Current updates

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0><tr> <td valign="top" colspan=2 height=110 BGCOLOR="#666699" TEXT="#080000" bgproperties="fixed" background="00b00840erlcjm.gif"> <div> <FONT SIZE="5" COLOR="#FFFFFF" FACE="Arial" ><B>Current updates</B></FONT><B>     |    </B><A HREF="http://www.rossdillon.com" TARGET="_top" TITLE="http://www.rossdillon.com"><U><B> </B></U></A><A HREF="http://www.rossdillon.com" TARGET="_top" TITLE="http://www.rossdillon.com"><U><B>home</B></U></A></div> <div> <B>Current updates</B>   |   <A HREF="id9.htm" TARGET="_top" TITLE="Updates to May 30, 2008"><U>Updates to May 30, 2008</U></A>   |   <A HREF="id11.htm" TARGET="_top" TITLE="November 2007 update letter"><U>November 2007 update letter</U></A>   |   <A HREF="id8.htm" TARGET="_top" TITLE="Rosss Epic Hill Climb 2007"><U>Ross's Epic Hill Climb 2007</U></A>   |   <A HREF="id5.htm" TARGET="_top" TITLE="Updates to June 2, 2007"><U>Updates to June 2, 2007</U></A>   |   <A HREF="id4.htm" TARGET="_top" TITLE="Updates from Jan. 1, 2006May 31, 2006"><U>Updates from Jan. 1, 2006--May 31, 2006</U></A>   |   <A HREF="id1.htm" TARGET="_top" TITLE="2005 Updates"><U>2005 Updates</U></A></div> <div> </div> </td> </tr><tr> <td valign="top" width=190 BGCOLOR="#CCCCFF" TEXT="#080000" background="00511c00egdysm.gif"> <div> <B>Contact information:</B></div> <div> <B>Ross Dillon</B></div> <div> <B>PO Box 1509</B></div> <div> <B>Glen Ellen, CA 95442</B></div> <bR> <div> <B>Charles "Rusty" Dillon</B></div> <div> <A HREF="mailto:charlesdillon@cds1.net" TARGET="_top" TITLE="mailto:charlesdillon@cds1.net"><U>charlesdillon@cds1.net</U></A></div> <bR> <bR> <div> <B> <TABLE BORDER="0" CELLPADDING="2" CELLSPACING="1" WIDTH="157" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BOX" RULES="ALL" ALIGN="BOTTOM" HSPACE="0" VSPACE="0" BGCOLOR=#666699 > <tR> <tD VALIGN=TOP HEIGHT= 231 WIDTH="151"><div> <A HREF="http://www.rossdillon.com/id19.htm" TARGET="_top" TITLE="http://www.rossdillon.com/id19.htm"><U><B>WaterStone</B></U></A></div> <div> <B>for donations to Ross:</B></div> <div> <A HREF="http://www.rossdillon.com/id19.htm" TARGET="_top" TITLE="http://www.rossdillon.com/id19.htm"><U><B>Credit Card Deposit Form</B></U></A></div> <div> <A HREF="http://www.rossdillon.com/id20.htm#anchor" TARGET="_top" TITLE="http://www.rossdillon.com/id20.htm#ancho"><U><B>Direct Donation Form</B></U></A></div> <div> <A HREF="id11.htm" TARGET="_top" TITLE="November 2007 update letter"><U><B>Current progress letter</B></U></A></div> <div> <A HREF="id10.htm" TARGET="_top" TITLE="July 2007 letter"><U><B>Past letters</B></U></A></div> </tD> </tR> </TABLE></B></div> <bR> <div> <B> <TABLE BORDER="0" CELLPADDING="2" CELLSPACING="1" WIDTH="148" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BOX" RULES="ALL" ALIGN="LEFT" HSPACE="0" VSPACE="0" BGCOLOR=#9999FF > <tR> <tD VALIGN=TOP HEIGHT= 129 WIDTH="142"><div> <A HREF="http://www.rossdillon.com" TARGET="_top" TITLE="http://www.rossdillon.com"><U><B>Ross's Home page</B></U></A></div> <div> <B>for earliest updates to January 2, 2005</B></div> <bR> <div> <A HREF="id1.htm" TARGET="_top" TITLE="2005 Updates"><U><B>updates from 1/2/05</B></U></A><B>    </B></div> <div> <A HREF="id4.htm" TARGET="_top" TITLE="Updates from Jan. 1, 2006May 31, 2006"><U><B>updates from 1/1/06</B></U></A></div> <div> <A HREF="id5.htm" TARGET="_top" TITLE="Updates to June 2, 2007"><U><B>updates from 6/1/06</B></U></A></div> </tD> </tR> </TABLE></B></div> <bR> <bR> <bR> <bR> <bR> <bR> <bR> <bR> <bR> <DIV ALIGN="LEFT"></DIV> <div> <B>Questions about this site: </B><A HREF="mailto:kate@katedouglas.com" TARGET="_top" TITLE="mailto:kate@katedouglas.com"><U><B>Kate@katedouglas.com</B></U></A></div> <bR> <bR> </td> <td valign="top" height=370 BGCOLOR="#FFFFFF" TEXT="#080000"> <div> Current updates</div> <div> <I><B>On June 3, 2002, while riding his bicycle in a wide bike lane along an unobstructed stretch of rural road, 25 year old Ross Dillon was struck from behind by an innattentive driver. In that one, pivotal moment, Ross's life, and the lives of his family and friends, were changed forever. His care has been chronicled in an online diary, beginning at </B></I><FONT SIZE="3" COLOR="#0000CC" FACE="Arial" ><A HREF="http://www.rossdillon.com" TARGET="_top" TITLE="http://www.rossdillon.com"><U><I><B>www.rossdillon.com.</B></I></U></A></FONT><I><B> His is a story of amazing courage and resiliance, and the very stubborn love of a family unwilling to give up on his journey toward recovery.\</B></I></div> <bR> <bR> <div> <B>July 2, 2009--Just received a long update from Betsy:</B></div> <div> It has been another eventful month, but aside from a minor scare on June 6, the day of the Ross Epic Hill Climb, and a couple of seizures, Ross has been improving on all fronts. On the morning of the sixth, Ross was flushed, had elevated blood pressure, a high respiration rate and his axillary temperature was 100. We agreed that we needed to stay home. I gave him Advil, vitamin C and a homeopathic remedy for virus symptoms. By noon, his temperature was normal and he was feeling better. Again, we can only hypothesize why. It has been a terrible time for hay fever this spring and many of us were congested. Ross has been more congested than usual for two or three weeks, despite all my efforts. It could have been hay fever, but I have another possible explanation. I have been thinking that this fever and the previous fever in April <U>could </U>be related to the healing in his brain. We were told by the LENS practioner that as Ross’s brain equilibrates itself, some symptoms that he once had might briefly reappear. During the first forty-two days post injury, Ross had raging neurofevers, the cause of which was never determined. It is possible that milder artifacts of those fevers are occurring as the neuro suppression in the brain comes off. As I think in this vein, I wonder if his worsening congestion for a while was a result of a lifting of neuro suppression, especially since he is much less congested now.</div> <div> We also have been able to cut Ross’s antiseizure medication Tegretol back to the pre 2008 dosage because his blood levels had climbed to a toxic level. He has been calmer and less tired since we reduced the Tegretol dosage. We are still tapering the Lamictal and that is going well.</div> <div> On the motor skills front, Ross is learning to pull himself up at the transfer pole. One day he pulled himself up with the transfer pole while our backs were turned. He is pulling himself up and then walking around the pole to the right and also to the left to his wheel chair. We are standing guard to help him if he needs it, but he is doing at least fifty percent by himself. A week ago, Ross walked down the hall to the kitchen with Letha (OT) on one side and Jeremiah on the other. Letha said it was the first time Ross seemed aware of his core (trunk balance and strength) and his arms. </div> <div> He is also now able to track the interaction in a group. Last week at the LENS session, the practitioner, Rusty and I were talking and Ross was following our conversation and looking at each one as we spoke. The day before, Ross said, while looking at me, “Yellow, red, blue!” Then he looked around to Letha and the assistant and said, “Blue, blue!” He again looked at me and said, pointing to my shirt, “Yellow, red, blue and white.” I was wearing a blue shirt with yellow and red embroidery over a white shirt. The others were also wearing blue shirts. Letha asked him, “What color are your pants?” Ross looked at his pants and correctly said, “Green!” Afterward, as we walked into the house, he wanted to go into his room. He sat down on his bed, then lay down and pulled his feet up onto the bed. When Letha told him it was time to walk more, Ross said, “I don’t have a body.” I held up a mirror so he could see his body. Then he said, “Currently, I’m a face. That is the only thing.” He did stand and walked some more. It seems that demanding physical exertion drives his verbal advances. We have to be careful though because if he becomes too exhausted, he becomes more confused. Yesterday’s therapy was exhausting and we noticed that he was more confused for the next twenty-four hours. </div> <div> Last week I bought Ross a couple of 100 word jigsaw puzzles. When I sat with him to work on the first one, I took out the straight edged pieces and set them up so we could put together the border. I was amazed that he was able to spot two pieces that fit, not just once, but five or six times. He also kept explaining, “Mom, Mom” because as we were completing the border, it was obvious we didn’t have all the pieces. Over the next two days, he continued to show that he can see shapes that fit together. </div> <div> After his LENS session last week, we stopped on the way home to get coffee. We hadn’t had an outing like that in a long time. We went to a small shopping center that has a nice courtyard. We started with a latte (soy because he is lactose intolerant) for Ross. He was very happy to be drinking his coffee, and he wanted ours when he finished his. There was pizza shop, so I ordered pizza. Ross loved it and there were few outbursts. I did have to move him away from the table when he finished so the aide could have his pizza. It was so much fun and I decided to do it more often. While we were there he looked at the newspaper, said “Michael” and then spelled the word. This week, I sat down to read Dr. Seuss’s Are You My Mother? Ross started reading some of the words out loud and was obviously reading each page from left to right. We have continued to read it each day. Yesterday, he read some of the book out loud; some words were clear, others were word salad, and for the others his tongue was moving. Tonight, his reading was stronger and he continued to read each page from left to right. So I have started digging through boxes to find appropriate children’s books for this wonderful new development. Just as I was beginning to despair that Ross, the voracious reader, might never read again, it is happening. God is good! Onward and upward!</div> <bR> <div> <B>June 3, 2009--Today is the 7th anniversary of the day Ross's life and the lives of his family were forever changed. I just received an update from Betsy:</B></div> <div> Today, June 3, is the seventh anniversary of that terrible day when Ross's life was changed. We keep hoping that remembering won't hurt as much and that we will forget the details.  Rusty and I have been feeling the anniversary blues for the last few weeks. It started earlier this year because Ariel was hit head on by an inattentive driver while she was driving to an early afternoon class on a suburban street on May 11.  Miraculously, she walked away from the crash, although her car was totaled. She has been very brave, but it has been hard for her and us.  In fact, the day after her accident, I was talking to Rusty on the phone about how Ariel was in pain and very upset. I heard Ross who was sitting behind me make a strange noise. I rushed to him and saw that he was sobbing and it lasted a long time. I remembered how he used to worry about us being okay, so I explained that I knew he was worried about his sister and she was safe. I held him until he was calm.</div> <div> As we have learned in these last seven years, blessings are always mixed in with the hard issues of life. That Ross was aware of my phone call and Ariel's misfortune is an indication of his increased cognitive functioning, understanding and his increased interaction.  As always, I think a description of what Ross says and does provides a good picture. He seems to be accelerating in the area of cognition and language.  I see this in his communication skills, his use of language, and his increased memory and insistence on routines. Finally, he is still advancing in walking, rolling to his side, and doing what he is asked .  A few weeks ago, Ross asked the Occupational Therapist, "How am I doing?" This was a first, another BIG event. It showed introspection and concern for her opinion.</div> <div> Today Ross was pedaling, seated in his chair with his feet strapped in the pedals on the bike. Ross pedaled for a while, then stopped. We told him to pedal a little longer. Ross pedaled for a while, then he stopped.  Jeremiah asked, "Are you finished." Ross nodded affirmatively. When Jeremiah did not immediately move, Ross said, "feet, feet".  Jeremiah asked, "What do you want me to do with your feet?" Ross responded, "Untie my feet!" meaning unstrap my feet from the pedals.</div> <div> Another time, Ross was trying to communicate what he wanted with gestures.  When we didn't understand, Ross said, "You don't have a head!" It was a very symbolic way of saying, "You don't understand."</div> <div> Last week we were driving by a McDonalds on the way to an appointment. Ross pointed to the sign and said, "Mom!" I asked if he wanted to eat at McDonalds. I then launched into a one sided conversation about how we used to stop somewhere else for hamburgers. We went to our appointment and did not stop at the Mexican Restaurant for enchiladas (something we frequently do). When I pulled up to our house a couple of hours later, Ross became agitated, saying over and over, "Mother, Mother, Mother!"  The only explanation I have is that he thought we were going to stop for food, which means he had to remember the earlier conversation or linked Mexican food to going to the chiropractor.</div> <div> Today, I heard Ross calling me, "Mama, Mama, Mama!"  I went to his room and Ross said to me "You are my mother?" He also now expects me to sit beside him to watch the TV show <I>Jeopardy. </I>For example, tonight I was sitting close by, but he again started saying, "Mother, Mother" until I came over to sit next to him.</div> <div> Last week, Ross started walking, holding the bar with his right hand and Letha's hand with his left hand. It was amazing to watch.  However, this week at his next session, he was tired and confused and just couldn't put it together. As he was seated after one extremely difficult trip across the room I decided to show him the pictures I had taken during the previous session.  He looked at the pictures in the camera and ,as I pointed out how he had walked the previous week, he started to move each leg as if walking and to move his shoulders in like fashion. It was wonderful to watch because he obviously understood what I was saying and remembered what he had done a few days before.</div> <div> We have given Ross something new to do and he is enjoying the change of pace. We have a magnetic white board with letters and magnets and, with direction, he places them in order, moving them from one spot to another and using his left hand some of the time. We are thrilled and we think Ross is self aware enough to also be thrilled with his progress.</div> <div> Finally, the third annual Ross's Epic Hill Climb is this Saturday, June 6. For information and to register, go to <A HREF="http://www.bikemonkey.net" TARGET="_top" TITLE="http://www.bikemonkey.net"><U><B><U>http://www.bikemonkey.net</U></B></U></A><B><U> </U></B>, click on Events, and then click on <A HREF="http://www.bikemonkey.net/?page_id=63" TARGET="_top" TITLE="http://www.bikemonkey.net/?page_id=63"><U><B>Ross's Epic Hill Climb</B></U></A><B>.</B></div> <div> Onward and upward!</div> <bR> <div> <TABLE BORDER="2" CELLPADDING="2" CELLSPACING="1" WIDTH="879" BORDERCOLORLIGHT="#666699" BORDERCOLORDARK="#330066" FRAME="BOX" RULES="ALL" ALIGN="BOTTOM" HSPACE="0" VSPACE="0" BGCOLOR=#CCCCE4 > <tR> <tD VALIGN=TOP HEIGHT= 215 WIDTH="867"><div> <B>Freelance author David Darlington's</B> 2008 Bicycling story about Ross, Jill Mason, Alan Liu and Danny O'Reilly has been nominated for a National Magazine Award in the category of Public Interest. Together with the feedback reported by Christine Culver, Andy Clarke of the League of American Bicyclists, and the editors of Bicycling, the article is continuing to help shed light on our society's inattention to the vulnerability of cyclists. </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <B>April 30, 2009: </B><A HREF="http://www.magazine.org/asme/about_asme/asme_press_releases/2009-nma-winners-announced.aspx" TARGET="_top" TITLE="http://www.magazine.org/asme/about_asme/"><U><B>44th Annual National Magazine Awards Winners Announced!</B></U></A></div> <div> <I><B>Congratulations, David!</B></I></div> <div> <A HREF="http://www.bicycle.net/2007/broken-by-bicyclingcom" TARGET="_top" TITLE="http://www.bicycle.net/2007/broken-by-bi"><U><B>Read the article</B></U></A></div> <div> <B>Beating out articles from Newsweek, Vanity Fair, Mother Jones, and Business Week, Bicycling's "Broken" won the 2009 National Magazine Award for Public Interest in a ceremony at New York's Lincoln Center.</B></div> </tD> </tR> </TABLE></div> <bR> <div> <B>May 1, 2009--It's been awhile since Betsy's last update, so there is a lot of news in this one:</B></div> <div> Writing an update has been on my mind for weeks.  Unfortunately, my resolve to sit down and write is continually pushed out of the way by day to day routines that cannot be ignored and by the need to nap in order keep going.</div> <div> As I reported last time, Ross is again making very clear progress. </div> <div> On Easter Day, we had a houseful of friends with whom we gather for holidays.  Our friend Gerri kindly provided the dinner. Rusty wanted Ross to walk down the hall to the dinner table. With Rusty on one side, and one of our aides on the other, Ross had us in tears as he, standing tall, moved first one foot and then the other, beautifully transferring his weight with each step.  I had decided it was safer to have him sit in his wheel chair because if he became combative (thanks to his brain injuries), there would be no chance of tipping his chair over. As usual, Ross loved the food and ate it almost as quickly as I could cut it and put it on his plate.</div> <div> Everyone was amazed at how much food he ate.  Finally, when he had eaten dessert, he became agitated because I wouldn't give him more food.  As I wheeled him away from the table, I was glad he was already in his wheel chair. After we put him in bed, he was a happy guy with a full tummy and a dreamy look on his face. </div> <div> Ross has continued to progress in motor skills: he pulls himself to standing using the transfer pole, is walking with assistance, and is beginning to walk with a walking stick. His cognitive progress has accelerated. He continues putting puzzles together.  Two weeks ago when I gave him an alphabet puzzle, he amazed us by completing it right away.  When he isn't interested in working the puzzle at his table, but instead is watching me at work in the kitchen, we encourage him to work by putting one of the puzzle pieces in the wrong spot. He will then correct the placement and work the puzzle.  Some of the pieces look the same on both ends (for example, S), but will only fit if the smaller side is on top. I have discovered that I only have to say, "Ross, I think you need to turn it 180 degrees" and rotate my hand in the air.  Ross immediately corrects the placement by rotating the puzzle piece. Yesterday, before dinner he worked all seven of his wooden object puzzles (excluding the alphabet one) in fifteen minutes while he waited for dinner.  </div> <div> We had an interruption about ten days ago. Ross was doing well and had a great evening laughing and cracking jokes. The next morning he slept until nine, and then had two large seizures two and a half hours apart. When I took his underarm temperature, it was 101.8. I knew the seizures could be because of the fever, but why the fever? He was definitely not feeling well and Rusty and I, after conferring with the neurologist, decided to take him to the Emergency Room. The doctor ordered tests and did a CT scan of Ross's head. We were devastated when the doctor said, "It looks like either fluid on the brain or an infection."  They then did an MRI, but had to keep sedating Ross to keep him still enough for the procedure. Rusty, Ariel and I were becoming really worried. The doctor wanted to transfer Ross to UCSF, but UC did not have a bed available. In the meantime, we were also waiting for a bed at the hospital in Santa Rosa. Finally, at 2:30 A.M., twelve hours after our arrival, Ross was taken to a room adjacent to the ICU where he spent forty-four days in 2002. We were relieved to finally have a room.</div> <div> Rusty came home to get some sleep and I sat in a chair by Ross's bed through the night. I am grateful that I was able to be with him the whole time, both in Santa Rosa and San Francisco. He is so easily confused and agitated that he needs one of us to mediate for him and to calm him by our explanations and presence. Ross was started on IV antibiotics in Santa Rosa.  Finally, on Thursday night, two days after going to the ER, Ross was transferred to UCSF.  When we arrived on the neuro floor around midnight, a resident came to see us. He was familiar with Ross and promptly went off to compare the scans we brought with the ones on file.  He returned half an hour later with the wonderful news, "There is no change."  What the radiologist in Santa Rosa saw was scarring from the previous infection and the shadow of the prosthetic bone flap. In addition, he said, "Ross is looking a hundred times better than he did last year. He said they would keep him a while for observation, but much to our relief, at 6 P.M., we were told that Ross's neurosurgeon said Ross's cultures were clear and he could go home.  We were very happy as we brought our tired guy home. I don't think anyone was happier to be "going home" than Ross.  In fact, he had become petulant on Wednesday when I told him we could not yet go home. He had turned his head, refusing to look at us, and pouted. </div> <div> I was impressed the whole time with Ross's ability to control his fear and alarm as I explained what was happening and coached him. For example, "Ross, this lady is going to take a blood sample. Show her how well you keep your hand still and watch."  Ross would sit still and watch intently.  He even sat still for a chest x-ray.   </div> <div> One last story! Ross surprised us all when we went to his LENS treatment yesterday. He sat quietly as the practioners attached the sensors to his ears and to different spots on his head. She made a point of telling him what she was doing and, before doing anything, she waited until he nodded or made an indication that he was ready.  He did not become scared and he even sat through the whole session, about twenty minutes, without having any food to distract him.  As we say, this was BIG.  Another big event occurred a few minutes ago. Jeremiah put on his jacket, and Ross said to him, "Father, you go home now?" As I sit here typing, I can hear Ross talking in complete sentences to the television. </div> <div> So, onward and upward! Life is not a bed of roses, but it is very good.</div> <bR> <div> <B>March 23, 2009--Betsy finally had a chance to send me an update--I sometimes wonder when she finds time to breathe!</B></div> <div> <IMG SRC="0d3fa4d0.jpg" border=0 width="250" height="333" ALIGN="LEFT" HSPACE="6" VSPACE="0">Well, few things are easy. Just as I was becoming confident that tapering the antiseizure drug Lamictal was not going to be as hard as I feared, Ross did have a seizure. It happened when I reduced the daily dosage by 50mg six days after the previous reduction. The next day brought several partial seizures followed by a grand mal that had two phases. The next two days Ross had head aches, nausea and felt terrible. I determined this by asking Ross questions and he answered with head movements. His neurologist agreed to increasing the dosage of herbs Ross takes to reduce glutamate uptake in the brain (one of the biochemical mechanisms in seizures). This has helped, but I also discovered (another benefit of the internet) that Lamictal is available in 25mg doses, which allows us to taper by 25mg instead of 50mg. This is much easier on Ross, even though we are seeing a small partial seizure within a day of each decrease. Because of this, Ross is staying on each level for two weeks. It will take longer for Ross to be finished with Lamictal, but it is easier for him. </div> <div> The good news is that Ross's walking and standing is getting better. He is pulling himself to standing by learning to grab the pole with his left hand (he regularly grabs with his right hand). He is crawling and moving his left leg from the hip. All the great work his physical therapist is doing in stretching his legs and hips are increasing his strength and agility. She also has him standing on his shoulders (with lots of support), which is helping to drive the neuronal connections in his brain. He is walking with support, lifting his left leg and putting it forward almost as fluidly as the right foot. He is learning to walk with a walking stick and the support of someone on his left. <IMG SRC="0d1fa4d0.jpg" border=0 width="250" height="333" ALIGN="RIGHT" HSPACE="6" VSPACE="0"></div> <div> In bed, he is rolling with ease when he is in bed, and this morning he turned to his side, almost onto his stomach. This is exciting as progress, but also it is a way he can help himself to be more comfortable or even reduce nasal congestion. Of course, Ross's progress means we need to be more careful in protecting him from falls while facilitating more independence. Once more, I am grateful that we are able to have someone with him around the clock. </div> <div> The difference between Ross in a confused state and when he is alert is more obvious now. He is communicating more and we have two way conversations. The chiropractic neurologist has told us to expect more outbursts as he gets better. The occupational therapist has told us that the first thing Ross will say may be what is most accessible. I think an example of this is that he will laugh heartily and say, "I hate you!" At other times, he seems to be playing around with linking words. We still hear "I love you!" frequently. Yesterday, he asked me if he could be my husband. There are times when he is laughing, but his eyes are filled with tears. I think that he probably is crying at these times. </div> <div> His movements are quicker and more precise. He did the first Magneato construction by himself last week. When Jeremiah tried to add a piece, Ross pushed Jeremiah's hand away. <IMG SRC="0cffabc0.jpg" border=0 width="250" height="188" ALIGN="LEFT" HSPACE="6" VSPACE="0"></div> <div> Ross is still receiving LENS treatments. We are pleased with his progress and clearly Ross is improving neurologically. It seems that Ross is almost back to baseline (before the surgeries of 2008). He has not been spelling as he did before, but he is beginning to write again. The LENS therapist has said that if he was spelling before last year, it is still there and is accessible. He also has started to talk about pain, and is able to tell us when he is in pain. Sometimes it is indirect as in this exchange. Ross said to Jeremiah, "I love my head". Jeremiah said, "I love my head too; what is wrong with your head?" Ross replied, "Pain, pain!" </div> <div> Oh, one last change in our routine. We discovered that Ross was less congested when we ran out of the nutritional gummies (they had a small amount of sugar). So, no more gummies, but after trying different combinations, I am now making little treats that are soft, small and easily picked up by Ross of dates, coconut and almonds. Now with the gummies (as we call them), just about everything I give Ross is home made. I spend a lot of time in the kitchen, but I like knowing just what he is eating. </div> <div> As Ross is progressing, I feel that our sails are filled with wind again and this will be a better year. Ross is working hard, he is much calmer, and he is happier. And when Ross is doing well, our family is too.</div> <bR> <div> <B>February 14, 2009--I was getting worried and asked Betsy for an update--they've been BUSY!<IMG SRC="0cc5e070.jpg" border=0 width="350" height="263" ALIGN="RIGHT" HSPACE="10" VSPACE="0"></B></div> <div> No, we did not go on vacation. We are busier with extra appointments and more to do. Ross continues to make great progress, both in motor skills and cognitive functioning. There are two good things to report. </div> <div> Ross's seizure activity has calmed in the last few weeks as we have seen fewer absence and partial seizures. He has had only four significant events during 2009. </div> <div> On January 16, he had a grand mal that lasted about three minutes, but was less intense than usual. Eight days later, he had another grand mal, but it was very mild. Eight days after that, he had a ten minute absence seizure. It started as usual with Ross staring off to the right, but it didn't progress beyond that. Eight days later, this week, he had a couple of absence seizures. Neurofeedback therapists believe that sometimes aggressive outbursts in the TBI patient are really a form of seizures. Our experience in the last six weeks is that Ross is calmer and experiencing fewer observable seizures and we believe the LENS is partially the reason. </div> <div> In addition, he is progressing in walking, lifting each foot in turn. Last week, he was practicing standing against the wall and lifting his right foot while standing on his left foot. He also surprised us last week when we were asking him to scoot his bottom back in the wheel chair; he suddenly stood up all my himself. It was exciting to see and a warning that we have to be careful to protect him from falls. He also has started rolling on to his side while sleeping. </div> <div> This week he has been crawling on the mat and just stood on his knees independently for almost a minute. He then walked on his knees, pulling his left knee forward on his own. Yesterday, we mixed the pieces of two wooden puzzles around the bases. Ross, by looking at the shapes of the individual pieces, determined in which space to put each piece and he did it all by himself. I am including a picture of the puzzles before he put them together. </div> <div> On Wednesday, Ross had a routine appointment with his neurologist. I have been concerned about one of Ross's antiseizure medications that he started in the summer of 2007. The doctor had hoped the drug, Lamictal, might replace the Tegretol which he also takes. However, even though Ross was taking the maximum dose, his blood levels were never therapeutic. One of the serious side effects is a red rash and over the last four months I have noticed some off and on iffy looking rashes.I had also started to wonder if the staph infection had been potentiated by Lamictal. The doctor took my concerns seriously, examined Ross, and checked the internet where he found a blog on which the writer said she had developed staph after taking Lamictal for a couple of months. So, we are tapering Ross off the Lamictal. I am concerned about the side effects of withdrawal, but Rusty and I believe that it is the right thing to do. Once again, we are thankful that Ross is under the care of a thoughtful doctor who listens to our concerns. </div> <div> For the last two days, Ross has been happy, calm and more alert. Onward and upward!</div> <bR> <div> <B>January 19, 2009--a terrific update from Betsy:</B></div> <div> Ross is doing very well. Despite his cold lasting for weeks, his speech is blooming again. On New Years Eve, while I was trying to use the nasal spray for his nose (sometimes he wants it and other times he doesn't), he became very angry with me. Rusty sharply told him to be nicer to me. When Ross calmed down, he said, "Mother, don't worry. Nothing happened! Father, nothing happened." That level of analyzing and speaking is a new development. Later that day, he started singing, "Boom, boom!" </div> <div> The next day, he was telling us, "Don't hurt my back! Don't, I'm serious!" We were not doing anything that hurt, but we think he is newly aware of pain he didn't feel before, and he was warning us to be careful. Later he asked me, "Pour me some (coffee)." Then he said, "You just go while I eat my food." </div> <div> Another day, while trying to convince Jeremiah of something he said,"Father, why don't you trust me? I am the king! Obey me!" A few days later, after his physical therapy session, he looked at the therapist's tee shirt with interest. I asked him if he liked it and he said, "R O X Y", spelling the logo on the shirt. He also said, after scooting himself back in his wheel chair, "I am awesome at picking up my bottom!" </div> <div> He went to the dentist for the first time in over a year a week ago. We kept having to postpone his appointments because of the various surgeries last year. A dental visit involves sedation, the oral surgeon, the dentist, the hygienist and the surgeon's assistants. Ross surprised me in that he sweetly accepted having no food before the 8:30 AM appointment. He was very cooperative and calm through the whole process of x-rays, being anesthetized, and waking up. He had a speedier recovery than ever before. The only negative of the experience is the deep staining and wear on the enamel that both the hygienist and dentist think is related to the anti seizure medications. </div> <div> He was very cooperative at his LENS appointment on the seventh, but a week later, seemed to be wary of anyone but Jeremiah touching him. When the therapist compared the brain maps of the two weeks, it showed that there is more activity now. Some areas are showing higher frequency. It is to be expected that he may be more frightened. </div> <div> Letha, the OT, has been on vacation. Today, she started the session with Ross standing by pulling himself up using the pole. He than leaned against the wall, turning and walking sideways. Afterwards, he walked across the therapy room and back on his knees, moving very quickly. When it was time to do some distance walking, he didn't want to walk so he started to sit down. Letha and Jeremiah let him do what he wanted, lie down on the floor while they protected his head. Letha asked him if he wanted to stay there, or walk to the chair. After about five minutes, he indicated he wanted to get up and he walked to a chair just inside the house. After resting, they had him walking again down the hall to his recliner in the living room. It was awesome to watch because he was lifting each foot and bringing it forward. He only needed help with the left foot for two steps. Letha said it was the best session since before the January surgery last year. When she asked Ross, "What do you think I should put in my notes that you did best today? Should I say your walking was best?" Ross thought for a while, and then he said, "All of it!" </div> <div> Onward and upward!</div> <bR> <div> <B>December 30, 2008--just received a note from Betsy:</B></div> <div> Once again I apologize for how long it has been since the last update. It has been a busy few weeks and we all have been sick for the last week. We went to a Christmas party on Sunday, the 21st. When Ross's friend Jon greeted him, Ross said, "Who are you?" While that response may seem disappointing, I think it really indicates that Ross is now able to speak up, rather than being evidence of regression. Ross enjoyed watching the many little children and, of course, he loved the food. However, after an hour and a half, I could see he was becoming overwhelmed and we left. As we drove back in the dark and rain, Ross watched the traffic intently. </div> <div> A few nights before, in the middle of the night, Jeremiah heard Ross saying over and over, "Woman, I am not going to die! I will live. I will live." All who have heard this story believe that this goes back to those early days when he was in a coma and we were praying that he would survive. There are many stories of those who remember what people were saying while they were in a coma. I believe that one day Ross will tell us what he remembers. </div> <div> Since Wednesday, Ross has been sick with a bad cold. He has had a low fever and has been miserable with pain and congestion. He starts out feeling miserable in the morning and then feels a little better as the day progresses. He spent most of today in bed, but when he walked (with help) from his bed to his chair, he started with his left foot and walked bilaterally to the chair, turning completely before sitting. Usually he turns halfway and sprawls on the seat. </div> <div> Ross has not had a LENS treatment for almost two weeks; we canceled last week because of his cold. I had asked the practioner what the mapping of his brain showed. What she reported is consistent with a TBI. The dominant frequency is very low, as in the frequency of sleep, but were high amplitude, showing irritation of the brain. At the last session, she briefly gave him stimulation (one second) at one site with the goal of calming his irritated brain. It would appear that Ross's improved cognition and communication is related to the treatment. I am encouraged by the possibility that as the treatments continue, Ross's dominant brain waves will be more normal. Interestingly, the few seizures Ross had had in the last month have been milder, another possible effect of the LENS treatment, as well as a result of the lower ICP made possible by the shunt repair two and a half months ago. </div> <div> The last year has been very hard for Ross and I have recently realized that we didn't fully understand how invasive the January and April surgeries were. Rusty and I are encouraged that he is regaining speech and we are looking forward to the coming year. Thank you so much for your love and support. Happy New Year to all of you!</div> <bR> <div> <B>December 6, 2008--another great update from Betsy:</B></div> <div> <I>Baby, Baby, Baby!</I> Ross woke up this morning with those very clear words.  What is significant to me about this is that he and his friend Jon used to have a lot of fun with saying, “Baby, baby”, “Just appreciating” and other short expressions. The tone or context was the funniest part. This morning, Ross said “Baby, baby” over and over and laughing while he said it. Then, “Baby, baby, I need food. I am the king and I need food! You are my mother; I need food! I am a man; I need food!”  All of this was spoken softly and with humor, with none of the anger and fear with which we are familiar. He even counted 1, 2, 3, 4, and 5. As he ate his breakfast, his chewing was more controlled and thorough.  Yesterday, when he was pedaling, it was not the slow, pedal, stop, pedal that we have seen lately. He was spinning like the old days of training. And for the last twenty-four hours we have seen more smiles and chuckles than in a long time.  During his therapy session yesterday, he made significant advances in walking on his knees, standing with his weight over his feet and almost no signs of severe confusion.</div> <div> So what is different? Well, all of us are thinking it is the result of the LENS neuro feedback session he had on Wednesday. This was the third session (the first two were in September before the shunt repair).  We noticed a change then, but the therapist wanted to wait until Ross's difficulty with the shunt had passed.  We think that the treatment has helped to calm his brain waves and that results in him being more comfortable and this better functioning. I don't want to make the mistake of oversimplification, but we are definitely looking forward to more sessions for Ross. In the meantime, there is a review of a book about the history of LENS that explains the technique somewhat. </div> <div> <FONT SIZE="3" COLOR="#000066" FACE="Arial" >The link is  </FONT><A HREF="http://www.townsendletter.com/April2008/ltr_white0408.htm" TARGET="_top" TITLE="http://www.townsendletter.com/April2008/"><U><B>http://www.townsendletter.com/April2008/ltr_white0408.htm</B></U></A><B> </B><FONT SIZE="3" COLOR="#000066" FACE="Arial" >. We will keep you updated about Ross's progress. In the meantime, we are grateful that Ross is feeling better and we are optimistic that these treatments will be beneficial. I am also wondering if Ross is going to be treating us again with his wonderful sense of humor and word play. Thank you for your love and prayers.</FONT></div> <bR> <div> <B>November 21, 2008--a terrific update from Betsy:</B></div> <div> As usual, we have been busy. Ross finished the month long regimen of antibiotics on November 4. Thankfully, he didn’t have digestive upsets this time, probably because of the stronger digestive enzymes that he has been taking. When Ross finished the antibiotics, he was able to again take the herbal supplements that have helped his cognitive progress and, hopefully, reduce seizures. Ross is still making great advances in motor skill development, lifting his left foot and moving it forward, almost as well as he moves his right foot. He is rolling around in his sleep, lying on his side. He is also sleeping through the night, possibly because moving in his sleep allows him to be more comfortable. His speech is improving and a few days ago, when he saw a bus while watching television, he said, “Bus”.  <IMG SRC="0ca68e00.jpg" border=0 width="360" height="480" ALIGN="RIGHT" HSPACE="10" VSPACE="0"></div> <div> When he is driving his wheelchair around in the driveway, he now likes to stop at the car and he communicates that he wants to sit in the car. A couple of days ago, he got a short ride in the passenger seat of Jeremiah’s car. Watching, as he and Jeremiah drove off, reduced me to tears. It was so normal, but poignant because he used to love driving himself. We are so proud of Ross; he works so hard to regain his life. We can see that he is often confused and overwhelmed, which is scary for him. </div> <div> Yesterday, he had a number of breakthroughs in therapy. For the first time, he stood with his weight completely over his feet, his left hand holding the pole, elbow bent, while he leaned forward to take a gummy off the pole with his right hand. The therapist kept saying, “This is what we have been working for and today he is doing it”. While we were elated with that, Ross and Rusty and I were really jazzed when we got him on the exercise bike. Up until now, he has only pedaled in the recumbent position, seated in his wheel chair. It took three people to get him on the bike, but as you can see in the picture, he briefly settled in to it, as if the memory of all those hours on the bike was evoked. Notice his hands and how they are bilaterally wrapped around the handle bars. It was hard for him, it was uncomfortable because he had not been on a bike for six and a half years, and he was frightened. But afterward, he was ecstatic and he kept laughing and talking. He didn’t even clamor for food as he waited for lunch. </div> <div> Then, at dinner time, he had a grand mal seizure, eleven days after the last one, and only the second since being released from UC. What is common to both seizures is that they were preceded by exceptionally successful therapy sessions with wonderful breakthroughs. He slept soundly, and this morning is laughing and talking. For now, it seems that seizures are again part of Ross’s life and that his brain is very sensitive to fatigue and excitement. I suspect that he is becoming acclimated to the new lower ICP (Intracranial pressure) since the shunt modification. I am learning more about the chemical part of seizure activity, and over time will be adding in some more nutrients that are supposed to help. Please continue to pray for Ross. We are frequently reminded that Ross is a trailblazer and has come so much further than the initial prognosis. We are blessed and we are so happy to report that his therapists do not see a ceiling on his progress. Thank you for your love and support for our son.</div> <div> We are gearing up for our annual Thanksgiving celebration. Thanksgiving has always been Ross’s favorite holiday, and this year, he will sit at the table in a dining room chair, not his wheel chair. Happy Thanksgiving from the Dillons!<FONT SIZE="3" COLOR="#000066" FACE="Times New Roman" ><B> </B></FONT></div> <bR> <div> <B>October 30, 2008--an update and photo from Betsy:</B></div> <div>    <FONT SIZE="3" COLOR="#000066" FACE="Palatino Linotype" ><IMG SRC="0c9a9590.jpg" border=0 width="425" height="345" ALIGN="LEFT" HSPACE="5" VSPACE="0"></FONT><FONT SIZE="3" COLOR="#000066" FACE="Arial" >While he is waking up with headaches and is not sleeping as much at night, Ross is having a good therapy week.  He still has very definite ideas about what to do.  On Monday, he wanted to walk outside, so our wonderful OT agreed.  When Ross, with Letha and Jeremiah's support, reached our adapted van, he wanted to get in (without the usual wheelchair) and sit on the back seat.  It was hard work and took three of us helping him.  He put his right knee on the floor inside the van, then the second one. He was then able to pull himself up on the seat and turn to sit. He worked so hard that he was shaking,  but he was also so excited that he turned to Letha, conveying pride in his accomplishment. (I am enclosing a picture I took.) He wanted us to drive, so we took a little ride, about a tenth of a mile.  He was very happy. Getting out of the car was easier and he walked back into the house to sit on a dining room chair.</FONT></div> <div>         Ross has one more week of antibiotics; then he can resume taking the herbal products that have been so helpful, and hopefully his headaches will diminish. He is also using his left arm more and more.  My dream is that he will be able to walk with a walker in 2009.  That is a task that requires using his left arm for support and consistent movement of his left foot.</div> <div>         One last example of Ross's coping skills.  Yesterday, I gave him a couple of rice crackers that I had broken into pieces.  Ross can pick them up with his fingers, but he decided to wet his finger in his mouth, put the wet finger on  the cracker and then put the cracker in his mouth. He used that method to consume all of the pieces. Another reminder that so much of what Ross knew and could do is there, but still disorganized.</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <B><IMG SRC="0c468e00.jpg" border=0 width="360" height="480" ALIGN="RIGHT" HSPACE="10" VSPACE="0"></B></div> <div> <B>October 27, 2008 I just received a lengthy update from Betsy:</B></div> <div> <B> </B><FONT SIZE="3" COLOR="#000066" FACE="Arial" >It does not seem that it has been two weeks since we brought Ross home from his last hospital stay. Not only have we been busy checking discharge instructions, following through on bleach baths twice a week because of a staph colonization acquired during one of his hospital stays, making weekly lab visits because one of the antibiotics for the staph infection interferes with the blood levels of his seizure medication, which in turn messes with his electrolyte levels, and having the sutures removed. Even though we have awesome doctors and a good local lab, I have to follow-up to make sure every loose end is tied. Rusty and I have been exhausted and several times a day I have said to myself, “I am too tired.”</FONT></div> <div> I am sure part of the fatigue is emotional. This has been a very hard year for Ross and for us. The few weeks before this last surgery were terrible because there seemed to be nothing we could do but wait for the shunt repair and we didn’t know how much worse it would get while we waited. When he is having a set back, I tend to panic for a while.</div> <div> Ross’s recovery is amazing and wonderful and he has come so much further than any of the experts believed could happen. He was doing so well a year ago and then he started to loose part of what he had gained in cognitive function, speech, drawing and writing, while at the same time moving forward in gross motor skills. There have been many times in the last two months when my belief that Ross is slowly getting better and better has been challenged. It is interesting that when strangers see him, he looks so healthy and alert that it is hard for them to believe that he still needs someone to do almost everything for him. But then we always make assumptions on the basis of what we see. I had a brief moment with another mother who was in the elevator with her son. He was about eight and in a wheel chair. He looked healthy and happy, but I noticed that as she stood behind him, she gently held his hand with which he was making hitting motions. I realized instantly that he had a brain injury and I said, “My son does that. He has a brain injury.” She smiled and nodded as they exited. That encounter made an impression on me and I told a couple of people about it. I think the recognition that we both deal with the same problem the same way touched me.</div> <div> However, and this is the good news! Ross is doing much better-he is talking more, his drawing is controlled and he is writing. One morning he woke up writing in space with his finger. Jeremiah gave him his easel and paper and he wrote eight pages of cursive in mostly straight lines, and line upon line. We were able to identify a few words. He is obviously thinking and strategizing. He can unscrew the gummy bear bottle himself and dump out the bears. He put some nesting containers back together yesterday. He is eager to have us put on his shoes and to walk (with help). Also, while he was in the hospital and now, he sits carefully and watches the technician draw blood from his left hand. I used to have to hold his right hand, but now he becomes annoyed if I put my hand on his right arm.</div> <div> He still has a temper and tells us exactly what he thinks of whatever we are doing-usually when we are not producing food fast enough or when we remove his plate from the table until he has cleared his mouth. (He likes to take very big bites.) Tonight, I pulled his chair away from the table because he was mad that we were trying to get him to slow down. He was angrily waving his spoon around. I told him he had to sit there until he was ready to stop trying to hit. He was able to pull himself together and smile. The rest of the meal was smoother. Last weekend, he was very agitated so we brought in the blow up plastic dummy made for hitting and kicking. He was reluctant at first, but the he kicked angrily for about five minutes and then he was tired of it and much calmer. I constantly have to remember that we are raising our son a second time, except now he is much larger.</div> <div> As I was brushing his teeth the other night, it became a hassle. Ross was angry at me for persisting, but when I had finished, he laughed and said, “I love you.” He still enjoys watching children. We always see children walking home from school when we go the chiropractor, and Ross now watches them. Occasionally, one will wave to him and that is a treat. We are looking forward to seeing his friends, Jon and Mel, and their children at Christmas. He loves looking at the pictures of the children.</div> <div> So, you see that despite my rough moments about Ross, with the shunt repair accomplished, he is getting back to base line. His motor skills are progressing. For example, last night he turned on to his left side for a while in his sleep. While this is something we do without thinking, it is a big deal for Ross.</div> <div> Thank you for your love and prayers. We could not do this alone.</div> <bR> <div> <B>October 11, 2008: </B><FONT SIZE="3" COLOR="#000066" FACE="Arial" >I finally heard from Betsy today--they didn't get home until 9:00 last night, so it was a long day for everyone, but Ross was really glad to be home and slept through the night. Betsy said that he hadn't slept at all Thursday night, but she sat and talked with him much of the night and it was very special--she said it was like nothing that's happened since he was injured, and it was obvious that Ross was not only connecting, but following and participating in the conversation. Friday morning he was feeding himself breakfast, something that really surprised the nurses.</FONT></div> <div>      He's got a six inch crescent shaped incision across his head, but it's through the skin only. Doctors did not have to go inside his skull, so this should heal quickly. He's on oral antibiotics for awhile, and Betsy said his sodium levels are still off, but that's most likely because of the way his body is metabolizing the Tegritol.</div> <div>      Ross had to have a lot of blood drawn--four times a day for tests--and he often will fight the process, but Betsy said he was very calm and held still for the phlebotomist and actually watched the process.</div> <div>      It sounds as if adjusting the shunt pressure has made a huge difference. I'm looking forward to Betsy's future updates to see how Ross is progressing now that the pressure has been reduced. Thank you all so much for your prayers and healing thoughts. Your generosity and kindness has made such a difference in Ross's continuing recovery.</div> <bR> <div> <B>October 9, 2008 8:30 PM </B><FONT SIZE="3" COLOR="#000099" FACE="Arial" >I just called Betsy and she said that Ross is doing so well that they're convinced the shunt has probably been malfunctioning for months if not years. He'll be going home tomorrow afternoon with a couple of oral antibiotics to take for the staph infection, but everything looks great. Thank you all so much for your prayers and healing thoughts. Your good wishes mean so much to Ross and his family.</FONT></div> <bR> <div> <B>October 8, 2008 8:30 PM I just got a call from Betsy, still at the hospital with Ross:</B></div> <div> <B>     </B>Ross is feeling much, much better tonight, according to his mom. She said the CT scan showed that the ventricle in Ross's brain where the shunt has been placed is much reduced in size since the surgery. Since the shunt has probably been stuck for quite some time, Betsy said it's possible the pressure has been much higher than anyone realized, possibly for many months. She said Ross already seems more comfortable, he's very alert and responsive. A small infection on his leg tested positive for staph, so he's receiving antibiotics to prevent further infection. It looks like they'll be going home on Friday, October 10. Six years ago to the day, Ross was moved from Marin General to Herrick Hospital where he began therapy following his injury, and Betsy's looking at Friday's date as a good sign--it's time to get him back home.</div> <div>      Thank you all so much for your prayers for Ross and his family. You are an amazing source of strength for everyone.</div> <bR> <div> <B>October 7, 2008 9:00 PM: Betsy called earlier but I'm just now able to update:</B></div> <div> <FONT SIZE="3" COLOR="#111111" FACE="Arial" ><B>    </B></FONT><B> </B>Betsy finally spoke with the neurosurgeon. He said Ross's CT scan looks good, though he may have to turn the shunt down even more. He seemed to think the seizures were due to Ross's sensitivity to sedation and the changes in the shunt pressure. He'll need to take antibiotics for the infection on his head and they're going to keep him in the hospital until Friday to make sure all is well before sending him home. I forgot to mention earlier that Ross is at UCSF, Moffet Hospital. Many thanks to everyone for your prayers and healing thoughts. Your kindness means so much to the entire Dillon family, but especially to Ross.</div> <bR> <div> <B>October 7, 2008 2:30 PM: Betsy just called me with an update:</B></div> <div> <FONT SIZE="3" COLOR="#111111" FACE="Times New Roman" ><B>    </B></FONT> Ross was feeling okay last night, though he didn't sleep well at all. Then, this morning, he had three seizures. One was a "grand mal" that lasted ten minutes.  Betsy said they're attributing the seizures to the change in shunt pressure. It was stuck for quite some time before surgery and the pressure was much too high. However, even during the seizures, Ross's pupils were the same size, something they've not seen for quite some time. Also, his gaze is steady and normal with both eyes tracking. They're still waiting to hear from the dermatologist about the infection on his scalp and will definitely be in the hospital another night.</div> <bR> <div> <B>October 6, 2008--6:23 PM: Just heard from Betsy:</B></div> <div>        Ross came through the surgery fine and woke up hungry. Betsy still hasn't talked to the neurosurgeon so she hasn't gotten a report on the condition of the shunt. She did say Ross has another spot on his scalp that they wanted a dermatologist to take a look at, which means he'll probably be one more day in the hospital than previously expected. Hopefully he'll be going home by Wednesday. I'll add more as I hear from Betsy.</div> <bR> <div> <B>October 6, 2008--Ross has his surgery today. Betsy wrote:</B></div> <div>       This is the day and Ross is sweetly awake and he seems to understand that we are going back to the hospital today. We are up really early to give him his essential meds and now maybe we can nap before getting ready for the day. Please pray for us. We have been anticipating having the valve replaced on Ross’s shunt for months and now it is actually going to happen. I will call after Ross is out of post op this afternoon. Bless you all who are Ross’s cheering section.</div> <bR> <div> <B>September 29, 2008--I just received an update from Betsy--now I understand why I haven't heard from her in so long (and I was out of state, so didn't contact her while we were away):</B></div> <div> Ross’s month has been a roller coaster ride. The month started with Ross having a scary grand mal seizure in his sleep at 3:30A.M. This was the first time he had a seizure in the middle of the night. We are grateful that one of us is always sleeping in his room at night. This seizure was part of a troubling pattern we have been watching all year of increasingly more seizures, though less than the two months before the January surgery; more confusion and less speech. As you may remember, the neurosurgeon and we have suspected that the valve on Ross’s ventricle shunt is stuck. The doctor wanted to see if the size of the ventricles was increasing before putting Ross through another surgery. The first post surgery CT in June was inconclusive. The second CT scan on September 8 showed an increase in size. We were not surprised because we have noticed that Ross’s confusion and explosiveness is increasing, and in the last two weeks his vision was worse, the left eye drifting and the left pupil again larger than the right. His hands have become tighter and clinched and he is frequently in pain. We went back to UCSF last Tuesday and they again tried to reset the shunt without success. Ross was very agitated and frightened, but I was proud of how much he tried to cooperate.</div> <div> The surgery to replace the shunt valve is scheduled for Monday. If there are no complications, he will only be there overnight. On last Friday, we were so concerned about Ross’s deteriorating condition that I called UC to see if they could do the procedure this week. We are waiting to see if they can. I also called our wonderful neurologist to ask if the increased intracranial pressure (ICP) could cause permanent damage to Ross’s brain. His answer was that probably it would take longer than a few months to cause irreversible damage. I also asked if there was anything we could do to provide some comfort for Ross while we wait. He suggested an herb that had been the topic of a lecture he had just presented, Huperzine. I bought a bottle and we started giving it to Ross on Friday night. On Sunday, he was feeling better and we didn’t see any indications of the Absence Seizures he had been having. Today he was even better; Letha, the OT said that it was his best session in a long time.</div> <div> He started with walking on his knees with only bearing down through his arms to hold their (Letha and assistant) hands; visualize walking with a walker. He walked very fast, and moved both the left leg and the right without help. Later he walked outside (standing), again with support on both sides. He is now taking big steps with his right foot and independent sliding through steps with the left. I brought his old manual chair out for him to sit in. When he was seated, he started to travel using his feet to move him along. He would bring his right foot forward to more the chair, then put the right foot back next to the left foot and bring both feet forward together, and then repeat the process. When he came inside, he moved to the table, reached out and grabbed the edge in order to pull himself forward. When he encountered a table leg, he used his right foot to move the left foot to the left of the table leg, and then put his right foot on the other side and moved his chair to the edge of the table. Once again, he is showing us that he is thinking and planning, even though he can not yet talk about it.</div> <div> He is definitely feeling better; if we have to wait until next week for the surgery, at least he is more comfortable and less vulnerable to another Grand Mal. It is definitely scary when I can’t remember how many seizures he has had in ten days without checking my notes. However, I am reminded of my mother saying when I was a girl, “It is always darkest before the dawn.” Thank you for your prayers.</div> <bR> <div> <B>August 31, 2008--I just heard from Betsy:</B></div> <div> Well, something has clicked for Ross. I don’t know if it is because three months post surgery is an important interval, or the new herbal supplement the neurologist prescribed is kicking in, or if it is the extra niacinamide I started giving him after learning that it helps with balance and is an excellent antioxidant. Or then, maybe it is all of them or none of the above. Ross is much happier: he smiles more, he is laughing again, he is moving his shoulders in that wonderful way he has, alternately lifting each shoulder as he smiles and rolls his head. He is also talking again. Twice in the last week, he has said, “I am happy.” He also, told Rusty and me at separate times, “I love you.” This afternoon, he was happily eating his afternoon snack and smiling. He said, “I am always hungry! “ And he also asked me, “Are you my mother?” We haven’t heard this level of speech since before the last surgery. As I read over the entries from last year, I realize his speech was so much more advanced before the first surgery in January and we are thrilled to see the positive changes.. </div> <div> He is also continuing to kick the ball with his left foot. Last week, he kicked forty times in one sequence. Two days ago, we had him kicking. As I was watching him, I was aware of the effort required to send the message to his left foot. We could see him trying to remember how to do it. It is so easy to forget how hard it is for him to do things that we take for granted. Later, I tried a cognitive exercise with him. It involved identifying matching two of four letters on a page. It took a while, but he finally did it. When I gave him another page, he was distracted and looked at the page without comprehension. I didn’t give up, but walked away for a while and then returned, quietly asking him again. After ten or fifteen minutes, he finally accomplished it and, for me it was a demonstration of something I have been learning. In watching him, it seemed that he was so agitated that he couldn’t process the information in front of him. As we calmly spoke to him, walked away, came back, gently encouraging without pushing, he was able to calm down and look at the letters. </div> <div> Rusty and I have been reading about neurofeedback and its use in helping people with brain injuries. The injured brain, at least from this perspective, has brain waves that are not normal. For example, low frequency, high amplitude (voltage) brain waves can destabilize the brain and trigger a seizure. One writer has likened this to the conductor of a symphony being incapacitated and the chaotic music that ensues. We became interested in neurofeedback after two families told us that their brain injured sons have been helped by neurotherapy. If anyone is interested, a good introduction is <A HREF="http://www.amazon.com/Symphony-Brain-Evolution-Wave-Biofeedback/dp/0802143814/ref=sr_1_1?ie=UTF8&s=books&qid=1220229294&sr=1-1" TARGET="_top" TITLE="http://www.amazon.com/Symphony-Brain-Evo"><U><I><B>A Symphony in the</B></I></U></A><A HREF="http://www.amazon.com/Symphony-Brain-Evolution-Wave-Biofeedback/dp/0802143814/ref=sr_1_1?ie=UTF8&s=books&qid=1220229294&sr=1-1" TARGET="_top" TITLE="http://www.amazon.com/Symphony-Brain-Evo"><U><B> </B></U></A><A HREF="http://www.amazon.com/Symphony-Brain-Evolution-Wave-Biofeedback/dp/0802143814/ref=sr_1_1?ie=UTF8&s=books&qid=1220229294&sr=1-1" TARGET="_top" TITLE="http://www.amazon.com/Symphony-Brain-Evo"><U><I><B>Brain</B></I></U></A><A HREF="http://www.amazon.com/Symphony-Brain-Evolution-Wave-Biofeedback/dp/0802143814/ref=sr_1_1?ie=UTF8&s=books&qid=1220229294&sr=1-1" TARGET="_top" TITLE="http://www.amazon.com/Symphony-Brain-Evo"><U><B> </B></U></A>by <B>Jim Robbins</B>. We are exploring the possibility of this therapy for Ross. Certainly, just reading about it is helping us to understand day to day life with Ross.</div> <div> We had an interesting experience at the chiropractors this week. A man introduced himself to Ross. I told him Ross’s name and started to tell him how Ross was injured. Ross quickly turned to me and said, “Oh, Mom, don’t tell that story now.” Times like this encourage me.</div> <div> Ross’s thirty-second birthday is a week away. We will celebrate with a family dinner and birthday cake. We hope to be able to post a video/slide show on the internet soon. We will let you know when it is up. Thank you for your prayers and support. Onward and upward!</div> <bR> <div> <B>August 11, 2008--a note from Betsy:</B></div> <div> Just a quick note since it has been a while. As usual, we have been extremely busy. I wrote in my log on July 31 that Ross has been so tired, particularly after PT on Tuesday and Wednesday. His therapists were pleased with his progress, but his fatigue was scary. A cognitive training program that I have been interested in was on sale and I took advantage of the lower price and ordered it. That evening, I sat with Ross at the computer to show him a video of another young man with a TBI who has made great progress and used the program. Ross sat with his head down, not looking. As the video played, I talked to him and said he could learn to do these things. He shook his head for “No!” I kept talking, and he finally looked up and started watching. He even smiled as I talked about him doing it and then lifted his shoulders alternately, something he does to show enthusiasm.</div> <div> In talking to Rusty, we realized that with the stress of the last six months, we mainly stay home and do lots of therapy. He is doing extremely well with gross motor skills but he had regressed in cognitive work. Realizing that he was bored and resigned to his fate, I decided to add in more fun. The next day we had lunch at Murphy’s Irish Pub, where Ross had worked for a while. He had a wonderful time, eating, gesturing and calling out to other people. </div> <div> Now, two weeks later, he is doing much better, except for the first grand mal in almost two months last Tuesday. However, he is smiling, drawing intricate pictures again, writing and enjoying the Olympics.</div> <bR> <div> <B>July 27, 2008 A note from Betsy: </B></div> <div> <B> </B><FONT SIZE="3" COLOR="#000099" FACE="Arial" >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.</FONT></div> <div> 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.</div> <div> 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? “ </div> <div> 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.</div> <div> 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<FONT SIZE="3" COLOR="#000000" FACE="Arial" >!</FONT></div> <bR> <div> <B>    </B></div> <div> <B>July 11, 2008 An update from Ross's mom:</B></div> <div> 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. </div> <div> 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 <I>Enzymes for Digestive Health and Nutritional Wealth. </I>Her web site is<I> </I><A HREF="http://www.enzymestuff.com" TARGET="_top" TITLE="http://www.enzymestuff.com"><U><U>www.enzymestuff.com</U></U></A> . I am realizing how critical enzymes and the digestive system are for all of us, but even more so for the neurologically challenged. </div> <div> 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 20<FONT SIZE="1" COLOR="#0000CC" FACE="Arial" >th</FONT> 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.</div> <bR> <div> <B>June 15, 2008 (I'm posting this from Montana--just received an email from Betsy with an update. Wifi is EVERYWHERE!)</B></div> <div>     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</div> <div> 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</div> <div> 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.  </div> <div>     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</div> <div> and looked at me as if to say, "Isn't this outrageous."  It is so wonderful to have his laughter back.</div> <div>     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,</div> <div> 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</div> <div> thinking girl, but woman is what came out of his mouth.</div> <div>     His speech skills have been better until last Wednesday when he had another grand mal seizure.  This time, articulate speech is slower to return.</div> <div> 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</div> <div> 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</div> <div> 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</div> <div> 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</div> <div> 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</div> <div> neurosurgeons determine what is going on.</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <A HREF="id9.htm" TARGET="_top" TITLE="Updates to May 30, 2008"><U><B>Updates prior to June 2008</B></U></A></div> <bR> <div> <A HREF="http://www.rossdillon.com" TARGET="_top" TITLE="http://www.rossdillon.com"><U><B>History of Ross's accident and first years of care.</B></U></A></div> <bR> <div> <B>                                                                        </B></div> <DIV ALIGN="LEFT"></DIV> <div>   <div align="center"> <a href="http://pub14.bravenet.com/guestbook/1184559207/"> <img src="http://assets.bravenet.com/cp/guestbook.gif" border="0" title="Sign my Guestbook from Bravenet.com" alt="Sign my Guestbook from Bravenet.com" /></a> <a href="http://www.bravenet.com"><img src="http://assets.bravenet.com/cp/bn-guestbook.gif" border="0" title="Get your Free Guestbook from Bravenet.com" alt="Get your Free Guestbook from Bravenet.com" /></a> </div>   </div> <div> <B>  <div align="center"> <div style="width:128px;padding:2px;border:1px solid #cccccc;background-color:#f9f9f9;color:#000000;font:bold 11px verdana;"> Visitors:  <script language="JavaScript" type="text/javascript" src="http://pub14.bravenet.com/counter/code.php?id=369044&usernum=1184559207&groupnum=14&cpv=2"></script>  </div></div>  </B></div> <div> <B> <script src="http://www.google-analytics.com/urchin.js" type="text/javascript"> </script> <script type="text/javascript"> _uacct = "UA-1363680-1"; urchinTracker(); </script>  </B></div> <bR> <div> © Kate Moore 2008</div> <div> <A HREF="mailto:kate@katedouglas.com" TARGET="_top" TITLE="mailto:kate@katedouglas.com"><U>kate@katedouglas.com</U></A></div> <bR> </td> </tr></table></body>