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PO Box 1509
Glen Ellen, CA 95442
Charles "Rusty" Dillon
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 www.rossdillon.com. 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.
Ross's mom has done extensives study on traumatic brain injury, and is often asked for her resource material. A bibliography has been added to the site. The link is above.
November 9, 2013 An update from Betsy:
Ross is entering another challenging phase. He has started working with the speech pathologist on developing clearer speech and communication. We have had two meetings with her (she is also the professional who helped him learn to eat again) in the last two weeks. She has given us mouth exercises for Ross, and has suggested we buy an I Pad type device for him. We will make that purchase as soon as we know which apps we will be using.
On Monday, he drank both water and thick juice through a straw and did a great job. He also is enjoying mimicking facial gestures with us.
We have seen some partial seizures, and a few days ago I was very concerned that his pulse rate was repeatedly quickly going up to 103 and down to 70 and then back up. Thankfully, he calmed down. The next day he was feeling better and he wanted to stay in the family room all day. Usually he goes back to his room and rests in bed after exercise, but he brought himself back to the family room, walking himself in his chair. The next day was the same until midafternoon when he agreed to take a nap. One exciting thing that day was that he started looking at the chart pages on which are listed all his medicine and supplements, his vital signs, his sleep times and his fluid intake for every day. He read through it and seemed pleased.
Ross’s second appointment with the speech pathologist went very well. She was very pleased with his ability to lick Nutella (an icing like substance made with hazelnuts and cocoa) from his lips and from behind his front teeth. We still have a lot of work to do, and it is obviously tiring for Ross to be trying to make his tongue and mouth do specific things. It seems also that he is more pensive since we started this new program, and I think that it may be triggering some memories. Jeremiah was reminding me that Ross was speaking more clearly at one point. We can’t remember when that was so I will go through all of our records and see if I can determine when. I am curious if it was before the fourth seizure medication was added.
Thank you for your support and love.
Onward and upward!
October 17, 2013 A quick note and a photo from Betsy of Ross walking with Jeremiah's help:
As usual, we have been very busy. Also, summer allergies/colds have sapped our energy. As I often say, the spring/summer allergies are the price we pay for living in this beautiful area.
Anyway, Ross is doing very well. He continues to enjoy using the addition and subtraction flash cards. One day, I watched him work out 8 + 6. He mumbled a little, as if he were adding, and then said 14. He is also using new words. The other day, Letha (the Occupational Therapist) was working with him writing on the Etch-A-Sketch. Ross said “I am the king, I am a boy, a son.” Letha asked him to write son, and he wrote “son”. That was a first. I had not heard him say son or seen him write the word. The next day, he was looking at his place mat which has a picture of a Paris street scene. He put his hand on the buildings and said “Building”. A few day s later I heard him saying “Petaluma town” over and over. (We lived near Petaluma until Ross was eighteen.) Jeremiah translated what Ross was saying, “Petaluma town, Petaluma town is not a country; it is buildings.”
Since Ross is now doing so much better, we are going to have a meeting with the speech pathologist in a few weeks, and hopefully start speech therapy. We think Ross is ready.
One note about our constant interference, seizures. Ross had a grand mal a couple of weeks ago that was very mild. Interestingly, he turned his head to the left, not the right as usual. During the seizure his left hand moved, as well as both feet. This was so different (left dominant rather than right), we think it was part of healing of his brain. Afterward, he was fine, and particularly verbal.
We have noticed that he is having small partial seizures the day after he has exploded, yelling and kicking. Usually these events are preceded by fear or frustration. Some professionals believe that these episodes are also seizures. Also, some neuropsychologists believe that this kind of seizures makes pathways for more seizures. It is certainly complicated, but we are thinking that some seizures are part of healing, and some can be more negative. This means we have to pay careful attention and not overstress him. Ross is teaching us as we go along.
Thank you for your support. Onward and upward!
September 4, 2013 Just received a new update and photos from Betsy, and the reminder that Ross will be 37 on September 7:
Ross continues to make great progress. A few weeks ago, when he was feeling rested and independent, he insisted on
putting the fire truck jig saw puzzle together by himself. He wouldn’t let Jeremiah remove any of the puzzle pieces from the box or make suggestions about the placement of the pieces. Nice!
Ross is also continuing to use his left side more. He regularly remembers to lift his left hand up to the arm rest of his chair or to the table. That side used to be totally neglected. Recently, during an exercise session, Jeremiah lifted his own arms above his head. Ross followed Jeremiah’s lead, and raised both arms over his head, not just the right arm. Ross said, “My left hand is not dead. And again he said, “My left hand is not dead.”
About a month ago, Jeremiah put Ross’s watch on Ross’s arm. Ross looked at the watch and said, “Brother, wrong!.” The watch was upside down and Ross couldn’t read it.
On Monday, the Occupational Therapist told me that Ross was touching the words in the book they were reading as she said the words.
We received a catalog from a company from which I have purchased clothes for Ross. I said, “Ross, I thought you might like this. That is where I buy clothes for you.” Ross looked inside, folded the catalog close to his chest, and said with a smile, “For my body.”
The other day, Jeremiah had Ross standing in the electronic wheel chair. Jeremiah usually places a yellow yoga block next to Ross’s left ankle to keep the ankle straight. Jeremiah had not put the block in place when Ross said, “Brother, brother.” When Jeremiah looked at Ross, Ross pointed to the yellow block to remind Jeremiah.
One final story that had Rusty and me in tears. I was in a store and saw flash cards, simple addition and subtraction. We have many flash cards, and Jeremiah uses them with Ross every day. I realized we didn’t have any math cards; these were simple with just single digits. When I gave the cards to Jeremiah, he immediately started working with Ross on subtraction. Ross read the problems out loud and gave the answers (not seen). For example, one of the cards looked like this: 9 Ross said without any help, nine minus 7 is two.
Clearly, the information is there. Ross has just needed to heal enough to access it. As we have been told, we do not see a ceiling on his progress.
Onward and upward! We could not do it without the love and prayers of all of you.
July 14, 2013--update and new photos from Betsy:
Why is Ross so happy? He just completed a task he set for himself. After lunch, he decided to spread the two towels out neatly on top of each other. It is not easy because the smaller towel on the bottom is not completely flat. But Ross is tenacious, and he tediously straightened the top towel at each corner.
He did this completely with his right hand. Jeremiah tells me that Ross did the same thing the previous day. As you see, when Ross turned to look at me, he was immensely proud of his work.
The big story for the last month is that Ross’s new orthotics are helping him to walk much better.
Ross is now walking with assistance from his room to the family room, about 50 feet one way, frequently five times a day. Sometimes, he decides to go outside through the garage, across the driveway, and in the front door. He also likes to detour by the cars, and often wants to get into them. Jeremiah is very good at letting Ross decide where he wants to go, and trying to make it work. As you can see in the picture, Ross’s posture is better when walking and Jeremiah is just providing the security of his hands, not primary support for Ross as in the past.
Ross is also enjoying making music. Letha, the OT, found drums for Ross at a garage sale. Ross loves playing them as well as playing chimes that were Ariel’s. Sometimes, he loves banging, but more frequently he plays rhythmically.
As I have reported, Ross has been pedaling a stationary bike while seated in his wheel chair for a number of years. He usually pedals for 30 to 60 minutes, often while watching a cycling video. He has recently started lifting small weights with Jeremiah, and one day expressed interest in the Total Gym after Jeremiah had finished a work out. As usual, Jeremiah used his ingenuity to make it work. Ross has the handles in his hands, and is doing rows and curls from his chair.
I have a final story about Ross from today. He was sitting at the dining room table, eating and looking out the window. He frequently looks at the mountains and the valley from that window. Today, he said something new about it. He said, “It’s a world outside..” One of us said, “It’s mountains.” Ross replied, “ It’s a world. A world called America. We are part of the world.”
Thank you all for your love and prayers for Ross. As you can see, he is more and more with us.
June 3, 2013--it's been eleven years since the fateful day of Ross's injuries. I just received a brief note from Betsy:
I am shocked that it has been two months since I wrote. We have had lots of emotional sunshine (Ross making advances) and enough rain (sorrows and setbacks). Since we are very sad today, the 11th anniversary of the terrible incident that changed Ross’s life, I will not say more than how grateful we are to everyone who has stood by us through the dark days and the sunny ones. Ross was given such a terrible prognosis in 2002, and he continues to confound that gloom. He brings joy to us every day, though we cry about every seizure.
The good news is that he continues to progress and enjoy life. My next update will list all of the good things that have happened in the last two months.
Thank you so much for your prayers, love, and support. We could not do it on our own.
Rusty, Betsy and family
April 5, 2013--Just got a really fun update from Betsy:
I am so happy to tell you about Ross doing something wonderful and brand new. He told Letha the OT about his experience e of eating. What follows is from her clinical notes on Thursday, April 4.
Client had just finished eating at OT arrival. He was a little distant (less than fully present). When offered the heavy blanket, he said no and pointed to OT; “for you.” He then began telling OT;
“The food goes in my mouth [demonstrated putting food into his mouth c 2 fingers.
It goes into my head, in my head.
It goes down [motions from chest toward stomach] into my body, my body.
It expands and makes me happy.” [lights up in a smile and extends arms to sides]
Writing on etch a sketch, he asked OT her name. Ross wrote: A, R, I, then turned the I into an E. He wrote another E, then L. He kept going doing 2 letters of the alphabet; AA, BB, CC, DD, EE, FF. OT asked; “What’s next Ross?” He wrote; G. OT tried to continue but this was it.
As usual, it is time to make more food. Hopefully, I will send more soon.
Onward and upward.
March 25, 2013--I am convinced Betsy senses when I'm getting ready to bug her for an update. Had planned to write to her tonight when the following arrived:
Whew! The last two months have been hectic. In early February, I realized that Ross’s weight gain, a side effect of one of his anti-seizure medications, might mean that his g-tube needed to be larger. He still needs the feeding tube because of seizures, and for the occasional times when he cannot safely take food, water and medications by mouth. I called a nurse who knows about this particular kind of tube, and she confirmed that he did need a larger size. However, she did not have the measuring device for determining the right size. I glibly said I would get a prescription from the doctor and order it. That was the start of a harrowing ten days when I spent many hours at the computer, trying to find this simple tool. I found only a handful of suppliers, all of whom, for one reason or another, could not help me. One kind man called from a New Jersey supplier to say his company did not ship to California, that finding the item would be hard, and that they were sold only by the case. Finally, I found a local pharmacy that could order a case, but delivery would take two weeks. What a pickle! We were worried because several nurses we consulted said it needed to be replaced a.s.a.p. We couldn’t even order the new size until we had the measuring tool. To make a long story shorter, a friend suggested another pharmacy that told us they could order just one, and have it in three days. With having the new tube shipped by air, we were able to put in the larger size ten days after starting the process. We explained to Ross what was happening, and he seemed to understand. In fact, when we had finished putting in the new larger tube, Ross said, “Thank you.”
Three days later, Ross had a grand mal seizure, much milder than in the past. We gave him the medication to stop it, but over the next hour, the seizure subsided and then started again. Since we had given him the maximum dose of the medicine that we can do at home we called 911, and the paramedics thought we should go the hospital. He was checked for pneumonia and other infections, and nothing appeared to be wrong. After five hours, we brought him home. Post seizure, Ross was unable to eat or drink for twenty-four hours, once again confirming that the g-tube is still needed. While we knew that Ross was not seriously ill, these times bring back the feelings of grief, stress, and helplessness that never completely go away. When Ross was back to normal a day later, he was bright and sharp, and once again we are seeing him make new progress. It really does seem that over the years, when he is making significant advances, at some point his brain needs to reset.
For the last month, Ross’s cognitive progress has been significant. One of the high points is that Ross is playing bongo drums. Letha, our wonderful OT, had been offering him the opportunity to drum, using a drum stick, drum pad, and a tambourine. He also was playing chimes that had been Ariel’s, but he was drumming them too. I was very impressed with a ten minute recital, which showed great stamina and some rhythm, and was very primitive. A week or so later, Letha found a set of bongo drums at a garage sale. Ross was initially tentative, but was clearly interested in playing. With the tambourine next to the drums, and Letha showing him, Ross was playing with a decided beat and adding in the sound of the tambourine. Ross is now enjoying drumming, and his drumming is a little more coordinated. The best part is that Letha saying the drumming is calming for him, and a way for him to self-regulate his nervous system. She also noted that his jamming with her and Jeremiah is a higher level of community. Previous examples of his “community participation” are when three or four of us play ball with him, or at Thanksgiving when he was miming with the guests.
While Ross is becoming more aware of others, he is more aware of himself. Several times when Jeremiah was exercising, he has said to Jeremiah, “Brother, I want to be like you.” One time, Jeremiah was lifting weights, and the other time he was repeatedly lifting his arms. Jeremiah is now doing weight lifting with Ross, using very light hand weights. We also see Ross independently lifting both arms repeatedly, and also experimenting with different ways to close his right hand into a fist.
Last week, Ross decided to go outside on his own. Jeremiah was cleaning up after lunch, and Ross was still sitting at the table. Ross backed away from the table and went to the front door. He turned the dead bolt, turned the knob and opened the door. He tried to kick the screen door open, but then pushed the handle, and used his right foot to open the door. By this time Jeremiah was behind the wheel chair, and ready to control the chair if Ross were in danger. Ross went down the ramp, out past the chicken coop and around the drive way. These times of self-direction and executive function are occurring more, and calling us to an even higher level of vigilance.
A few days ago when Ross was peddling the bike from a recumbent position, Jeremiah pointed to a picture of Ross on his bike on the wall. Jeremiah said to Ross, “You used to ride your bike a lot.” Ross proceeded to talk, some of his words not clear. Ross used hand gestures and words to say, he used to “go around and around, and up and down, and then my head was hurt.” He repeated this several times. As time goes by, I think Ross remembers almost everything from before, but the limitations of short term memory, speech problems and his physical disabilities restricts his full expression. As I write, I imagine Ross’s experience is like being locked in a room with memories, feelings, and experiences, frequently jumbled as if a storm has hit, but little of it is gone.
For those of you who are interested, Letha (the Occupational Therapist) recommended a book that I am finding very helpful. “In an unspoken Voice: How the Body Releases Trauma and Restores Goodness” by Peter Levine Ph.D.
We are blessed that Ross continues to progress in his rehabilitation. I hope that his progress offers hope to other families. Thank you for your prayers and support.
January 31, 2013--Betsy must have known I was planning to write and ask her for an update--it just arrived:
I apologize for being so late in writing an update. December was very busy, and January seems even more so. All is well, and Ross is continuing to move forward in both cognitive and motor skills. His understanding and communication have become more sophisticated. I will share some of the things Ross has said recently. One day, when we were out of sorbet, I improvised by grinding up frozen blueberries with water. When I removed the “ice cream” from the freezer, it was a block of blue ice. I was chipping away pieces to feed Ross when he asked, “What is that?” When I told him, he seemed to understand. I don’t remember him asking what his food was before. On another day, Jeremiah had given Ross raspberries in a bowl and he told Ross to use his fork. Ross said, “No, I have a hand.” He proceeded to pick the berries up with his fingers.
A friend gave Ross two jigsaw puzzles for Christmas. They both are animal scenes, one has light colors and a few animals like a beaver and a raccoon. The other is of darker colors and more ferocious animals. Ross has been working the first one by himself and completes it quickly. However, he keeps moving the second puzzle away when we ask him he if wants to work on it. I think that the second seems scary to him. In the meantime, his favorite jigsaw puzzle is a big picture of a fire truck.
We made a trip to Petaluma yesterday for an orthotics appointment. Ross is being fitted for orthotics that will allow him to walk independently. We had a good drive and he seemed to understand my monologue about how Petaluma was when we lived there, and how much it has changed since we moved eighteen years ago. Also, he kept telling me when to stop at red lights.
He is moving around the house on his own in his wheelchair. It is a treat to see him come down the hall into the kitchen on his own. When he is going to the dining room table, he comes toward the table, then backs up and makes a perfect entrance to the twelve inch space where a leaf in the table gives him proper leg room. It is like watching a driver back into a parking place.
When we saw the neurologist last week, Jeremiah was telling her that when he is heating up Ross’s food, he tells Ross to go to the table and get ready to eat. Ross goes to the table and positions himself, then he pulls the place mat forward, carefully makes it line up properly with the edge of the table, and waits for his food. He also puts down his spoon when he finished and puts down his glass instead of dropping it on the floor. One recent change we have noticed is that he eating more slowly (instead of shoveling it in). He even sometimes puts down his spoon, picks up his water glass and takes a sip, puts the glass down, eats some more and repeats the process of stopping to sip water. We believe this is a sign of being more organized in his thinking, and purposeful in his actions.
Jeremiah told us that when he and Ross were in the therapy room the other day, Ross stood up from the plinth, using the transfer pole, walked to his chair and sat down. When they finished, Jeremiah did a little bit of work himself on the total gym. Ross said, “Brother, I want to be like you.” Jeremiah let Ross pull the strap toward himself.
As I write this, I am watching Ross work a three dimensional puzzle that accepts different block shapes. Since it is almost 6PM and he is tired, he has left out four blocks that are similar. Earlier in the day, he would have finished the whole puzzle and moved it to the back of the table.
We are very thankful that Ross is doing so well, and it is hard not to constantly want more. Thank you for your support and prayers. We wish all of you a blessed 2013.
December 13, 2012--a quick update from Betsy:
Time flies when we are busy. We have had an active and good month. Ross had another grand mal seizure two days ago; again it was mild and he has quickly recovered. Rusty just told me that Jeremiah said that Ross has been awake and partying (laughter and banging on the side rail of his bed) since 3:30 AM. Rusty asked Ross, “Ross have you been awake since 3:30?” Ross answered, “Absolutely.” This jumbled sleep is probably related to the seizure. Yesterday, Ross, the man who always wants food, rolled himself away from the dinner table, rejecting his food, maybe because of the green broccoli. He had refused the green vegetable puree a few hours before. We ground the meatloaf and broccoli into a puree and put it back on the table. After exploring the room and looking at different things for about fifteen minutes, he returned and ate dinner. This again is new advanced behavior that has occurred right after a seizure.
Ross is reading the newspaper, children’s books, and through the day Jeremiah communicates with him by writing questions on the Etch a Sketch. One message yesterday was “Ross I want you to take a rest time.” Ross then allowed himself to be pushed in his wheel chair back to his room.
Thanksgiving was the best yet for Ross. Thanksgiving has always been his favorite holiday, and he always made sure to come home for it. After eating second helpings of everything, then pumpkin pie, Ross started a game with the people at the table, making funny faces/miming. Ross was totally and pleasantly engaged in the interaction for at least fifteen minutes. Then he was very tired, and Jeremiah took Ross back to his room to rest. Not too long after, Ross again was holding court with our extended family of friends. Onward and Upward!
November 5, 2012--it's been a while, but got a great note from Betsy tonight:
The last month has been a blur. Ross had a grand mal seizure in early October, but it did not last very long and, as usual, when he recovered from the seizure, he seemed not to have been harmed by the event. He is walking better, talking more, and demonstrating increased understanding.
Letha, the occupational therapist has been working with Ross since 2005. Yesterday, after his session, Letha said “I have been waiting for this day ever since I started working with Ross”. Everything seemed to click. When Letha arrived, Ross asked her how old she was. She asked him how old he thought she was. He started with four. She told him that she was older than four, and to try again. He proceeded to accurately count from four to sixty. When she asked him if he was ready to get out of bed, he pulled himself up and walked to his chair with little assistance. A little later he read what she wrote on the Etch a Sketch. She had written November 5, 2012. Ross read it back to her correctly. When they did a puzzle, Ross was able to put the pieces together to make the frame. When he became tired, he pushed himself away from the table and took a rest break. We are all celebrating his progress.
One day about a month ago, Ross’s eyes were red, particularly the left one. It looked as if there was something irritating it. I said, “I think we need to wash it.” I went to the kitchen and brought back a very small glass filled with sterile water. Ross reached for it and to avoid a conflict, I gave it to Ross. I was sure he would drink it. To my surprise, he moved the glass over his left eye, and poured the water on it. He had understood the whole interaction.
The following week, Ross had his annual visit with one of his doctors. Ross was a champ. Again, he had no outbursts of fear or confusion. In fact, Jeremiah remarked that riding in the van seemed to calm Ross. This was the second car trip which he enjoyed. He was also very calm and interactive with the doctor. Ross needed lab work and with trepidation we decided to have it done at the lab downstairs from the doctor’s office. Even though the tech had trouble with his left hand, the one that is always used for blood draws, and had to use his right hand, Ross was wonderful. He started calling the technician “Honey”, and when she finished he said, “I love you.”
Jeremiah has Ross on the floor on the mat almost daily. Ross’s strength and flexibility as he rolls around to capture raspberries is so much better. He is continuing to read more and more. I look forward to the day when he doesn’t have to have assistance for almost everything he does, and I am thankful for his incredible positive attitude. Onward and upward!
September 30, 2012--Received an update from Betsy, and am also including her note to me:
Hi Kate, I started writing this update weeks ago, but life and my forgetfulness kept getting in the way of finishing it. I hope to send another more recent update soon. I hope all is well.
August 24, 2012
I am so proud of Ross today. We usually take Ross to the dentist once a year which requires an oral surgeon, our dentist, a dental assistant, and a hygienist because Ross has to be sedated. We were unable to keep Ross’s appointment last year because of his hospitalization and subsequent fragility.
Always before, Ross has had a hard time not being able to eat or drink for eight hours before the appointment. When I talked to him last night about his dental appointment, he nodded affirmatively and opened his mouth wide. Today he has been super cooperative. He didn’t ask for food, he helped when we transferred him from bed to wheel chair, and he did not become upset during the thirty minute drive to the dentist. He definitely knows what is happening, and is cooperating with us. The dentist is very impressed with the condition of Ross’s teeth, and he says that good nutrition and thorough teeth brushing is obviously the reason.
We are continuing to watch the Petaluma Little League team play in the World Series. Ross is actively engaged in watching the games, and I think he even remembers that he once played Little League baseball when we lived in Petaluma.
One last note about Ross’s progress. Yesterday, Jeremiah called me in to see what Ross was doing. They were using Skip Bo cards and Old Maid cards. Ross first lined up the Old Maid cards from 1-10, and then he lined up the Skip Bo Cards 1-12 directly below the first row all by himself. Afterward, Jeremiah brought out a deck of Sight word cards. He would show a card to Ross and Ross would either say the word or spell the word, sounding out each letter. Jeremiah wisely only had Ross do about 30 cards because the whole set would have been too tiring.
Rusty and I are elated. As many families have discovered, there is hope after a TBI. Onward and upward!
August 21, 2012--just received an update from Betsy:
Hi All: We have been watching the Petaluma Little League team play in the Little League World Series.
This is especially meaningful because not only does Ross love baseball, he played Little League baseball when we lived in Petaluma. On Sunday, I walked in and spoke to him while he was watching the game. He let me know that I was interfering with his concentration. A little later, he started gesturing with his left arm in a swinging motion, and then raised his right hand to hold the bottom of his imaginary bat. (Raising his left arm is not easy for Ross.) As you can see from the picture, he was having great fun.
Onward and Upward!
July 16, 2012--New update from Betsy:
Ross has made a nice recovery from the setbacks in May that were related to the substitution of his medication. He is now more conversational and much more able to tell us what he needs and wants. He is also walking more. We are using his leg braces more, and this gives him the stability to walk without leaning on Jeremiah as much as before. We have also been giving him more standing time in the power chair. He spends about thirty minutes standing each day while he works jigsaw puzzles.
There have been a couple of times in the last week when Ross let us know that he was having a partial seizure. The first time, he called out to Jeremiah, “Brother, brother!” Jeremiah saw from Ross’s face what was happening. Ross said, “Home, home!” Jeremiah asked if he wanted to go to his room and Ross said, “Yes.” When he went to his room, Ross pointed to the photon stimulator. Again, during the weekend, Ross felt his mouth contort and started making an alarmed sound, while pointing to his mouth. Because he seemed in pain, my first thought was that he had bitten himself. I realized he was experiencing a partial seizure. Again, he indicated that he wanted us to use the photon stimulator. (The photon stimulator relies on a special light to calm the sympathetic nervous system.)
One day recently, after his shower and being dressed, Ross indicated that he wanted to walk to the living room. While Ross was walking, as always with Jeremiah’s help, Ross kept saying, “Thank you; I love you!” One day, Letha the OT asked if she could wipe her fingers on his towel. Ross very calmly replied, “I don’t care.” Ross is continuing to copy words; last week he copied the word Nature on his Etch-a-sketch.
It has taken years for me to accept that Ross having seizures because of a traumatic brain injury means that he has TBI induced Epilepsy. Since I accepted this idea last summer, after he was hospitalized with seizures, I have been receiving e-mails and articles from www.epilepsy.com. This includes articles from the Epilepsy Therapy Project. I highly recommend this website because it discusses many aspects of living with seizures, not just seizure medications. Of course, every one is an individual and no one thing works for every one, but the web site does discuss different ideas which have in turn helped us to understand more. For example, one recent article discussed the relationship between seizures and inflammation markers in the body.
Thank you all for your loving kindness. We know we are not alone in this journey. Onward and Upward!
June 9, 2012--I've just received an update from Betsy, and now understand why I've not heard from her:
I have considered several ways of starting this update that is so long overdue. I feel the need to be upbeat and to truly reflect the many daily blessings in our life. Our new granddaughter, Marley Mae, is a beautiful gift to her parents, our daughter and son-in-law, and to us. When Ross saw her the first time, he said, “I love you. I will love you forever.” I feel so at peace when I am holding her, and as I tell her, “We tell stories to each other.” I have forgotten the lullabies I once knew, and I will have to relearn them to sing to her.
The other part of our life, with our precious Ross, has been very rocky for the last three weeks. After a seizure free year, except for two small seizures due to excitement, Ross had two grand mal and five partial seizures within an hour on May 19. It was so scary because the usual medications did not stop them. Thankfully, our wonderful neurologist responded to my call and helped us make the decision to go to the Emergency Room. She called ahead and amazingly the ER was not slammed with Saturday night emergencies. To top it off, we had a good ER doctor and a good EMT team that delivered him to the hospital. From the start of the seizures at 8:30 P.M. to home again was less than five hours.
The post seizure period the next two days were hard because he did not bounce back quickly. We had to give him his medicine and food through the feeding tube we have kept for emergencies. The neurologist reassured me, saying that this was different from other times because the combination of anti seizure meds was different than before. She was so right. By Tuesday, Ross was taking everything by mouth again and improving in alertness.
A week later, on June 2, Ross started to have a high heart rate, and to spike as high as 160. In addition, his oxygen sat rate occasionally went below 90. This went on for two days. Ross’s pulse was down in the 80s with good oxygen saturation levels by Monday afternoon. As I was thinking about possible reasons, I suddenly remembered that the pharmacy had substituted one of his medications with a generic from a different manufacturer at the end of April. (I knew because the pills were a different color.) When I picked up the refill at the end of May, they had gone back to the original generic.
On Wednesday, we met with the neurologist and I told her about the medication change. What she said will be of interest to those who take care of loved ones with brain injuries. She said, “Generics often work, but seizure drugs are not the same, and are not to be substituted with generics.” I am convinced that the substitute Keppra is the reason Ross had to go through this. The doctor has told the pharmacy not to substitute, and I will check every time I pick up a refill for Ross. Ross is back to normal vital signs and he is definitely feeling better.
One other mishap happened along the way, and Friday brought a happy ending. On Sunday, Ross’s hospital bed stopped working. Rusty called and ordered a new motor on Monday, and it came yesterday. In the interim we had a “high tech” solution – we used different lengths of lumber to prop up the head portion for different positions. My husband is an accomplished tinkerer and he installed the new motor in this wonderful bed that was given to us when we brought Ross home nine years ago. The bed is still working hard, making life safer and easier for Ross and for us who take care of him.
Of course, amidst all of this, June 3 was the tenth anniversary of Ross being terribly injured and disabled. I agonized before Sunday about what I would write. As it turned out, we had no internet service that day, and I was so worried about Ross that I couldn’t calm down enough to write. This year I have been so aware of what Ross and we who love him have lost. I miss the old Ross so much, and I love the Ross we have now very much. I am proud of him, his determination, his incredible progress, and his loving sweet spirit. He inspires all of us to keep chugging along and to do our very best. As I think about it, I remember the fairy tales that ended, “They lived happily ever after.” I think many of us want that, and certainly I believed it was possible. Now, I know that for everyone, there are good times and bad times. There are joyful moments, and no matter how bleak it sometimes seems, we are very blessed that Ross is with us. We are also blessed by the people who have reached out to us over the last ten years. Thank you so much for your love and support. God bless you all.
June 3, 2012
It's been ten years today since Ross was hit by an inattentive driver while on a training ride on his bicycle. Please hold Ross and his family in your thoughts and prayers as they continue this long and difficult struggle.
© Kate Douglas 2010