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="index.htm" TARGET="_top" TITLE="Current updates"><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@hughes.net" TARGET="_top" TITLE="mailto:charlesdillon@hughes.net"><U><B>CharlesDillon@hughes.net</B></U></A></div> <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><A HREF="http://www.rossdillon.com" TARGET="_top" TITLE="http://www.rossdillon.com"><U><I><B>www.rossdillon.com.</B></I></U></A><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> <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>