April 28, 2012 Betsy apologized for the late update--she's been dealing with headcolds and life--but it's all good news:

Ross is well. He was sick with a cold earlier in the month, but thankfully it did not become worse. The next week he seemed on the edge of partial seizures, but he didn’t seize, thanks to his stronger brain and proprioceptive calming effect of the weighted blanket, his beanie hat, his oral rubber P.

We are delighted with his progress. He has become much more communicative, and more and more speaks in short sentences. Sometimes he refuses to eat the green puree with his supplements. It seems to us that he needs the opportunity to say, “No!”  He has been holding one of Ariel’s old baby dolls. We are practicing for Ariel’s baby who is due in June. Ross has a vey loving relationship with the doll, and moves the doll from lying in the crook of his arm, to his chest and holds it with both hands. This is a good example of how we all, especially children, develop more dexterity in the process of daily activity.

We have Ross standing in his power chair for twenty to thirty minutes twice a day. He does puzzles and other activities during this time. As a result his stamina is increasing. A few days ago, for the first time in quite a while, he pedaled on the exercise bike for an hour. He was watching one of Lance Armstrong’s Tour de France videos, and he matched his cadence with the video, going fast and then slowing down with the video.

He is talking more conversationally. There are times when we can’t understand his word, but most of the time we can understand what he wants. He also is playing word games. A couple of days ago, he was saying, “I love my mother” – “Yes”; “I hate my mother” - “No” over and over.

We also play kickball with him and have him kick the ball through the goal, between two chairs.

Yesterday, he did not want to pull himself to standing using the transfer pole. Jeremiah pretended to be trying to pull himself up. Jeremiah was pretending to be weak. Ross reached over and touched Jeremiah’s leg as if to cue him, and started saying, “Do it! Do it!” Finally, in frustration, Ross reached out and grabbed the pole, and pulled himself up to standing.

We are very blessed that Ross is with us, and that he is steadily improving. Onward and upward!

March 6, 2012 Betsy wanted to share this:
I thought I would share a sweet thing Ross said last night. We were all watching the news. During a commercial break, Rusty and I were standing in front of the refrigerator hoping dinner would materialize. Ross looked at Jeremiah, then at us, and said, “Brother, they are my parents.”

March 4, 2012 Betsy's latest update:
I actually wrote this about a week ago. I was flying along, wrote out the update in long hand to type up the next day. The problem was that I woke up the next morning very sick.  I am now recovering, and thankfully Ross seems to have escaped what Rusty and I had.

We are enjoying being with Ross these days. He is reading more now. Simpler books like Green Eggs and Ham, he read aloud. We understand the words at the beginning, but then we have a harder time as he progresses through the book. Letha, the OT, has watched his eyes move from left to right, down the page. I was looking at the d’Aulaire book about Pocahontas with Ross. He turned to the inside flap and silently read the description of the book. Letha pointed out to me that now when Ross turns several pages together, he stops and goes back to turn each page singly. This week he read two sentences our loud from a Dr Seuss book with perfect diction.

We discovered a new game as we were rearranging our puzzles and games. This is a foam board with pegs of different colors. Ross puts the pegs in the holes by himself. He quickly progressed from inserting the pegs randomly, to carefully inserting them by color. Picking up the pegs and seating them requires more dexterity. In just a couple of weeks, Ross went from fumbling them into the holes and hitting them. Now he is using three fingers to firmly seat the peg in the hole, then moving on. He is inserting by color now, and occasionally he branches out into sky scrapers by stacking them.

We also uncovered a wooden United States map puzzle that I purchased for the children over twenty-five years ago. Ross and Jeremiah work this puzzle almost everyday. The name of the state is on the back of the piece and on the board where the piece goes. Jeremiah usually starts with Texas and Ross puts it in the correct spot; Jeremiah then finds another state close by, and Ross put it in place. The other day, Ross picked up a piece, and Jeremiah said, “That’s Montana; let’s do it later.”  Ross insisted on putting it in place, and I watched him immediately place it at the top of the puzzle where it belonged.

A few days ago, Rusty and Ross were seated at the table and playing the tambourine. Ross was singing, and Rusty was rhythmically hitting the tambourine. He encouraged Ross to use his spoon as a drum stick. Amazingly, Ross starting hitting the instrument with a very definite and intricate beat.   Ross has continued to enjoy “drumming”.

We still see what appears to be kindling partial seizures, but Ross’s brain has become stronger, and the use of the photon stimulator, the weighted blanket, and chewing on the P enable him to calm his brain. Of course, we are delighted. Rocking in his recliner helps him to calm himself, and he will even rock in his wheel chair when he is agitated. We still see outbursts of anger and fear, but we have discovered if we turn our backs on him at these times, it seems to break the cycle. He usually smiles and the rain cloud is gone.

Yesterday at dinner, he was confused, frightened and flailing. Our words didn’t calm him, so I pulled his chair away from the table, with him facing away. I said for him to let us know when he was ready to eat. In less than five minutes, he was smiling, released the brakes on his chair, and happily returned to the table and his food.

I mention this because I think Rusty and I, as well as the OT and Jeremiah, are beginning to understand what may be a partial explanation. As Ross continues to get better and do new things, both motor and cognitive, it means neurons are doing their work, his brain is more active, and this can possibly kindle a beginning seizure. As Ross becomes stronger and we try to control for other triggers, like not enough sleep, illness, allergies, tiredness  and stress, his brain is also able to stop the spread of an out of control kindling.  When Ross explodes, if it is as we think, his brain is maybe experiencing an outburst; when we use humor, verbal or non verbal, maybe we are helping him switch channels.  This would not work, I think, if his brain was not stronger. All hypothetical; trying to understand! But the good news is Ross is getting better, day by day. Often two steps forward, one step back, than forward again. And that can be good news for other survivors of brain injury. Onward and upward!  

January 28, 2012 Just received an update from Betsy:
Our whole household has had bad colds since Christmas. When Ross is sick, it means he is more likely to have a seizure. Thus, I take his temperature all through the day, not just in the morning. We check his pulse when he starts to look “funny”.  I can’t explain what “funny” is, since we are hyper alert at these times; maybe he is merely looking strained, preoccupied, or very tired. If he is not exercising, singing or yelling, a high pulse may be a central nervous system issue. Thankfully, Ross can also tell me. Sometimes, he complains, “My brain, my brain.” Or, he may say, “It is painful.” Almost always, if I ask him if his head is bothering him, he will give me a nonverbal response. Almost always, the weighted blanket and the grabber to chew help him to feel better. We also are finding that the use of the photon stimulator any time that he is having trouble helps to calm him.

Lately, Ross has surprised and pleased us with more refined speech. One day, his throat was sore and he was very congested. Jeremiah offered to spray his nose (we use a gentle saline solution), and Ross said, “It is not my nose, it is my neck.” He then reached out and touched Jeremiah’s neck to demonstrate where he meant.

One day, he woke up very congested and I offered to spray his nose. Ross said, “It is not a nose problem, it is an ear problem.” I warmed a towel to put on his ear.  After a few minutes, he did not want the warmth and started to remove it. He then said to me, “It is not a nose problem, it is not an ear problem, it is a head problem.”

Indeed, he has been talking about his head and, sometimes, his brain. He even asked me a couple of days ago if I had a brain in my head. Another time, I wanted to use the photon stimulator on his head and he said, “I don’t have feeling in my head, I just want food.”  So, I surmise that he realizes that he has a brain injury, and I expect that as his speech improves, that I will learn what he thinks it means. Jeremiah told me the other day, that Ross had awakened from a nap and said, “The last nineteen years have been so painful.” I wonder if “nineteen” just came to mind, or did he realize it has been almost ten years. These are things I really want to talk about with him. Definitely, Ross does feel pain, fear and confusion. He seems to comprehend when I explain that he got bad “head bonk”, or a “brain injury” when he was hit by a car and that causes him to be confused, and also to not remember some things.  Almost every day, he asks me, “What is your name?” He also asks me several times a day if I am Ariel. He also asks me how old I am. He frequently asks Jeremiah what his name is and how old he is.

One day recently when he was watching me cook, I gave him a spoon with coconut oil on it (it has the consistency  of butter). Ross asked me, “Do you eat butter?” I don’t know if he thought it was butter, or if he wondered why this white stuff did not taste like it. After dinner the other night, I asked him if he wanted to go back to his room or stay in the living room. It took him a while to respond, and then he pointed to his recliner, and said, “I want that.”  

Also, he is now putting numbered cards in order by himself. A few nights ago, I opened up a box of Skip Jack cards, and he started by stacking three 6 cards on top of each other. I then pulled out a 5 card and he put it to the left of the 6. He eventually put 1-8 on his placemat in order, and then when I showed him the 9 he put it above the 8. As we uncovered 10-12, he put them in order, going to the left. So he had put them in the following pattern (all on his own).

              12 11 10 9
1  2  3  4  5  6  7  8

One last story, he still has occasional explosive outbursts. We have come to think of these outbursts as seizure like events. They end quickly, and he frequently smiles or laughs afterward. One evening after an outburst, he turned to me and clearly said, “I would never hurt you.”

Onward and upward in this journey!

December 23, 2011 Betsy just sent me a video link of Ross in action.

December 12, 2011 An update from Betsy:
The attached picture was taken at the dinner table on Thanksgiving. Ross was much calmer and interactive at dinner than he has been in the last ten years. (It seems strange that we are in our tenth year post injury. It has been so long, and yet the time has flown by.) Ross came to the table, sat looking around, then picked up his fork and served himself turkey from the platter in front of his plate. As usual, he ate a lot and then we gave him his pumpkin pie early so that Jeremiah could take Ross back to his room. Jeremiah and I, as always, worked together cutting food, putting it on Ross’s plate, and making sure that he didn’t choke from putting too much food in his mouth at once. About an hour later I heard a soft sound in his room and went to check. Our lovely and accomplished God daughter, Katie, was curled up on the window seat and playing the violin for Ross. I heard Ross say several times, “Beautiful, beautiful!”

Ross’s strength is coming back in his legs. Jeremiah has been working with Ross to again be able to pull himself up to standing with the transfer bar. Ross has not been able to do that since his hospital stay in June. About ten days ago, Jeremiah was working with Ross, and he was pretending that he was having trouble himself. Jeremiah was grunting and grimacing as he apparently tried to pull himself to standing. Ross did two things; he patted Jeremiah’s left leg as the therapists have done with Ross, reminding him to straighten his leg, and then Ross said to Jeremiah, “Be a man.” Ross then pulled himself up for the first time in almost five months.

One night, Ross was lying in bed after dinner and before his shower. Jeremiah had taken Ross’s shoes off. Ross was motioning toward his feet, and I assumed he wanted weight on his feet, and piled blankets and pillows on them. Ross finally said, “Shoes on feet. I want to walk.” We use the weighted blankets, his beanie on his head, and the hard rubber P that he chews all through the day, in addition to the Photon Stimulator to calm him. One day Jeremiah took him to his bed to rest and Ross said,”Covers, covers. My brain, my brain.” We are so happy that Ross is able to know what he needs, and to tell us. Also, Ross is reading more these days, and when I showed him a letter that I received, he started reading it out loud.

We had a group from church to sing Christmas Carols on Saturday. Ross was singing joyfully, and particularly loved one song with a Latin refrain. Ross studied Latin for four years, and as we sang he pointed to the Latin words. Then, Ross became very quiet, and I realized he was on the edge of a seizure. We hurried him to bed, and he did have his first seizure since the end of June. It was very mild, compared to what we are used to. When he woke up, he was laughing. Yesterday, I was worried because he was frequently angry at me, and he would say, “I am a man.” “You are a girl.” I was trying to give him a pill in applesauce; after the first spoonful, he refused to take any more from me, but he did let Rusty feed him. Today though is a new day and he is very sweet with me and giving me kisses.

He only slept four hours last night, but in his therapy work with Letha today he showed huge progress. Once again, it seems that the seizure was a resetting mechanism. We are truly blessed.

Thank you all for your love and support. I will write sooner next time, even if it is a one liner. I hope you all had a wonderful Thanksgiving, and that the rest of this month, as busy as it can be, is a time of peace and love for all of you.

October 31, 2011 An update from Betsy:
Life is good when the positives outnumber the negatives. We had another mini crisis last night (I sure don’t want this to become a weekly event). Around 9:30 P.M. Ross started coughing. It probably started because of a combination of heavy post nasal drip (one of the side effects of living in this beautiful environment) and letting a little bit of the puree that contained his meds go the wrong way. His coughing started a spasm that continued for about ninety minutes.  We helped him sit vertically (at a ninety degree angle) in bed, and did what we could do to make him comfortable. Slowly he was able to breathe more easily, with frequent hiccupping, than occasional coughs.

The amazing part of this story is that Ross told us verbally what to do combined with some body language. He said, “My nose” and turned each nostril to me to spray. He also repeatedly blew his nose into the tissue that I held. He asked for water, he asked for food. When he quieted enough to safely give him spoon amounts of water, he drank about three ounces. Then I gave him tiny bits of honey, for the energy and also to coat his throat. He also motioned toward his sandals and Rusty put them on. This really made his feet more comfortable because his seated position meant his feet were pressed on the foot of the bed. He kept gesturing toward the blankets and I realized he wanted the weighted blankets. Then I asked him if he wanted the beanie and he nodded yes. When I offered him more water, he said, “is that water?’”  After another three ounces of water by spoon, we repositioned him in a reclining position, and gave him his oral grabber to chew on. I turned on the stereo with the music that I used in the early days to help him fall asleep. Now, I use it to provide a calm environment. Almost immediately, he turned his head to the side and fell asleep.

He slept well last night, but was very tired this morning. Letha, the OT suggested that we postpone his therapy to later in the week and we agreed. He is doing so well and his speech is much better. A friend in the LENS community has introduced us to a program that helps people retrieve speech. Rusty is learning about it, and we will let you know about it as we start to use it with Ross. Thanks for your love and support. Onward and upward!

October 23, 2011 A new update from Betsy:
Ross is much better since I last wrote. We are still decreasing the Depacote that was affecting his liver. The process is 75% completed, and we are doing it very slowly. Ross is so sensitive to the antiseizure medication that each dosage change makes him confused, restless and feeling bad. He is talking more and is certainly more interactive, even teasing. He and Rusty watched a television program about dogs last week. Rusty asked Ross if he liked one of the dogs. Ross said, “Father, do you like that dog? Do you want him? I want a dog.”  Then this week, when we went UCSF to see the doctor, Ross spotted a cute little red car parked next to us. He was very intrigued, and excitedly pointed to it. He said, “I want that car.”  Even after we had his wheel chair in the van, he was pointing to it. He clearly wanted to ride in the little red car. It was so like Ross who has always liked cars. In fact, the incident with the dog was also like “the good old days”. It is very poignant; but Ross is definitely making progress. Another day, when we were in the car, Ross started pointing toward the front and urgently demanding something. I wasn’t successful in figuring it out, and then with frustration, he said, “arm”. I looked down and his left foot had slipped off the foot rest and he couldn’t move it back. Of course “arm” was not the correct word, but it was close. It was such a good example of increasingly being able to retrieve words, and, of course, almost getting it.

Ross is still not quite back to baseline in walking and standing, but he is so much stronger than he was three weeks ago. He is also more independent – he moves around in his walking chair, going from his room to the family room, and working simple puzzles by himself. He can not be unsupervised though. Yesterday, in a confused moment he started to stuff his mouth with puzzle pieces. Thankfully, we were able to get them out of his mouth, but it was a reminder that we can never assume anything. It has been many months since he tried to put anything other than food in his mouth.

Sometimes it is so sad to think about what he has lost, but we are truly blessed that he is always making big gains. Onward and upward!

October 3, 2011 A note from Betsy:
I am so late in writing you. I had “do the update” on my list all last week.   There are so many details to take care of these days.  l have been stressed to the max. Ross was increasingly weak for about ten days; his temperature and blood pressure were very low. This meant more lab visits and e-mail communication with Ross’s neurologist. We have ruled out infection, and his liver labs are looking much better since we have been steadily decreasing the Depacote. We have come to the conclusion that the medication changes are the problem, and we have increased the days between medication changes. Because of his weakness, dizziness and confusion his therapists cut short all of his therapy sessions last week. Yesterday, he had the first full length therapy session in over a week. He opened his seat belt without help. When he got out of bed he did a great job, but he needed a lot of support once he was standing because his legs are still so weak.

In spite of the weakness, his speech and cognition are greatly improved. One day after I kissed him, he said, “You are a gift to me.”  Of course, his saying it was a gift to me. He is talking a lot during the intervals between alertness and extreme fatigue. Right now I can hear him giving us a running commentary on his relationship with the world. “Beware, don’t hurt me. I am the king of America.” and other important cautions. He once again is playing games with his voice, and sticking out his tongue. One day, he counted to 48.

He is also letting us know when he doesn’t feel well, and asking for what he needs. For example, most of his discomfort appears to be related to neurological sensitivity. Thanks to the occupational therapist teaching us about proprioception, he can choose to have us brush his head with a soft brush, put a snug beanie on his head, or use the Photon Stimulator on his fingers and toes. He can also chew on his rubber Grabber and have the weighted blankets.  All of these help to calm his central nervous system. There have been times lately when he directed us to layer all the blankets on him. He also knows when he doesn’t need it and he directs us to remove the blankets or hat. One day, Jeremiah watched Ross remove all the covers that he had wanted an hour before, one by one. He reached across his body to the left, used his right hand to pick up the corner of the blanket, and brought each blanket over to his left side until he was uncovered. Sometime later, he reached over to the left, took the corner of the sheet and pulled it into place over him.

Thank you so much for your love and support.   We are blessed.

Betsy

August 29, 2011 Just a quick note from Betsy:
Ross is getting better all the time. We have been able to taper some medication. He still doesn’t have the strength and stamina he had before he went to the hospital. I think it is probably medication related. I am taking him to the Epilepsy Clinic for our first appointment this week. I hope that we will be able reduce the new medication or come up with a better one. He is much calmer now which suggest that some of those angry outbursts were seizure related. I think it has been so hard to see the forest (the whole picture) because we saw only the trees (each seizure or outburst).  I have found some books about epilepsy that confirm how much seizures are triggered by small assaults (too little sleep, an infection, allergies, too much heat, good stress, bad stress, on and on) on a fragile, hurt brain. Ross’s speech has increased. He is telling us what he wants more now in contrast to using nonverbal communication or expecting us to read his mind. For example, he said to me last week, “I love you. I want to kiss you.” Usually he would pucker his lips or say “kiss”. I will try to send an update later this week. We will be celebrating Ross’s birthday this weekend since his birthday is next week. Onward and upward!

August 3, 2011 A really positive update from Betsy:
I am so happy to be able to write with very good news. Ross is doing great. Cognitively, he is coming back from this last emergency with more understanding and more conversational speech. While still weak, he is much stronger than he was when we brought him home a month ago. He is not walking yet, but he is walking some in his wheel chair. He has started to feed himself again. He is joyfully playing games, sticking out his tongue, singing, and kicking a ball. Yesterday, when Jeremiah was rolling the ball for Ross, Ross kicked it 220 times until we decided we should stop.
We had a meeting with a new neurologist two weeks ago. (Our beloved neurologist has decided to retire.) The new doctor has given us a protocol for tapering the sedatives, and reduced the dosage of the new antiseizure medication. These medication changes have clearly made a difference, since we see positive changes in Ross.
In conclusion, I share some Ross quotes.  Rusty went into the bath while was having a shower. Ross said, “Dad, get out of the room.”  He is fond of telling me to “Go home.” when I go into his room while he is watching television. A few days ago, Ross and I were watching a family game show on TV. The object was to supply the correct word based on clues. Ross was watching very carefully, and after one answer he said, “That’s good.”  On another day, Ross coughed because of nasal congestion. He said to me, “Sit up.” I helped him to sit straighter, and then asked if I could spray his nostrils with saline solution. For the first time ever, he asked, “What is it for?” After I told, him he nodded for me to go ahead.  When I stopped, he wanted me to continue and said, “Now!” We are delighted and grateful; Ross continues to amaze us as he faces the adversities of life, and continues to make progress. I am reminded of the seizure specialist we saw last year telling me, “You know that [Ross’s story] is atypical.”  Thank you everyone for your prayers and loving support

July 10, 2011 Received an update from Betsy--she must have known I was getting anxious for some news!
As Rusty reported, we gratefully brought Ross home on Wednesday, June 29, two weeks after he was admitted to the University of California San Francisco Medical Center. No one knows why he started having constant partial seizures (Status Epilepticus). We knew that he was having many absence seizures. Our thought was that maybe his ventricular shunt was malfunctioning.  The turning point was when a neurology resident came to examine Ross and take a history. Thankfully, she decided to do a long term EEG. A staff person from the Epilepsy group came in and with great patience, because Ross was in pain and frequently rolling onto his left side, she was able to place all twenty-two sensors on his scalp. Finally, around midnight, the sensors were all in place and connected to a monitor, and a video camera was tracking Ross visually. Exhausted, I dozed off. I kept waking to check on Ross, but was sleeping at 3 AM when one of the doctors came in, announced that Ross was having constant seizures, and they were immediately moving him to ICU. Apparently some of the seizures were so subtle that they could only be positively identified by way of the EEG record.  Once in ICU, they started giving him a total of five different antiseizure meds (he had been taking two of them). He also was taken to have a CT scan of his brain and an x-ray of the shunt. Both tests revealed nothing wrong, and the good news that the ventricles were smaller than they had been two years ago.  
When the antiseizure medications failed to completely stop the seizing, the doctors then put him under heavy sedation. This required Ross being on a ventilator, and being monitored constantly in order to maintain proper blood pressure. The first chest x-ray was not bad, but subsequent x-rays showed pneumonia. The doctors put Ross on antibiotics for the pneumonia. After four days under anesthesia, Ross was declared free of seizures. He was exhausted, and definitely not at base line (his level of functioning before being sick). He was cleared for eating pureed food on Sunday the 26th. He had been tube fed for the previous week. While the formula was necessary, it is not the same as what we call real food. We were elated, and thought we might go home on Tuesday. On Monday afternoon, Ross had two grand mal seizures about three hours apart. The epilepsy team put the EEG sensors on again-they had just removed the previous ones a couple of days before. The next day, Tuesday was the hardest day of many hard days for me because Ross would not eat anything; would not even open his mouth. He didn’t even seem to see me. I kept gently coaxing him without any success. I was so scared. That night I heard Ross say, “My name is Ross Dillon.”  The next morning he began to accept small sips of water from a spoon, and small tastes of apple sauce. At mid day, the doctors said they thought we could take care of him at home, and that home is a better environment than the hospital. I think all of us, family, doctors and nurses were happy.
Ross is still heavily sedated because the neurology team thought it necessary to continue for a couple of weeks. We hope to get the okay to slowly taper it this week. Ross is on three antiseizure meds, the new one Valproic Acid, while being effective, can affect Ross’s liver. So, he will have weekly blood draws and hopefully a different antiseizure medication later.
Now at home, Ross is eating again. We are pureeing everything, grinding the supplements that he usually swallows, and carefully easing him back to normal physical exercise. Just sitting in the edge of the bed for five minutes is tiring. Transfers are more difficult. But he is talking again: he asks for food, and lets us know through words and gestures what he wants.
One of the neurologists said when he met me, “Oh, you recognize seizures.”  I appreciated his comment because there are times when I am not sure of my hunches. Our decision to have Ross admitted to the hospital was based on feeling that something was wrong, even though we didn’t know exactly what it was. Thankfully, the doctors accepted our concern, and the EEG confirmed it. When the people under our care can not tell us what they are experiencing, we have to rely on common sense and intuition.
Thank you all for your prayers and support.
Onward and upward!

June 30, 2011 Just got an email from Rusty and I'm posting it here for all:
Dear Folk,
    Ross looked so good today (after lousy yesterday) with very few tiny seizures and clean labs, the various docs (15 at least) corporately said we should get out hospital’s harms way (infections etc.) and go home to see how he continues to recover from there.
   We scrambled and we’re home. And glad and relieved. No definitive diagnosis but they identified a very serious brain storm (that was hidden from view) and stopped it.
   Seems like 4 days of general anesthesia would stop almost anything.
   Praise God and we’re so grateful.
   Ross is exhausted and so are we. Lots of building back up to do … very very gently.
   Thank you again for support and prayer.
Blessings
CRD+

June 30, 2011 Call from Betsy:
I just heard from Betsy, and she's taking Ross home. They've gotten the seizures under control with a third seizure medication--he won't be completely seizure free, but at least he's okay to go home, and after so long away I know they're both more than ready. I will update more once they're back home and settled, and I have a chance to get more details from Betsy. Thank you all so much for your healing thoughts and prayers for Ross.

June 28, 2011 Received a message from Betsy this evening:
My apologies for not getting this posted sooner--I'm in NY on business, but had a message from Betsy today that Ross is still at UCSF Hospital. They were hoping to be headed home by now, but he had two gran mal seizures last night. The meds to control the seizures have left him really sleepy, and Betsy said he's not had much of an appetitite today, which is unusual. She did ask for your prayers for Ross--they still don't know what is causing the seizures, and at this point she doubts they'll be going home before Thursday, if not later. I'll try and get more details from Betsy tomorrow, but please hold the good thought for Ross and his family.

June 24, 2011 Got a really positive call from Betsy today:
Doctors have removed Ross's breathing tube, along with all the eloctrodes that were stuck all over his scalp. He's not seizing, and while he's pretty groggy from the sedatives that are still working out of his sytem, he's definitely coming around. He's not talking yet, though he's smiling, and doing well with the respiratory therapy. He's getting RT every four hours to help him deal with the congestion.

He's off all sedation, still on some of the anti-seizure meds, but not ready to go home yet. Betsy said the doctors have been very attentive and he's getting excelent care, but he probably won't be able to return home until some time next week.

June 21, 2011 noon just a quick call from Betsy, still at UCSF Hospital:
Ross is not seizing, though he is still sedated. Doctors are slowly tapering off on the anti-seizure drugs, and Betsy said Ross is waking up slowly. He is showing some signs of pneumonia, but he's on antibiotics, and they're still hopeful of being able to take him home by Friday. Please keep Ross and his family in your thoughts and prayers. It's been a tough week for all of them.

June 19, 2011 5:30 p.m. Betsy just checked in:
Betsy called a bit ago to say that Ross is still heavily sedated, but he's gone a full twenty-four hours now without a seizure. Doctors are going to keep him under sedation and begin withdrawing the antiseizure meds, but they'll do it quite slowly. First they want his brain to essentially flat line with the sedation so that it is totally at rest before bringing him back. As Betsy was describing the procedure, I realized that what they're doing is the same principle we use to reboot a computer. Please keep Ross in your thoughts and prayers, and his parents as well. Betsy is staying in San Francisco with friends who live near the hospital, but she's hoping they'll be through this latest crisis and home by the weekend.

June 18, 9:45 a.m. Another call from Betsy:
Betsy just called me from the hosptial after speaking with the neurology team and the neurosurgeon. They've got Ross heavily sedated, but the seizures are finally under control. The plan now is to keep him sedated for awhile to allow his brain to rest--sometimes, once he starts seizing, it gets sort of stuck in that pattern, so hopefully a break will stop the constant seizures enough that they can bring him out of it, and begin figuring out what drugs they can remove and still keep things under control. They may also have to adjust the shunt, but at this point Betsy said it's more a "wait and see" period. I will update as more information becomes available.

June 18, 2011 8:30 a.m.--Early phone call from Betsy:
Please keep Ross in your prayers--Betsy just called from San Francisco. Last week, Ross appeared to be having more seizures, and concerned the shunt might have failed, she and Rusty took him to UC San Francisco Wednesday, June 15,where he was admitted immediately. After tests were run, it was discovered that he is seizing almost constantly, and even on five different anti-seizure drugs, they've been unable to get the seizures under control. He's still able to communicate, though not as well as he has been. Betsy said the shunt is working and the ventricles in his brain are smaller, but there is no sign of infection. He may have aspiriated fluids, but there's no pneumonia at this point, which is good. At this point, they have no idea what is causing the seizures, but Betsy said care at UCSF has been excellent and they fell that Ross is in good hands. Please hold all of them in your thoughts and prayers. I will update as I have more information.

June 3, 2011--Today marks nine years since Ross's horrible injuries occurred. I have an update from Betsy:

(photo is Ross with a friend's baby, 6 month old Joan)

Today is the ninth anniversary of that terrible day when an inattentive driver drove into the bike lane and hit Ross from behind. Our family relives that day every year.  This year we are not only grieving for what Ross has lost, but we have been flattened by another event on Monday. My bother Bob suffered a big heart attack. We are grateful that he is talking and appears to be cognitively okay, and we are waiting to find out what the long term effects are. Ironically, he is the only one of my family who is also a cyclist. Please keep him in your prayers.

Ross has had a difficult three weeks. He has been more confused and scared. Two weeks ago today, he had two grand mal seizures. Since then he has had daily partial seizures. In the midst of this he is making wonderful advances in speech, executive function, and motor skills. One example of this happened last night. He had dinner in the family room as usual. When he finished eating, I went to check something and the caregiver went to get Ross’s medicine. I heard Ross walking down the hall in his chair. He went into his room and pointed to his bed. I asked if he wanted to lie down and he nodded yes. After we helped him into bed, he pointed to the blankets on the window seat. I asked, “Do you want a blanket?” Ross said, “On my body.” I put the weighted blanket on him and gave him his rubber P for his mouth. As I watched him through the evening, I realized he had known what he needed. When I told the Occupational Therapist about it, she said we should try to give Ross the opportunity to decide what he will do next as much as possible.

We don’t know why Ross is having so many partial seizures right now. But one school of thought suggests that this may be a healing phase leading to much fewer seizures of any kind. In the meantime, we are controlling them with medication, supplements, proprioceptive tools like the weighted blanket and the oral P, and other calming efforts.  

Thank you for your love and support. Onward and upward!

April 30, 2011--Betsy just sent a video of Ross using the parallel bars to walk--the latest update is just below the video:




So much has happened over the last month and a half. The weighted blanket has been a great help in helping to calm Ross nervous system. Ross started to excel in speech and cognition immediately after we started using it. In addition to the weighted blanket he is using a hard rubber T for oral stimulation that also works to calm the central nervous system through proprioceptive stimulation. We had tried the T before, but he was not that interested. It seems that he had to develop more cognition in order to really relate to something in his mouth. We were so thrilled with his advances in every area. Then, about three weeks ago he had an absence seizure that gave us enough warning to get him into bed before the start of a big two part grand mal seizure, the first in three months. It was very intense and scary. Thankfully, we had asked for a prescription for oxygen because the next day Ross seemed to recover more quickly than usual. We think that it was because we gave him oxygen during and after the seizure.
Ross was just recovering when all of us came down with a virus (fever, high pulse rate, muscle pain). I concentrated on giving all of us Vitamin C and other supplements to boost our immune system. For Ross, being sick is bad enough, but more importantly, it increases the stress on his central nervous system and makes him more vulnerable to seizures. We spent a week trying to reduce stress, canceling therapies, and giving him lots of bed rest. Thankfully, Ross was much better by Easter Sunday when the three families who share holidays with us arrived. Not only did Ross feel better, he was able to eat dinner at the table with us with only one small upset. He loved the food. As usual, I sat next to him and hurriedly cut up meat and vegetables to transfer to his plate. I think he probably ate twice as much as anyone else. He smiled, laughed, talked and had a wonderful time. At one point I said, “Shades of the old Ross.” Because he was so happy, and entertaining all of us.
One day Ross, during physical therapy pointed to the parallel bars and let the therapist know he wanted to work with them. So Jeremiah and Jeannette set the bars up and Ross practiced walking between the bars. Then this week, on Tuesday and Wednesday, he again walked between the bars, holding the bars with both hands, and the left hand moving along the bar as he walked. This is a huge new development. So we are back to a more regular life, schedule, or what ever we may call it. Ross is intently watching television programs that involve lectures or teaching. He is happier and has fewer outbursts. I was very impressed last night when he was so congested because of airborne allergies caused by the large quantity of pollen that is a result of all the lovely rain we have had. Ross cooperated with my spraying his nasal passages, tried blowing his nose, and ultimately cooperated with my suggestion that he roll over on his stomach. Of course, all of that happened because he understood what I asked of him and was not afraid.
Rusty and I are so proud of Ross. He is actively engaged in getting better, and he has not given up. Onward and upward!

March 17, 2011--as Betsy says, a really incredible day:
Just a quick note because this has been an incredible day; I don’t know if it is just because of the weighted throw or not. The throw arrived first thing this morning, and we immediately put it over Ross who was dressed and waiting for Letha. We have kept the weight on his torso for most of the day since the throw folds up compactly and fits his chest when he is seated. The whole day has been rewarding. Ross has been dialoging with us all day. With Letha, he told her to put the mouth toy in her mouth. When she didn’t do what he wanted, he kept telling her it belonged in her body. Finally, he retrieved the word, mouth. Then there was a playful long discussion about it. At another time, he told Letha that she is a wife, a sister and a woman. This is fairly elemental preschool playfulness, but this is a delightful more advanced state for Ross.
Another thing is that the incessant teeth grinding (yes, he does have a mouth guard that he takes out and throws), has ceased. On the way home from the chiropractor Ross was playfully yelling at the trees we passed. He would yell something, then turn and laugh at us.
At lunch, he wanted to use a normal fork, instead of his special spoon and used it to eat all of his lunch. One other thing is that we are playing more complicated mimicking games with him. He is definitely more accessible. How wonderful!

March 16, 2011--a really promising message from Betsy:
A new paradigm opened for us about three weeks ago. Ross’s wonderful Occupational Therapist suggested that one way to bring Ross comfort from his anxiety, fear, and what we call behavioral seizures is the use of a weighted blanket to provide proprioceptive input, and deep pressure. Behavioral seizures is a term we have coined for Ross’s sudden confusion, frightened, defensive outbursts that have become more frequent, while the grand mal seizures are, thankfully, becoming less frequent. With the OT’s help, we began to see Ross’s behavioral seizures as being a byproduct of sensory overwhelm. The way that I see this is that as Ross gets better, he is more sensitive, and his brain and central nervous system are not yet able to modulate the sensory input. Letha suggested that we start using a weighted blanket when he is clearly feeling vulnerable, or is having a partial seizure or a behavioral seizure. I have ordered a weighted wrap that is ten pounds and, in the meantime, we are using a seven pound comforter I made years ago. The weight does calm Ross, and there are times when he lets us know that he wants the blanket. We have ordered the special blanket because, while it is heavy, it is not hot like the comforter. Overall, he is now calmer and there are fewer outbursts since we started using weight.
He has also been asking us (with gestures) to massage the outside of his gums, inside his lips. There are even times when he points to the special light device that we use to calm his central nervous system. So while he is more sensitive, he is also more able to let us know how to help him. For example, yesterday while working a jig saw puzzle, he started to have a partial seizure, and he pointed to his recliner. We helped him into the recliner, put on the weighted comforter, used the light, his seizure stopped, and he fell asleep. This is very exciting! Ross can now be part of the decision making and let us know what is happening.
Another big change is that Ross will say to us, “My brain hurts.” He has said this at different times, even during therapy. It may be a term as “Go Home” once was; a term with several meanings. It certainly could mean”I am having a hard time doing what you ask because my brain is hurt. He could also be telling us his head hurts.
Ross is also making wonderful progress in physical therapy, sitting on the therapy mat with a big ball on one side and a large block on the other, he pushes himself to standing. His standing at the island in the kitchen is better too. Ross is also using his left hand more, and I often see him looking at the left hand and its fingers and comparing them to his right hand and fingers. He also is moving his fingers independently, trying to straighten fingers on the right hand that have been curled with spasticity. In physical therapy, Jeannette has been working with Ross doing modified abdominal crunches. Yesterday he was lying almost flat in bed, holding his hands up in front of his chest. It took very little instruction from me for him to start to blow out as he brought his upper torso up a little. I don’t know if he was contracting his abdominal core muscles, but I am so excited that he is trying and he understands what he is asked to do.
One night last week, Ross stayed at the dining room table after dinner. He was clearly deciding to do something different. I brought over one of the wooden puzzles-very simple for him now. After putting the puzzle together, he was studying the picture of a blackboard with a simple arithmetic problem. We talked about the problem. Then I wrote a simple problem, 5-2 =__. Ross looked at it, and immediately wrote 3 with his finger. He continued to work four more problems that I wrote, pointing to the correct answer of three possible choices each time. I was so cautious about overstimulation and a possible seizure that I stopped the exercise. But we will be doing more.
Finally, we have been telling him for eight years that he is getting better. Lately, I have reminded him that he is getting better, and that is why certain things are happening. After dinner last night, we were sitting watching television and he was happily talking. We suddenly realized he was saying, “I am absolutely getting better.”
Indeed he is getting better. Miracles do happen. Onward and upward!

February 25, 2011--Betsy just sent a couple of new video links:

                     

February 15, 2011--a new update from Betsy:
Wow! When I think our life is going to slow down, it certainly doesn’t happen the way I plan. Ross developed a cold in mid January and was very congested. After a few days, I took him to the doctor to have his lungs checked, and was happy to hear they were clear. I gave him medication for his congestion, and he seemed fine, except for an elevated pulse. A week later, right at dinner time, he started a grand mal seizure. We gave him the medicine that is supposed to stop it; the seizure stopped, then started again, and didn’t stop. So, we called the paramedics and off we went to the ER. During the hospital tests they discovered Ross had a UTI. We were able to go home after three hours, and after starting antibiotics, Ross began to feel much better.
However, we then became sick with stomach flu, probably picked up at the ER. Rusty and I were very sick, and I was worried about Ross getting it since it could trigger more seizures. Rusty and I began to feel better after a few days, but it really took two weeks for us to recover. In the mean time, Ross had a short bout with the same flu. For two nights we took turns sleeping, checking Ross’s rising temperature and pulse every hour, constantly on alert for a seizure. Thankfully, Ross recovered much faster than we did. I am sure his immune system is stronger than ours.
Then the good things started to happen. Ross has started to do many new things. The first exciting event happened when we purposely left him lying flat in bed. He was calling, “Put me up.” “I want up.” “Up, now!” Then there was quiet. After a few minutes we heard the bed motor. Ross had rolled over on his left side, and pushed the rail control button to raise the head of the bed. This was a first. We had tried to teach him to use the controls, but he had not comprehended the process. A few days later, he was lying in bed, and he again started pushing the buttons on the railing. This time he raised and lowered both the top and bottom of the bed, just playing with the controls.
His dialogue is also improving. Last weekend, Harold was eating his lunch. Ross, who had just eaten, saw Harold’s food, and said, “Give me food.” Harold pointed to the food and said, “My food.” Ross said, “Yes, that is your food, but bring me my food.” Harold replied, “No food for you right now.” Ross then yelled, “That is totally wrong!” A few days ago, Ross was outside and (with supervision) had taken his chair over to where the van was parked. Ross said, “This is my car. I bought it.” He continues to move around the house, seated in the manual chair that lets him use his feet to move. He moves himself from his room, down the hall to the great room and back at least twice a day. Yesterday, he showed us a new variation by lifting his left foot several inches above the floor, while moving himself down the hall with his right foot. This, of course, requires coordination, and strong abdominal muscles to hold his left foot up. Furthermore, the OT told me that his standing yesterday was the best ever. She had him standing at the kitchen island, not supported or touching the island, and reaching for blueberries (to eat, of course). She said that he even turned his head to the right without losing his balance. Of course, the therapist and Jeremiah were there protecting Ross from any mishaps.
Needless to say, we are very pleased with Ross’s progress. Thank you to everyone who is part of this journey. We couldn’t do it alone.
Onward and upward!

January 12, 2011--a new year and a great update from Betsy:
We have been very busy at our house, and then we have had the lingering colds that it seems half of northern California world has.
Christmas was low key this year because we were preparing for the big New Years Eve event, the wedding of our daughter Ariel to Jeff Russell. It was a wonderful event, and a reunion with family, old friends, and Jeff and Ariel’s friends. Ross was present at the wedding and gave us a running commentary in a low voice. There were so many camera flashes that I was concerned about triggering a seizure. But Ross enjoyed all of it, even the flashing lights. Since I didn’t take pictures, I am indebted to my friend Patricia for the accompanying photos. I was busy watching Ross, and visiting with old friends and family members who came west for the wedding.
Ross delights in children, so he was happy to see his nieces and nephew. He also loved watching the children, especially the little ones who were in the wedding. Ross held court in his room after the dancing started. He seemed to understand who his cousins were, or maybe he just loved meeting these nice people who were talking to him. The next day at brunch with visiting family, he sat beaming at the head of the table, watching every one. Saturday and Sunday were spent with our daughter Liz and her family. We had hours of fun with the children, and oodles of laughing and playing. All of this fun was so stimulating that Ross did not sleep more than a couple of hours a night for three nights. He was also very agitated during the day and had a higher pulse rate. (For Ross this is a neurological indicator of a near seizure.) On Wednesday, I added more magnesium to his supplement regimen; the neurologist has told us that magnesium not only reduces spasticity but also can reduce the occurrence of seizures.
Starting on Wednesday night, Ross has slept through the night. He also is more communicative, he is telling us when something hurts, he is gesturing toward what he thinks will help him feel better. The most amazing breakthrough was on Thursday when we were pulling on his new high top boots. He kept telling us specifically how to put it on. “Put it on!” “Up and in.” “No” “Straight up and push.” His coordination, understanding, and verbal expression are now at a higher level. I feel very optimistic about Ross’s progress in 2011.
Ross also wanted to go into our bedroom the other night. He scooted his chair through the door, and wanted to sit in the easy chair. He sat and looked around for ten or fifteen minutes, and then motioned to leave. Last night he pointed to my coat hanging on the coat rack and wanted it as a throw while he rocked in his recliner. Ross is really much more involved in life now.
Today, the PT introduced a new exercise. Ross held a short bar with both hands, and hit a small swinging ball. He enjoyed it so much, that he started to move his left arm and hand to hit the ball. The intent of the exercise was to hit the ball with the center of the bar. Ross’s version was to alternate hitting the ball with the left side and then the right side. It was just as therapeutic, and probably a logical first step in hitting the moving ball.
This afternoon, Ross pedaled very fast on the spin bike, still in the recumbent position. Rusty commented that it was remarkable because Ross was experiencing the challenge of a hard sprint that left him “wonderfully” winded. This kind of intense cardio effort has been impossible for him until now.

December 4, 2010--just got a new update from Betsy:
Again, Ross traveled through a rough spell last month. During Thanksgiving week, Ross became more agitated and combative. In fact, on Thanksgiving, we brought him to the table for dinner, and he became so upset that we immediately took him back to his room for dinner. Without all the extra people around, he became calmer and enjoyed his meal.
The answer arrived the next day. On Friday, Ross received a manual wheel chair with large wheels (adapted to fit Ross) from a man whose wife had died. In this chair, Ross can move himself around the house by using his feet. Now Ross has some independence as he learns the intricacies of moving around on his own. He starts at the door of his room, makes the turn into the hall and scoots (uses his feet to propel the chair) down the hall, into the great room and wherever he wants. He has learned how to release the brakes, even the one on the left side. At meal time, when he finishes eating, he drops his spoon, releases the brakes, maneuvers around and decides what he wants next. He often wants to sit in the recliner. However, he insists on keeping “mine” chair close by. He still needs help making the transfer; but the OT is commenting that just in the last week he has made a huge leap, including incorporating the small steps necessary for ultimately transferring himself. We have observed much less anger, more smiles, more talking, and a better sleep pattern. He is definitely getting more exercise and using his feet and legs more. His left foot is in a better position as a result of this. I have ordered a pair of leather lace up boots which will help keep his ankle in the correct position. Ross loves shoes and he will be thrilled with his new boots. Now that Ross is mobile we have started to Ross proof his environment. On Monday, he searched for food. Now we know that we have to remove all those little and big objects that could cause trouble if he tried to eat them.
We could never have predicted that this chair would mean so much to Ross and his rehabilitation. It seems that this little bit of autonomy is very important to him. Rusty and I think that Ross’s increased agitation was the result of his feeling so helpless. As he becomes more aware, he is also more aware of how much he depends on others. Every step toward independence and normalcy is a blessed gift. Thank you for your help and prayers.
Onward and upward!

November 15, 2010--This video was taken on Ross's birthday in September--Betsy just posted it to YouTube and sent me the link:



November 10, 2010--Just received a note from Betsy, along with a drawing Ross did:
There are times when I look back at the BIG steps in Ross’s progress and realize that while I noted them, I didn’t understand how important they were. Ross has made many BIG steps in the last month, and I expect that the significance is going to be huge as Ross builds on them.
One event happened a few nights ago. Ross was watching TV in bed and by 9:30 I needed a nap. I lowered the head of Ross’s bed a little, but he didn’t want it lower. I fell asleep in the bed in his room and at some point woke up to turn the TV and light off. Ross was sound asleep. Some time later, I heard him say, “…Roll me, move me down, help me please!” I turned on the light, lowered the head of the bed, got him more covers (he loves blankets and quilts, the more the better), and said something about making him comfortable. Ross smiled sweetly, pulling the blanket up with his right hand, and we went back to sleep. I kept waking during the night, filled with wonder at that small event. I think this was another step in Ross’s blossoming ability to know what he needs and to tell us in words.
Several weeks ago, we watched the rescue of the San Jose Miners, as did many people around the world. Ross was very interested, and as they started to bring the men up, Ross was raising his right arm in the air, over and over, and saying, “Up, up.” Several days later he drew a picture that I believe was inspired by watching that rescue for most of the day. I think I would missed the details, but Jeremiah, with a builders eye, was able to ask Ross the proper question for understanding the picture. For us, this is another amazing step in Ross’s progress. A few days later, Ross printed his name, but turned the R into a man running.
I have also been noticing that even when Ross is discouraged or feels defeated, he still will work with us, in therapy, playing with the ball or doing jigsaw puzzles. Recently, Jeannette, the PT, asked him to use his left arm. Ross replied, “I can’t do that. I can’t use that arm.” He then proceeded to do what she had asked. I remember being asked three years ago why I thought Ross just keeps working to get better, despite how hard it is. I have decided that it is because Ross has been blessed with a positive enthusiasm for life, and that serves him well through this long rehabilitation process. Each day he has to deal with sadness, confusion and anger, but we are seeing more talking, more spontaneous physical work, and more joy as he moves through the day.
Another increasingly independent move on Ross’s part is to lie in bed and do repetitive high right leg lifts. Last week, Ross was doing multiple (maybe thirty or more) leg lifts and Rusty came in to watch. He then supported Ross’s left leg at the calf and asked Ross to lift his left leg. Ross lifted his leg from the hip (using his hip flexors) at least twenty times until Rusty stopped supporting his leg. Afterward, Ross continued to practice with lower leg lifts on his left, without support. Aside from being meaningful independent activity, and a significant improvement in lifting, it is an important development for independent walking.
One last anecdote: Yesterday Ross said, “My mother said, ‘Ross, Ross! Be a man!’” Was it a joke or a part of his internal dialogue? I think it was both.
Onward and Upward!

October 8, 2010--I've been wondering why I hadn't heard from Betsy for awhile, but now I know:
I meant to update sooner, but I have been exhausted. First, on Ross’s birthday we spent five hours in the emergency room. A seizure turned into a series of seizures that we couldn’t stop. (The clinical term is persistent seizures.) The paramedics stopped the seizing with an IV sedative, and we all agreed that Ross should go to the hospital. Five hours, a lung x-ray, and a CT scan of his head later, we brought him home. Fortunately, we had celebrated his birthday on Sunday, two days before, when Ariel and Jeff could be here. Over the next three weeks, Ross, I and Rusty in succession were sick. Thankfully, we are on the other side.
The week after Ross’s hospital trip, he became extremely congested from either allergies or a bad cold. I pulled out everything in my home remedies cupboard and prayed that he didn’t start to seize. Searching for anything pertinent, I reviewed the list of food allergies compiled by a homeopath to whom we were referred five years ago. The list is so restrictive that over time I frequently fudged and gave Ross peppers, strawberries, corn, etc. While I was researching, I pulled out the Blood Type Diet book- another source that is “outside the box”. Here was another list of problem foods, some of them were on the allergy list. So… for the last two weeks, Ross has been on a much more restricted diet, and he is much less congested. Rusty is dubious, but since Ross seems better, and he doesn’t complain as long as he has food, I think we’ll stick with it.
One of the things we have come to realize in the last eight months is that for Ross each little irritant or attack on his system builds the irritation load with which his system, including his brain, has to cope. For example, the medication change from Tegretol to VimPat, while it is ultimately good, has been a huge irritant neurologically. Add a virus that his immune system has to resist, add congestion that is irritating in its manifestation, sleep loss, and fatigue, and you have a neurologically fragile system. Or to be concrete, Ross has become more fragile. The LENS work is believed to be able to increase Ross’s hardiness so he isn’t so reactive, but this takes time. Is it working? It seems to be working for Ross. His angry, confused outbursts that some neuropsychologists believe are organically seizure like have quieted.
The wonderful silver lining of these clouds is that Ross is blooming cognitively. He is talking more, joking, playing word games, working more complex jig saw puzzles, making comments about his environment, and talking about his experiences. I have four anecdotes to share. The first one occurred a couple of weeks ago. Ross was drinking a glass of water and spilled it. We wiped the water up with a towel, and Ross started a riff that lasted about fifteen minutes. Ross laughingly said, while gesturing with his right hand, over and over, changing the intonation and delivery, “IT’S ONLY WATER”. He laughed each time at his joke, and we laughed with him. He was so happy and we were delighted to be sharing the fun.
The second story started today. Over and over, throughout the day, he would say to one of us, “Hey, you!” Then he would open his mouth, stick his tongue way out (a neurological achievement) and say, “Ah h h h h. And laugh uproariously.
The third story was last week, when he looked over at a pile of books stacked precariously on a table. I could not understand the word salad, but I knew the look on his face and his tone. He was telling me that I should clean it up. It was so Ross of yesteryear. “Mom, that is so messy; why don’t you clean it up?” he would have said.
The last story is the most incredible of all. As I have talked to Rusty and the therapists who work with Ross, I think Ross was talking about his experience of his explosions when the fear and confusion (maybe associated with subclinical seizure activity) takes over. He was saying to me, over and over for about ten minutes, lifting his right hand up and down each time, “UP and down, up and down, it isn’t painful, it’s just hard.” I think he was telling me of his experience of being taken over by his emotions of fear and confusion.
As hard as this journey is for Ross and us, I am so grateful that Ross is with us, and that with God’s blessing and the help of everyone, Ross is getting better. Thank you for your prayers and support.
Betsy
Ross’s proud mother

September 6, 2010--just recieved a note from Betsy. Tomorrow is Ross's 34th birthday.
It has been too long since I checked in. One reason is that we have had sporadic e-mail and internet service for most of the month. A power surge created great damage for our local provider and they have had a difficult time restoring consistent service.
The other reason is that Ross was sick for a week. It started with severe nasal congestion; this is not unusual because Ross is very sensitive to allergens and we live in an area of California that flourishes with growing things and pollen. In addition, the anti-seizure medications he takes can increase congestion. Ross had no fever, but he did have an elevated pulse rate. The on-call doctor said, “If it gets worse, take him to the ER.” Since he still has a G-tube for emergencies, we were able to give him food, water and medicine for four days. When I asked him if his throat was sore, he nodded affirmatively. I couldn’t look at his throat, but I did see blisters on his lips. On the third day, Ross’s doctor prescribed antibiotics, and Ross immediately started to feel better. On the evening of the fourth day he was back to eating orally. Because he was sick, he started to have seizures, most of them the small versive seizures that he had in the spring when he was sick. Thankfully, the seizures were over by the fifth day. We saw the epilepsy specialist the next week, and he said the seizures happened because Ross was sick. Being sick lowers the seizure threshold. He also thought that he must have had a bacterial infection since he improved after taking antibiotics.
This was the sickest Ross had been in a long time, and it happened on the weekend. I have thought a lot about this in the last couple of weeks. I now realize that we must be prepared for emergencies like this. I have discussed this with Ross’s doctor, and we now have a plan to take care of Ross in this in-between time when Ross is sick, but it is not necessary to go to the Emergency Room. Once again, I am very thankful for Ross’s doctor and the way he works with us to provide the best care for Ross.
Ross is continuing to make progress. We were very relieved that his speech was even better, more fluent words and more complicated statements, after he recovered.
Ross’s thirty-fourth birthday is tomorrow, September 7. Our family celebrated his birthday with his favorite Moroccan Chicken and chocolate cake yesterday. Again, it is a poignant time, but we are so happy that he is continuing to make progress. Onward and upward!

August 13, 2010--Two new videos from Betsy, of Ross playing ball with his therapy team:


                 

July 24, 2010--Just got a really neat update from Betsy:
Ross went to the dentist yesterday. We were somewhat apprehensive because of his recent agitation. Thankfully, he was very calm and did not resist the preparations for sedation. We were relieved, to say the least. When the dentist announced “no new cavities” we were ecstatic. This was the best dental report in the last eight years.  Ross gets most of the credit for that because he has been letting us brush his teeth twice a day.  I think that good nutrition and no added sugar (except the agave in his small daily serving of coconut milk ice cream) helped.  
I also want to tell you about Ross throwing a tennis ball for our dog, Jo. I’ll start the story on Tuesday night when Ross was awake until 2 AM, quietly working the fingers of his right hand, touching different fingers together.  The next day, after physical therapy, Ross sat in his recliner and Rusty sat next to him. The dog wanted to play ball and Rusty put the ball in Ross’s lap. Usually Ross picks up the ball with his thumb and index finger and lets it drop on the floor. Well, this day, Ross picked up the ball with his open hand and threw the ball across the room for the dog. He did this over and over for about ten times. Each time he threw the ball, the dog ran to get and brought it back. One time, as Ross was about to throw, Ross looked at Jo and said, “Are you Ready?” Another time, as the dog ran, Ross said, “She’s beautiful.” What a gift!  We are blessed.

July 18, 2010--A little late, but just got an update from Betsy--I'm amazed she's able to find time to get them to me at all!
I apologize that tomorrow has turned into three days. Ross had a seizure that started while he was napping on Thursday afternoon. It was definitely different; it was a strong partial seizure, but with a lot of characteristics of a grand mal. My first thought was that the Vimpat stopped it from spreading. We had discontinued the final 100 mg of Tegretol exactly one week before. Three times since then, we have suddenly put him in bed because of pre seizure activity. Sometimes he seems excited and that seems to either cause instability or be caused by it. Thankfully, he has had no grand mal seizure activity since Thursday.
Ross is using new words and expressions. He said the other day, “My brain is on. Beware; in the future I will kiss you.” He has also started calling me “Honey” which is very sweet. What are not so sweet are the outbursts of inappropriate words. I am so grateful that Claudia Osborne and others have written about their own outbursts as they recovered from brain injury. I think I would be far more upset if I hadn’t been forewarned.
We just put him in bed about thirty minutes ago because his legs were shaking, his mouth drooping and staring off to the right. After he was in bed, he said’ “Don’t hurt my head.” I asked if his head hurt and he nodded yes. I asked him to show me where it hurt and he touched his forehead. This ability to be specific is also new. As I was leaving his room, he said, “Turn on the TV to channel 5.” Raising Ross again reminds me of the days when we used to say our children were five or six, going on twenty-one.

July 15, 2010--Betsy sent the following video to me this afternoon as an example of Ross's persistence. She'll be sending a new update to me tomorrow.




July 11, 2010--Update from Betsy:
Ross has had a good week. I canceled his therapy on Tuesday because he had not slept well the night before and seemed on the edge of a seizure in the morning. On Wednesday, we saw the neurologist. It was a good meeting and he gave us the go ahead to discontinue the Carbamazepine. Ross was more animated than ever with the doctor, who part of the time was talking with Rusty and me. Ross, as has been happening lately, wanted the doctor’s attention. Ross kept saying, “Look at me!” At one point he said to the doctor, “Brother, I love you and you love me. Look at me!” The doctor did talk to Ross and was very pleased with Ross’s cognitive progress. When we were ready to leave, Ross indicated he wanted the doctor to see him walk by trying to open his seat belt and moving his feet from the foot rest to the floor. He has never walked better; he was lifting his left foot high and forward as well as the right foot. We walked straight and tall, hardly putting any weight on us as he walked. Ross was delighted to be demonstrating his skill and the doctor was impressed.
On Thursday, during therapy, Ross not only walked from the therapy room to the house, but he did five circuits around the kitchen in his manual chair, using his feet and right arm to pull himself from one area to another to eat popcorn and blueberries. Again, he was excited with his mobility.
On Friday, Ross did the same routine. This almost daily workout plus walking twice a day, and pedaling for an hour daily is working. He usually gets a bed rest in the afternoon and he rocks himself in the recliner for a total of about two hours a day. This rocking is excellent for his development and reconnecting neurologically.
When we saw the chiropractic neurologist this week, I was telling him about the left side of Ross’s mouth sagging, and the confusion and agitation that accompanies it. He told me to have Ross kick a ball with his right foot and that that affects the left cortex and thus would help with the issues of sagging mouth and confusion. I don’t yet understand how it works, but I had a demonstration this evening. Ross was sitting in the recliner and has been agitated with the related symptoms for most of the day. I tried to think of an activity to distract him. I pulled out a rubber ball, sat in front of him and we played ball, rolling it back and forth for about fifteen minutes. We both enjoyed the game, and he became much calmer and his mouth was normal. This opens up possibilities as I am thinking about behavioral modification because brain injury survivors often have problems with inappropriate behavior as they recover. We are in a new stage of Ross’s rehabilitation. We are thankful and excited, and, of course, the new phase offers many challenges.

July 3, 2010--Update from Betsy:
It has been another eventful month -- three steps forward, one step back. Ross’s medication change is almost accomplished, but we are stuck on the last 100 mg of Tegretol. Ross has started having small neurological pre seizure events through out the day, as well as more angry outbursts that also may be small seizures. He is much more alert; he is talking more and continuing to move forward in mastering new motor skills. Last week was hard for him and for us. He was confused and afraid, easily slipping into agitation and anger. On Saturday, he had a 4 ½ minute grand mal seizure; when he woke up he was much calmer and this wonderful mood lasted for four days.
Today, he has been a hard task master. He is sitting beside me as I write, and he has established a space perimeter around himself; if we get too close he becomes enraged. It reminds me of the territory squabbles that children have. Now that I think about it, this is probably a significant advance in Ross’s growth. Another indicator is that some of the time he seems to remember to try to control his temper. For example, on Monday morning I told Ross to remember that he does not need to be afraid, and to not hit or kick during therapy. I asked him to use his words if he was scared. Well, during his session with Letha, he yelled once, but he did not hit or kick. Afterwards, I said, “Ross, I am so proud of you. You didn’t kick or hit.” A tired Ross responded softly, “I’m proud.”
Yesterday near the end of his session, Letha wanted him to eat popcorn with his left hand. Ross said, “Ross Dillon wants the whole world to know his arm is dead -- his left arm.”
On Thursday night we were sitting in the living room area of the great room and looking toward the kitchen. We have moved the dining room table to the wall and there is more space in the center of the room. Space that is now used for Ross to tool around using his old manual wheel chair; he moves by walking with his feet while seated in the chair. We put pop corn in a number of different places and he walks around the room to pick up pop corn. He also goes to the table where the water dispenser is, picks up a glass, holds it against the valve, fills his glass, drinks the water and puts the glass down again. Anyway, back to the story. Ross said to me, “I love this house, and my family can run around in it.” I think he was expressing his delight that he can now move around in this space on his own.
At the suggestion of Ross’s other therapist, Jeannette, I pulled out Ross’s old Legos (the big ones for younger children). He has always loved Legos and that hasn’t changed. He built a train with help, but he insisted on placing each piece wherehe wanted it. He did accept help in pushing the blocks together so they would stay. He likes to pull the train toward him with an attached cord -- another developmental milestone.
One last fun story! I held up a hand mirror so Ross could see his face. He leaned forward, kissed the mirror and said, “Hi Ross! How are you?” These are very big steps in self awareness. Rusty and I are thrilled. Ross has come so much further than the experts thought possible, and it isn’t over. Thank you everyone for your love and prayers. You help make this possible.
Onward and upward.

June 3, 2010--an important message from Betsy:
June 3—the eighth anniversary of the day our lives changed. We are blessed that Ross continues to make steady improvement and that, even though he is far from being independent, his recovery over the last eight years is miraculous. We have learned to walk in faith, to take joy in the present, and have met (in person and through the internet) many wonderful people. And yet, today has been a sad one. Rusty and I still grieve for what was lost, but our precious son said to me several times today, “I am happy!” As he walked down the hall during therapy with a strong person on each side, he said for the first time, “I am walking. I am strong.”
Yesterday during therapy with Jeannette, he was transferred to the plinth (therapy table). He reached out and grabbed the transfer pole, pulled himself up to standing, walked carefully around the pole and was trying to walk to the door and leave. I realized that thirty-three years ago, if he fell, it was not far. Now, we can not risk his falling, encourage him to pick himself up and try again. The good news is that he is so much more aware and able to respond to directions; so even though he needs someone by him, he will be able to use a walker and then perhaps a cane.
He still is on the last 200 mg of Tegretol because of the symptoms of neurological uneasiness. That is an awkward way of saying that we see many signs, drooping mouth, enlarged lips, confusion, and explosiveness, which are symptomatic of an irritated brain.
I’ll close with a few Ross isms that remind us of the old days. Yesterday, he looked at me and said, “Oh no, I see my mother. How shocking!” Over the weekend, he was dictating sentences to be typed on the computer. He said, “My mother loves me, but at night she is a witch.” He looked around to see if I was watching and said, “Change it to ‘she is a man.’” His dictation about Rusty is a little more formal, “At night great father at home, wife at home. Night before sleep at home.” For tonight, the world is full of the people and activities that Ross loves. God bless Ross and may God bless every one of you.