to photograph Ross for an upcoming piece in Bicycling Magazine (probably the December issue) on car versus bicycle incidents in Sonoma County. The writer spent a lot of time researching the story and I am looking forward to reading it.
Now for Ross: He is delighting us with his communication and his increasing mental clarity. He is still having seizures, although they have all been partial, small ones for the last two weeks. On Sunday, he had three in one day. He was confused and frightened the next day, but then he was fine until yesterday morning when he woke up at 3 A.M. and then had a seizure around 11 A.M. Today, he has had two seizures, one at 11 and another at 3:30 P.M. Rusty and I want so much to understand why this is happening. The seizures seem to be connected with improvement (as if a new circuit is coming on line). It could also be that the new antiseizure medication is not yet at therapeutic levels; however, the old medicine is still at a therapeutic dose. I was talking to the chiropractic neurologist about it and he encouraged me to trust my instincts because Ross is an individual and at this point I know him best. A nice vote of confidence, but I want to feel more confident.
One more thing about the seizures-when Ross is having one, the left side of his face goes slack, the left side of his mouth falls at least an inch. The interesting thing is that Ross has started lifting his left foot a foot or two in the air and he is now consistently using his left hand to do things, something it has taken five years to do. Also, Ross is now holding his own glass and drinking all the fluid on occasion.
Telling you what Ross has said is always fun. The other day he looked out the window at the sunset. He said, “The sky is beautiful. I see the mountain behind it and the hills.” Another time, he had been outside driving his chair around the driveway. When he came through the door, he called, “I am home.” Twice, when I showed him some blue stars, he said, “I love the color blue.” He also said one evening, “That’s the best music ever.” Recently, Ross, the caregiver and I were sitting together. Ross said, “There are two men and one woman in this room.”
Last week, Harold, one of the caregivers, was singing songs for Ross. He was singing the song, “You’ve got a friend”. When he got to the line, “Just call my name”, Ross started singing, “My name is Ross, R O S S.” The singing went on for a while. Another time, Harold put his guitar on Ross’s lap. Ross started strumming and singing loudly. A few days ago, we were driving past a McDonalds. Ross excitedly pointed at the big M sign outside and said, “M”. He repeated it the next day when we drove by. Later, as we approached a stop sign, Ross yelled, “Stop, stop.” I told him to let me know when we reached another stop sign and he did. However, the next two stops signs didn’t interest him at all.
He has also been doing something new with Jeremiah. Ross puts his hands together (another therapeutically big event because he is working bilaterally) and then he says, “1, 2, 3, 4, 5, up, up up” as he lifts both hands together. It is a way of Ross asking to be pulled up in bed.
Two noteworthy things happened this afternoon as the caregiver was trying to get Ross ready for the shower. Ross was feeling vulnerable and scared and so he was yelling and resisting. “Don’t hurt me. I am still the President of America,” he said. Then he became really angry and started flailing. Suddenly he stopped, his face relaxed, and he said, “Why did I do that?” He said something similar last week after an outburst. Rusty and I have talked a lot about this. We know anger and combativeness are typical for recovering traumatic brain injury patients. We also know that sudden movements by others inside Ross’s personal-visual “space” (PVS) frighten him and elicit abject fear. It also appears that feelings just well up from within him at times. Of course, if it is smiles and laughter we aren’t concerned, but we do worry about intense anger (Ross sometimes says, “I’m feeling violent.”) Ross is now recognizing that these outbursts seem to come from “nowhere”. As I write this, I realize we can rejoice in his increased self awareness that is allowing him to feel something does not make sense, and to say, “Why did I do that?”
One last thing; today is I saw Ross bring his left knee up and his left foot flat on the bed, and then bridge three times, lifting his buttocks off the bed. This was a first. We are blessed.

October 16, 2007--I just received a very brief note from Betsy:
I am checking in to let you know Ross is okay. We have had a busy week. Ross has been making cognitive gains, but he is once again having seizures, all partial seizures with the exception of one grand mal. He has been very confused, tired and grumpy after three partial seizures yesterday. I am still not feeling well and trying to follow my own advice and rest. So…more tomorrow.

October 6, 2007--An update from Betsy about Ross's dentist appointment:
Ross had his teeth cleaned yesterday which requires sedation. The appointment was at 7 A.M., which was good because he can’t have food or water for eight hours before. He was scared and told us just what he though of the process until the surgeon and his staff got the mask over his nose, then the injection, and Ross did well while the hygienist cleaned his teeth and our dentist checked his teeth. The next appointment will require more work; he has a couple of teeth that need composites. Ross always took beautiful care of his teeth, but post injury, we can’t get into all areas of his mouth for brushing because he fights it. We were out by 8:15 A.M. and as Ross wanted to “go home, eat food, sleep”, we did.
The rest of the day was uneventful and Ross seemed tired, but with sedation that is to be expected. We still have to restrict his fluids because of the Tegretol medication. Last night around eleven, he woke up with a fever, but cold hands and feet. I worked with him, trying to make him comfortable. We gave him Advil to bring down the fever (fevers over 100 cause him to seize). I recognized a partial seizure starting and decided to give him a sedative to forestall a grand mal. I think I made the right decision, because his right hand started to shake, but then he calmed down. At that point his temperature was equivalent to 101.5 orally and we were using cool cloths to cool him off. He seemed better and I lay down, leaving the caregiver with him. An hour later (1.00 A.M.), his fever was up to over 103, hands and feet still cold. Thanks to Google, I found these were symptoms of dehydration and I gave him 250 ml of a homemade electrolyte solution. Within a half hour, his temperature was coming down, his hands and feet warmer, and I had him sipping juice and crushed ice. He slept well and this morning his temperature was around 99. His chest has been clear throughout this trial, and that is a great relief.
He has napped off and on today, and his temperature is up, but under a hundred. In the old days, I saw fevers as a positive way for the body to fight off illness. However, I no longer let Ross’s fever go above 99 axillary (equivalent to 100 orally) without giving him something to bring down the fever because of the danger of seizures.
While Ross is less talkative today, he is so much brighter than he was two months ago. He is definitely enjoying his food and more of the smoothie today. More than usual, I feel we are walking a tight rope keeping Ross healthy and progressing. Tomorrow is another day, onward and upward. We are carried on the wings of prayer and love.

October 3, 2007--Received a note from Betsy. I apologize for the delay in posting. We were away and the hotel Internet didn't work.
I am sorry for the long silence. Our whole family had a bad cold with bronchitis and I also have been dealing with kidney stones. Thankfully, I have been able to sleep a lot (a great healer). Ross is doing well with the new antiseizure medication, Lamictal. However, as is sometimes the case when he has a good day and is very excited, he hardly slept on Saturday night. On Sunday afternoon, after a sweet day of increased communication and telling me, “I am addicted to your kisses”, Ross had a grand mal seizure. He bounced back pretty quickly and slept well on Sunday night. Monday night was a different story; he did not sleep at all from 8 AM on Monday morning until 1 AM today. He was delightful company, not grumpy, and full of energy. In fact, he has been even more alert and aware and his observable thought processes are amazing.
One day, he said, “I am so scared! I am terrified! Don’t hurt me! Then he said, “Do you want to keep me alive? The caregiver said, “Yes”. Ross then said, “You have to say, ‘I want to keep you alive.”’ He made the caregiver say those exact words twice for him. I believe that this is an indication that on some primitive level, Ross was aware of what was happening during the year when he was hospitalized and the seven surgeries that he endured. It makes me cry to think about what he endured, just in having his life saved.
Later, we were watching a Jetta commercial on TV. A line of Jettas was going along a curvy mountainous road and Ross was laughing and he said, “Like a train.”
Another day, he said, “I need to sleep. My words are in my head and I can’t talk.”
Another time, he said,” Give me a hug!” I hugged him and he said,” This is the best encounter, “Hug me again.”
I went in to his room the other day, and he was repeatedly raising his right arm up, then out, then back and he was saying, over and over, “Up, down, back!”
Yesterday, Jeremiah was drinking coffee and Ross asked for some. Jeremiah said, “I can’t give it to you because it has milk and you are allergic to milk.” Ross said, “Who said?” Jeremiah said, “Your mom!” and Ross accepted it. Earlier, Jeremiah tried to remove Ross shoes when he was in bed. Ross was fighting it. Jeremiah explained that he wanted to take them off so Ross could relax, and amazingly Ross stopped fighting. This new cooperation and reasonableness is a blessing and truly a sign of progress.
One last story before I end for now. Yesterday, Ross was pointing to a picture in his room that I took of him, Ariel and Rusty when Ross was about nine years old. Jeremiah didn’t understand what Ross wanted, so Ross said, “Picture!” When Jeremiah brought it over, Ross pointed to his picture and said, “Me.” Then he pointed to Ariel and said, “My sister,” and then “My father!” when he put his finger on Rusty’s picture. I am reminded of all those pictures we showed him over the last five years, trying to determine if he remembered the people, and now he can do it. Life is good. Thank you to everyone.

September 18, 2007--Just got a note from Betsy:
The beat goes on. Ross is doing much better; no grand mal seizures and only a few partial ones. We have been so busy with day to day life. Ross has seven therapy sessions a week and all the work that caregivers supervise, including daily cycling for an hour. Ross’s cognitive abilities and speech are breath taking. With increased alertness, he is more afraid of being hurt. He tells us many times a day, “Don’t hurt me!” I was talking to the speech therapist about it and she said that this is consistent with her experience with stroke patients. Ross is now aware that he could fall or that we could drop him. Over the weekend, he didn’t want to stand. He kept saying, “Do you promise (that you won’t hurt me)?” Yesterday, when we wanted him to stand and he was frightened, he said repeatedly “Are you sure?” One of the surprising things for me is that he will have days of saying, “My name is Ross Dillon!” Then, he will ask, “What is my name?” Yet another example of the adage that recovery from brain injury is not linear.
His love of food and hearty appetite continue and some of his funniest moments are around food. He told me tonight, “I haven’t had a bite to eat for the last eighteen years.” He has also had trouble sleeping through the night. The other night when the rest of us were trying to sleep, he repeatedly said, “My father is Mr. Dillon. My mother is Mrs. Dillon.”
Ross is walking longer distances with Jeremiah or the PT supporting him. He now takes a big step with his right foot. He has been arching backward as he stands which puts a strain on his back and he actually says, “That hurts my back.” Yesterday, I spent some time working on his back with the Tennant biomodulator that we bought last year. I observed two interesting things. 1) Last year, when I would assess the energy voltage almost anywhere on his body, the reading would be below normal. Yesterday, all of the spots on the right side were in the normal range, but the left side was below normal. However, after treating his back, the readings were better. He was definitely in a better mood after we finished and he slept straight through the night. I also worked on his left arm, which is still lagging behind his abilities with the right arm and hand. Again, the readings were below normal before I started.
Thank you so much to all of you who help make this possible. We could not do it without you. Also thank you to everybody who sent birthday wishes to Ross. We read all of them to him.

September 7, 2002--I just received this from Betsy:
Today is Ross’s 31st birthday. He is in a wonderful mood with lots of laughing and talking. Yesterday and today, he has been saying, My name is Ross, R..O..S..S.” Or “My name is Ross Dillon.” He also just said, “Everybody in this room tell me your name immediately.”
This is especially thrilling for us, because the last two weeks have been a roller coaster ride. Ross has had three grand mal seizures in less than three weeks and numerous partial seizures, plus an absence seizure that lasted about fifteen minutes. I still believe, even though we followed the doctor’s directions, that we tapered off the Keppra too fast and that these seizures are related to his brain’s adjustment. (I just remembered that we tried to get him off another drug many times with unfortunate withdrawal effects before we found a very slow protocol that worked.) Keppra is a fairly new drug (less than ten years old) and not enough is yet known about it. For example, Ross is the first patient his doctor has taken off of Keppra. The neurologist has started Ross on a new antiseizure med that could, in the future, replace all his antiseizure medications. In the meantime, though we are tapering off Lyrica which was to replace the Keppra but has side effects affecting vision, adding in the new anti-seizure med slowly and praying for Ross’s safety. After starting the new regimen, Ross had a week of no seizures, though he was tired and had less focus during therapy.
On Sunday in the cool of the evening, we took him to the regional park and he drove his wheel chair for about half a mile before becoming too tired to continue.
On Tuesday morning, we went back to see the Neuro Optometric Rehabilitation specialist. He hadn’t seen Ross for two years and he was delighted to see how well Ross is doing. He was especially impressed with the self portrait Ross drew last spring. He changed Ross’s glasses by replacing the tape at the inside corners to a single round piece of tape about a third in from the corner on the left lenses. He determined that Ross sees with both eyes, but is right eye dominant and Ross’s peripheral vision is good. Ross was in high spirits and announced, “I want everybody in the world to know that I have always been hungry, I am hungry and I want food now!”
The next morning, Wednesday, he didn’t feel well and when I asked if he felt sick, he nodded affirmatively. Around 1:30 P.M., he had a partial seizure and then we kept him resting all afternoon. Before dinner, Rusty worked with him on the augmentative keyboard and Ross typed his name as well as a series of Rs. Then he typed a series of Ss. Ross said, “A bunch of Ss.” Around 6:00 P.M., he took one bite of his dinner, turned to the right and did not move or speak for about fifteen minutes. When he laughed and said, “I love my mother!” I breathed a sigh of relief, but minutes later he started to blink his eyes. We got the sedative in his feeding tube, but the grand mal seizure lasted for four minutes. We got him in to bed when it was over. He fell asleep and slept for ten hours. The next morning he was grumpy and kept saying, “Don’t hurt me!” He acknowledged that his head hurt, so we gave him Advil. Later, when we talked to him, it seemed that he might have been aware of his body thrashing and that it hurt. This is obviously something we will explore with him later. He also said that morning, “I don’t want to be dead!” By afternoon, Ross was animated and laughing and telling us, “My name is Ross”. He was awake until 3 AM this morning and continues to be happy and talking a lot.
You know how you hear a statement and think you understand. For example, “Recovery from brain injury is three steps forward, one step back.” I have decided as wonderful as it is to have people tell you their experience, we never really understand until we have gone through it ourselves. I do draw strength from the advice I have gotten, because I think it means that no matter how scary and fraught with peril, most people do improve. Please pray for Ross.

August 24, 2007--Note from Betsy:
On Sunday, Ross’s friend Jon and his family, Mel and baby Ella, came to visit. Ross definitely remembers them. The first thing he said to Mel was “I want to marry you.” In Ross language, that means she is beautiful. He watched Ella with delight and at one point, he said, “She is powerful!” It was wonderful to see them with Ross and I am so grateful to Jon and Mel for visiting when they are in California. It really means a lot to Ross and to us.
Ross frequently is telling us, “My name is Ross.” Until recently, he most often said, “What is my name?” When he was having his massage yesterday, he talked constantly. He told the massage therapist, “I want a picture of you and me dancing.” He also said, “I love my family, we are the smartest people of American History.” A little hyperbole, but I did put an emphasis on American History with my children and we took several wonderful trips to important American history sites. Apparently Ross also asked first thing in the morning, “What time is it?” One day, I was telling him that Liz, his older sister now owns coffee shops in North Carolina. He looked quizzical and said, “Really!”
This morning, as he awakened, he said to me, “Everything I do has to be perfect!” A couple of hours later, he had a big break through. Over the months, we have seen him somehow move his left foot, but it seems an exception rather than the rule. Today, in therapy, we put his left foot on his skate board (Ross was sitting on the therapy table), put cones in front of the skate board and asked him to knock over the cones with it. He not only was able to do it, but he did it several times. He really had to think about the process and work hard to accomplish it, and it was truly awesome.
We are so grateful for Ross’s progress and also that his good humor has returned. Thank you all for your prayers and support. Onward and upward!

August 19, 2007--Got a long note from Betsy:
Ross is still progressing and delighting us with increased communication. Both he and I have been under the weather and he is continuing to have seizures, most are small partial ones, but he had another grand mal on the 14th of August. His sleep schedule is different for the last five days; he is getting between four hours and seven hours of sleep in a twenty-four hour period. This is in contrast to twelve hours per night previously. He is tired during the day, then will perk up and be alert and full of fun. He spends more time with his head down now, something that I have interpreted as sadness. This could be a sign of sadness, anger, depression. As I write this, I realize that there is constant brain reorganization going on and this may be another one of those regressions before a break through.
We put the pole up next to the therapy table, and Ross has been learning to pull himself up by grabbing the pole and walking around the pole, while holding on to it. This, of course, requires maximum assistance from the therapist and Jeremiah with me providing the gummy bear incentive to move in the direction needed. The left side, including his left foot, needs lots of help from us. He has done this in three or four sessions, but on Friday he was too tired to do more than sit and stand holding on to the pole, but he probably did it ten times. He is continuing to become better at kicking the ball with his right foot and has started kicking it twice, up the first time for a set up and then kicking it away. He is also continuing to do standing transfers with the men and the therapists.
As usual, language is very rewarding and as Ross can express himself more, we will be able to dialogue. He frequently says, “I can’t do it. I am broken.” This always elicits reassurance and pep talks from me. Recently, I told him, “You have a brain injury that happened when a woman wasn’t paying attention and hit you with her car while you were riding your bike. She didn’t mean to.” Ross said, “I am so angry!” That was the first time he had been able to articulate his anger about his predicament.
The other day, while Ariel was cooking in the kitchen, Ross said to me, “I love my sister a lot, but I love you more.” The clincher was the second sentence, “I love you. I want to live with you all my life and eat food.” As long as I provide food, he has a soft spot for me. I joke as I say this; it is true that I am associated with food, but I know he does love me. He loves all of us and tells us frequently.
A week ago, when one of the caregivers was taking care of him, instead of fighting it, Ross started laughing and saying, “Please, be afraid of me!” Apparently, Ross made wolf barking sounds, and when the caregiver dropped something on the floor, Ross said, “You are scared, you are scared! You are supposed to be scared of me.” He then laughed.
One day when Rusty and Ross were playing with the dog, Ross said, “She (the dog) is doing a good job.” Last night, he asked, “Are you tired of me?”
It is nearly 10 AM and Ross is just waking up. He has had about eight hours sleep. I hope he goes to sleep again, because he isn’t likely to take a nap.
Thank you for your prayers and good wishes.

I talked to Betsy after she sent her update, and she wanted me to add that she walked into Ross's room and heard him counting: "1...2...3...4...5." He repeated the sequence a few times and she said she commented that he was counting. Harold, his caretaker, said, "Oh. I forgot to tell you. Ross has been counting..." More good news!

August 4, 2007--Betsy must be picking up my "vibes!" I was just getting ready to call her for an update when the following message arrived:
Adjusting Ross’s medications has been the big issue this week. The doctor upped the dose of the new antiseizure add-on medication, Lyrica, after the day of five seizures. Ross definitely seems to be a little dizzy and uncomfortable, which are side effects of the drug. Some days he is happy, other days, like yesterday he is tired and grumpy.
We had guests last weekend and Ross was very animated, especially when I didn’t produce food fast enough. He was trying to get my attention; I was in the middle of answering a complicated question. He tried a number of ways verbally to get my attention: “Give me food!” “Betsy!” Finally, I heard “Honey!” When I went back to talking, he said, “You are horrible!” As he was talking, he was crossing his arms bilaterally, another new and significant movement.
On Wednesday, we played kick ball in the driveway. There were three of us in an arc in front of him. He would alternately kick the ball to one of us. His eye-foot coordination on the right is incredibly good.
It has been a hard week for me; I am once again grieving about how much Ross’s life was changed in an instant. It is easier to focus on the positives when the sun is shining in our lives. I confess that when Ross is having a hard time, I have a hard time also. Today is a new day and I pray that there will be joy and new breakthroughs for Ross today.

July 25, 2007--a brief note from Betsy:
This has been a harder day. Ross had five small seizures today. After consulting with two neurologists, I think it is probably withdrawal from the Keppra. Today’s seizures may be because we have been tapering another medication for the last nineteen months, and the latest reduction upset the applecart. Ross is fine now (we gave him a sedative) and when Rusty just went into see him, he remarked that one would never know he had had a rough day. We saw Ross’s neurologist today and he was impressed that Ross was much more present and making eye contact.
Those of you who have written me and are waiting for a reply, I have not forgotten. The last month has had too many days with too few hours. I will write. God bless all of you who care for us.
Betsy

July 24, 2007--Received a note from Betsy with an amazing update:
Sorry I haven’t sent this sooner. The last couple of weeks have been pretty intense.
So much has happened since my last update. Ross is now with us on a new level. He is continuing to walk with a lot of support, lots of cueing about shifting weight and, on his own, turning his right foot in order to sit down in his chair. We have seen him move his left foot on his own a couple of times. One day last week, he walked a total of about 24 feet, from the plinth (therapy table) to his chair, back to the plinth, and then a final trek to the chair. This was different than before. He was standing in the walker without the seat or the chest strap to keep him from collapsing in the floor. I was a nervous wreck, but the therapist and Jeremiah made it work. And needless to say, Ross was working so hard. Also, we are now able to give Ross a shower. We have had a shower chair for two years, but he is just now able to sit safely without sliding out.
We had about 1 ½ weeks that were very hard. Ross had almost daily small seizures and on July 11, he had a grand mal seizure in the middle of a massage. As usual, there were no apparent residual effects. I think the seizures were byproducts of the transition from the Keppra to a replacement antiseizure medicine. While the transition has been hard, Ross’s new awareness and communication skills are wonderful.
Ross is very self aware and he is able to tell us how he feels physically and emotionally. For example, he told me a few days ago, “I don’t think they will ever let me work.” Today, he was frustrated as we tried to get him to do something that was hard and he said, “I can’t do anything but sit and eat.” Today was harder than usual because he hasn’t felt well and I suspect that some of the side effects of the new anti-seizure medicine may be bothering him.
I can also see how scared Ross becomes, sometimes over the slightest change, and as he yells I see a defenseless man who can do nothing for himself right now and has to trust that those of us who are taking care of him are not going to take advantage of him or mistreat him. This is a state that patients with frontal lobe brain injuries go through and I hope and pray that in a year we will look back and say “Isn’t it wonderful to be through that.” But Ross is also showing us his hope and that he knows he is getting better. Yesterday as Rusty and the caregiver were doing a transfer with Ross, Ross said, “God’s work is in this!” This afternoon, as he was having a hard time with therapy, he said, “Everybody in America is praying for me.” My friend, Debbie, was here and she said, “Yes, we are, Ross.”
There have also been some just fun times.
On July 17, we watched the Tour de France. When the camera focused on one rider, Ross said, “Who is he? I don’t know him.” He also said, “Oh my goodness!” a couple of times. On the 18th, Ross was lying on the caregiver’s bed in his room. He really likes to lie on that bed, probably because it represents normalcy. He started telling us a long story, much of which we could not understand. Ross laughed through the whole story: his story involved a cow and her calf coming into the house. Ross said, “moo, moo” over and over and then he snorted like a pig for a while. The story lasted for more than fifteen minutes and it was wonderful to see him so animated.
On another day, I was looking at a cook book as I sat beside Ross. He leaned completely forward to look at the page of pork recipes. I may have said something about pork, but Ross put his finger on the word pork in the title of each recipe and said, “Pork” each time. At another time, Ross told us, “I have a broken left back; a broken left foot. Give me food! Give me an apple. It will fix this instantly. Give me plenty of food and it will heal everything.” Later, I was trying to ask him a question and he said, “I don’t really care; I just want to go home.”
My final story is about the computer game Snood. Ross introduced me to Snood years ago and it is a great game. I have been playing it with him by my side; he gets very involved and gives lots of instructions. This afternoon I sat playing next to him and he said with delight, “This is the best game ever!” We have been trying to get him to move the mouse himself but the spasticity in his hands interferes. Tonight, I put his left hand on my hand as I held the mouse and played. It wasn’t long before I noticed Ross jerking our hands in order to move the mouse. We played five games with Ross controlling more and more. I am looking forward to him being able to play the game independently. It will be a wonderful experience for him.
I have been thinking about the ups and downs that brain injury patients go through. First of all, recovery is not linear. There are advances, then regressions. For Ross, the first two years had many regressions, and now Ross is consistently making progress, but gains bring more challenges. One of Ross’s challenges is that as he becomes more aware, he has to confront what has been lost and keep going. I am so thankful for Ross’s sunny disposition which shows through in the midst of his current struggles. Please keep Ross in your prayers. He has a difficult road ahead of him.

July 9, 2007--Just got a great update from Betsy:
Ross has been talking more and more interactive. On Saturday, he asked the caregiver, “Are you married?” several times. He also asked me,” Where did you find…..?” He may have been asking where I found a relaxation CD that a friend brought after it was suggested that relaxation exercises might help calm him when he is agitated. Ross thinks it is very funny and on the way to church yesterday, when I started doing my rendition, he laughed hilariously.
We have been playing kick ball with him for a while, but we started playing outside this weekend. It is a lot of fun and Ross’s coordination is very good. He has also been much calmer. However, this morning he was extremely agitated when we started therapy, but after we stuck it out, he had a beautiful session standing and sitting over and over. Also, he was standing for maybe five minutes at a time. We used the walker for him to hold on to, but he was not belted in. He did a great job, and it is another step toward independence. The therapist also pointed out that he did not drool at all today; usually we have a couple of wet hand towels by the end of the hour. Because of his agitation this morning and a sense that he isn’t feeling well, I made sure that we took it easy today. Indeed, he did have a couple of tiny absence seizures in the afternoon. He had a late nap and awakened hungry as usual. Because I was concerned about seizures and his subdued state, I puréed his dinner: chicken, beans and squash, very soft and extremely easy to swallow. We finished the antiseizure medicine that has been giving him trouble, Jeremiah is on vacation, and he may be fighting a virus-all things that could be responsible for him being more subdued and less talkative. Life goes on and we are so thankful for Ross’s continued progress and his love for his family.

July 4, 2007--I haven't heard from Betsy in so long, I was prepared to call her this afternoon. She must have picked up on my concern, as I just received a long message from her!
I haven’t updated in so long. Ross and I have been on a roller coaster ride. As I told you in the last post, Ross had become aggressive and combative. As I said then, there is increased frustration precipitated by increased awareness of his present limitations and perhaps reflection on what has been lost. Ross also is in the developmental stage of preadolescent/adolescent. It is easy to understand how this can lead to outbursts when he is pushed. I have been able to accept this in theory, but to have Ross lash out at me when I am just sitting next to him was shocking; my reaction was to slip back into grief and anger that Ross and our family have been thrown into this chaotic world. (Of course, this is a stage in my own development and, hopefully, I am learning to be able to adjust my focus to the positives more quickly as we go along.)
We had been in this escalation of frustration and anger for about a week when I happened to talk to a friend who cares for her brother. She told me her brother had become very combative when he was on a particular anti-seizure drug.
Wow, Ross has been on that drug for at least two years. I did some internet research and I was amazed. In clinical studies there was clearly more aggression in the patients receiving Keppra than in the placebo group. I checked with two of Ross’s doctors who both confirmed my research. So, almost two weeks ago, we started to decrease the medication and Ross is currently at 25 % of the original dose and by the end of the week we will have discontinued it. The difference is like night and day: Ross is much calmer, talking and laughing more. In fact, he is so excited that he was awake all last night. So, we are waiting for him to adjust to not being as sedated and what ever other effects he was experiencing.
To give you a picture of the new Ross, he is participating in the sign language we developed for saying I love you. He points to himself, making a round symbol in the air with his right hand (his version of the heart shape I make), points to me and laughs. Yesterday he said to me, “It is such a relief to finally have a family that loves me.” (This, of course, leads me to want to know more about his sense of time, his memory and his perceptions.) Ross is also using his voice more, and at times, he projects a deep man’s voice. He is enjoying playing around with his voice and mimicking others. Right now, he is saying, “Home” over and over with different tones, inflections and loudness. Ross is also continuing to progress in walking. He walks with the caregiver from his bed to his chair all the time and he is moving the right foot almost perfectly. We saw Ross lift his left foot without using the right one to help on two occasions yesterday.
Last night, Ross and I looked through the new Williams Sonoma catalog together. Ross, ever ready for more food, loved it. While I was talking about the gadgets, recipes and cooking with him, Ross loved the pictures of food, particularly the shrimp, cooked and raw. Using his spoon, he tried to scoop the food from the pictures. (This elicits questions about Ross’s vision.) At one point, he said, “I’m in the world now.” Another time, he said, “I’m having fun.” As we neared the end of the catalog, we turned a page and Ross exclaimed, “Oh my! Have you ever seen so much [food]?” In retrospect, I attribute the change to the reduction of the Keppra, Ross breaking through to a new level in his healing, and most importantly, God’s grace and love in our lives.
Finally, since today is July 4, I want to tell you about one of the unsung heroes of this saga. On July 4, 2002, just one month after Ross was hit by a car driving into the bike lane where he was riding, we were communicating with an incredible doctor in North Carolina. Dr. Edwin Cooper, whose son Branan is a serious amateur cyclist (a friend of Lance Armstrong and Levi Leipheimer) had heard about Ross. Dr. Cooper was telling us about a new method that might bring a patient out of a coma/vegetative state. The procedure involves applying low voltage electrical stimulation via a neuromuscular unit to the right wrist. The stimulation travels along the median nerve to the brain. At that time, there were many documented cases in the U.S. and Japan and clinical studies being carried out in the U.S. and Japan. Over a four month period, in three hospitals, we tried to get this therapy for Ross without success. Finally, unwilling to sit passively and watch Ross spend the rest of his life in a vegetative state, we figured out how to do median nerve stimulation and did it ourselves. We stepped it up when we brought Ross home. We believe this therapy was instrumental in bringing Ross back to us. So, Dr. Edwin Cooper, we thank you for your work which has been instrumental in bringing hope to the most severely brain injured of our time and in bringing back our son.

June 22, 2007--I got a long update from Betsy. They've been having Internet troubles:
June 17, 2007
Ross has had a busy week. Ross seems more agitated, but, as one of his therapists pointed out, as he becomes more aware, he is also going to be more sensitive and agitated. This is yet another stage hoped for and to be dealt with. On Tuesday, a nurse who had cared for him when he was first injured came to visit. She, of course, had known how badly hurt he was. She was delighted to see how much Ross enjoyed showing her how his chair worked as we followed him down the drive way to the mail box. She got to watch a therapy session and afterward she sat next to Ross and he reached over to give her kisses.
His sitting has vastly improved. We can briefly leave him sitting on the therapy mat and know that he will be okay. He is also doing better in walking, and we are grateful for the walker because that gives him the support to obtain lots of practice. Yesterday, he spent most of a therapy session walking on his knees. He had someone on each side, but there was noticeable improvement in static standing for brief times, and the ability to initiate movement forward with his left leg. It was also accomplished without gummy bears as motivation.
Ross also has a new food love. We are able to get organic raspberries for a very good price at out local market now and Ross prefers them to other treats.
Yesterday was Ariel’s birthday, so I made a birthday card with Ross. We looked through old pictures and found pictures of friends, our family and pictures of Ross and Ariel the day she was born. Ross enjoyed the pictures and laughed and also talked. He had a good time when we taped some of the treasured expressions used in our family to the card. At one point, he told me that “_____ has been my only job, ever, ever, ever.” Rusty called at one point and I held the phone to Ross’s ear. Ross started singing a long song with lots of drawn out expression: “I love you, I love you, I have always loved you.” When I said it was time to say good bye, he nodded his head and said “Bye”.
June 22, 2007
Our e-mail service/program has been not working and that is the reason it has been so long since I updated. If it is not one thing, it is another.
On Sunday, Father’s Day, I was showing Ross the card I bought for him to give to Rusty. Ross looked at it and said, “I always wanted to be a father.” One of the most heartbreaking things about this tragedy is that he was looking forward to having children so much. The good news is that Ross is very clearly thinking, feeling, and speaking things that mean he has made a huge advance in his recovery. The corollary of this is depression, confusion, frustration and anger. He is now in the sometimes aggressive stage and all the professionals agree that if we handle it with firm disapproval and loving reassurance afterward we will all get through it. We have an appointment this afternoon with the neuropsychologist for this very reason. Please pray for us. This whole journey is hard, but this stage is very difficult for all of us.
I should also tell you that both yesterday and today, Ross walked from bed to his chair with only Jeremiah assisting him. It is scary and awesome to see Ross shift his weight from one side to the other and move each foot forward.

June 13, 2007--email from Betsy:
Dear Kate,
The best laid plans… It is another six days since I last updated, but we have been busy. Our man Ross is continuing to amaze and delight us. On Wednesday night, as I was negotiating teeth brushing, Ross was resisting and yelling, “Stop, don’t do this. Trust me!” I was ecstatic because for years during his teens, when he wanted to do something with which we disagreed, Ross would say, “Trust me!” If the retrieval of that phrase is developmental, Ross has jumped ahead. I annoyed him for a few days with my insistence in telling other people about it. Ross showed me his displeasure by putting his head down. That night, Ross also said, “Why are you trying to chop my mouth? Don’t do that again! Promise me!”
He is continuing to stand, now with just holding someone’s hand. On Sunday, he asked to stand by saying, “Up!” The caregiver held his left hand, and Ross stood and sat five times, each time wanting a gummy bear. On Friday, Ross had stood by himself, with one therapist holding his left knee to keep it stable, and Ross holding a long dowel in his right hand like a walking stick. He had very brief moments of standing completely independently. He continues to practice walking and when we remind him to shift his weight from side to side, he is able to move his left foot and leg.
I have tried to keep track of some of Ross’s speech during the last week. On Wednesday night, he told me, “I’m scared!” The next morning, when we removed his covers, he said, “Why did you take my cover? I am cold. Cover me, please!” He asked the massage therapist, “Why are you trying to massage my entire body?” He also told the caregiver, “I am going to tell my daddy.” He also had said more than once, when we tell him he can do something new, “I can’t do that.” Or “I don’t know how.” The best was during therapy, always a time when he is working hard, and he said, “You don’t know what is going on inside of me. Everything in my body is officially broken.”
Finally, Jeremiah discovered yesterday, that Ross is writing in the air. Ross rejected the pen, but started writing in the air and Jeremiah watched and wrote it on the paper: Ross counted (by writing in the air) from 1 – 14. That’s our guy!!

June 6, 2007--a note from Betsy:
Yesterday’s trip to the endocrinologist went well. I had asked for information when I was at UC a few weeks ago about the best way to get Ross and his chair out of the van. Everything was going smoothly until we arrived at valet parking. There were signs blocking the garage and no one in sight. I drove around the outside parking lot and then saw a man walking out of the garage. I stopped to ask him if he knew anything about valet parking. He turned out to be one of the men working there and he discovered some parking places inside, near the elevator. No valet parking unfortunately (I hate trying to pull the van into small spaces with big columns right next to it). We were able to unload Ross in front of the elevators and I then spotted a handicapped space that didn’t scare me as much and with Jeremiah’s guidance I backed up safely and slid into it. Up the elevator and just a two block walk on busy, bustling Parnassus Street, and Ross was gesturing, smiling and enjoying the wind on his face. The meeting with the doctor went well. Ross resisted being examined, and after the doctor examined his neck, Ross said, “Hurt my neck”. Being specific instead of saying “hurt, hurt” is new. (The doctor was very gentle). When it was time to draw blood for the testing, he could not relax. I had thought it would be easy, because he has become a pro at having blood drawn at our local lab. I think the problem was that he was in a completely new setting with different people, and it produced anxiety. The nurse suggested we have the blood drawn at our usual lab and we will do that today. After we were on our way home, he said several times, “I want to go home to my home.” I asked him if he remembered being in the hospital. He became thoughtful and sat with his head down for about fifteen to twenty minutes. After a while, he was again watching traffic and being a back seat driver. One interesting thing the doctor told me is that the usual thyroid test is unreliable for people with pituitary injury, but there are other more specific tests that will evaluate thyroid function. Also, Ross’s thyroid is larger on one side than the other. He also said that Ross’s incessant hunger could be partly caused by the anti-seizure meds.
Two other things that Ross has said that are new ways of thinking and expressing: on Sunday at church, he looked at the woman across the aisle and asked, “What is her name?” Yesterday, when I touched his bare midriff with my cold hand, he jerked and I said, I’m sorry, my hands are cold.” He said, “Cold”.
Another busy day is ahead: therapy, a blood draw and the joy of hanging out with Ross.

June 5, 2007--a note from Betsy:
I am trying to update more frequently. We are doing some work at Ross’s end of the house, so yesterday we moved him into the master bedroom for the day. It was a new experience for Ross to be lying in our bed. Everything is different from his room. He resisted good naturedly as we bathed him and got him dressed. At one point he said, “I am freaking out.” Rusty feels that this is one of those BIG things because it shows self awareness. We had a good day and he walked again in therapy-back and forth a total of about nine feet. This morning I was standing next to him as he was lying in bed, and I saw him do a bridge with his hips. It looked like at least 16 inches up from the bed surface.
I am taking Ross into San Francisco to the UC Medical Center to see an endocrinologist today. I suspect Ross has an under active thyroid, and he undoubtedly has pituitary problems which is a common problem for traumatic brain injury patients. I am hoping the doctor can help us fine tune his metabolism because that effects so many other systems of the body.
Ross has been in a very good mood for the last few days, and I think the Ross’ Epic Hill Climb event was a wonderful experience for him. Onward and upward.

A note from Betsy, written at 9:00 PM on June 3, 2007:
It was five years ago to the hour that we walked into Santa Rosa Memorial Hospital and were told that our precious son might not live through the night. Our lives fell apart that day and our pain was so deep we could only move one step at a time. Ross was to endure six major surgeries, pneumonia and septic shock in the first four months and to be in a coma, and then a vegetative state. None of the professionals gave us any hope.
Fast forward to June 3, 2007; we have learned to celebrate not what has been lost, but what Ross has gained. Yesterday’s Ross Epic Hill Climb was the perfect way to celebrate Ross’s indomitable spirit, his perseverance and hard work, and to celebrate the contribution of all the dear people who have become part of Team Ross. Our thanks to Carlos Perez ofwww.bikemonkey.net, the Sonoma County Bicycle Coalition, and to all the many volunteers who made the Hill Climb a challenging and fun event.
Over the last five years, many people have prayed for Ross and our family, offered advice on supplements and nutrition, recommended therapists and donated money to pay for it. We truly could not have put together this model rehabilitation program without your support and Ross clearly could not have come as far as he has. And the best is yet to come!
I am happy to tell you that when Ross stood with two therapists on Friday, they were saying, “This is better than a week ago. Last week we did 75% and Ross did 25% of the work. This week, Ross is doing 75% and we are doing 25%. On both Thursday and Friday, Ross walked with a therapist of either side. On Thursday, he walked six feet to his chair; on Friday he walked nine feet.
On Thursday, when Rusty rolled the garbage out to the road, Ross came along driving his chair. This is one of the things they used to do together. Later, when Rusty was doing a standing transfer with Ross at bedtime, Ross stood up when Rusty held him. It was Rusty’s first experience with Ross’s new ability to stand. Needless to say, this was a great encouragement.
Yesterday at the race, Carlos had one of the Ross Epic medals for Ross. Later, one of the winners put his own medal around Ross’s neck. Later, Rusty was talking to Ross about the second medal and Ross said, “It’s for everyone.”
Those of you who know Ross know he loves people, especially children. We had to stop at a school crossing the other day. Ross laughed and gestured as he watched the children. Yesterday, Doug Moore captured some precious pictures of Ross and a little girl at the race.
I was also impressed by the way Ross interacted with another man, also brain injured, on Saturday. Today, I asked Ross if he would like to take some classes and he smiled in a surprised way and nodded yes. I will start exploring that tomorrow.
Thank you everyone. We are humbled and uplifted by your generous love and support. You are in our prayers.
Betsy