Wednesday, November 30, 2005
November 30th, 2005
We made it! A little rough weather over Donner's Pass but we didn't have to put the chains on. It was 70 degrees yesterday amongst palm trees and green grass. I hear it's snowing back home. I am using the motel's computer just to let everyone know we are safe. CNS is excited to get started with therapy tomorrow. We are a little overwhelmed, tired and reality has hit that we are really here. We are staying positive that this is the right thing to do for Jess. We already miss everyone!
Sunday, November 27, 2005
November 27th, 2005
Happy 86th Birthday, mom and Happy Thanksgiving a little late to everyone!
When I said in my last update that Jess should shake up our routine, boy, did I get what I asked for. We have had a few crazy weeks. Lots of meetings. I met with the directors and therapists at school to talk about changes in Jess’ program. We sure have a great team! They all really care about helping Jess in any way they can. In Jess’ psyche for success class all of the kids wrote something special for Jess and gave him a hug at the end of day. Amanda said it was very emotional for her and I am sure for Jess too. The trimester has ended already.
Jess and I also had a meeting with Medicaid in Twin Falls and I left the meeting very frustrated and in tears. They informed me that they no longer would cover Jess’ therapists unless we drove to Twin Falls every day (60 miles one way) to go to a Developmental Disability Agency. We do not have one in our area. They also will not cover Amanda and Daniel. The system that we all have paid into for our entire working life that is suppose to take care of the children, the disabled and our elderly is very sad. So, I am on a rampage that I won’t elaborate on. Someday I hope to make a contribution to changing the system.
We also traveled to Salt Lake City to take Jess to a neuro psychologist and had an MRI scan done. I went in with him to have the MRI and held his hand at the end of the tunnel for about an hour. The tapping noise is awful but Jess handled it and the trip pretty well. We are not really interested in the results. We know what they tried to pound into us after each CT scan early in his injury so we opted not to read the results of this test maybe someday. We also dropped off a video of Jess’ therapies for the doctor at the Primary Children’s hospital to see if he could qualify for their rehab program. Unfortunately, we still have not heard from them.
As many of you know, I have spent a good bit of time researching and trying to find a rehab facility that will take Jess. I have emailed Washington D.C., Seattle, Colorado and recently, due to a synchronicity of events, I also contacted a facility in California. I emailed a doctor who spoke at a Brain Injury Association Conference in Boise regarding my attending the conference and I also asked him if his facility could help Jess. His brother had suffered a severe brain injury so he started a privately owned rehabilitation center in Bakersfield, CA. He emailed me back and suggested I contact his Director of Admissions. To make a very long story short, they flew a representative out to evaluate Jess. She went to school with Jess, Amanda and I for 4 hours and watched Jess intently to see how he responded, how alert he was and how well he handled staying awake for the entire day. She was very informative about severe traumatic brain injuries and she was concerned that we did not really have anyone qualified to do intense “neuro” therapies. By the end of the day, before she went to the airport, she informed me she was going to recommend that Jess attend their very intense rehab program. They only take care of traumatic brain injury patients. She also told me Jess could have gone into their program right out of St. Al’s. I could write a book on how insurance drives our health care system and inhibits patients from getting the help they need. I do believe Jess needed to come home first though to remember where he came from. We are negotiating with the insurance company to help cover the $1,000 a day expense. But, no matter what, we are going to the Centre of Neuro Skills www.neuroskills.com in Bakersfield, CA!! We will start with a month and see how it goes.
Chris and I have gone through many emotions about this journey. It took us 1½ years to get set up at home with the necessary things to take care of Jess and organize all of his therapies and school. But, I have felt for a long time that we were missing something and as usual there is a power stronger than we are that is showing us this new road. Many lights lit this path to actually make it become a reality. Jess and I will live in a 24 hour assisted apartment. He will get intense therapy 4-6 hours a day 5 days a week. We will drive 14 hours in Jess’ van to get there and then Chris will fly home in a few days. He will come back in a couple of weeks and switch with me so I can come home, check on my mom and dad and work for a week. I was very concerned about leaving mom and dad alone so I tried again to seek help from the “system”. Again there are too many rules for any of us to fit into their “help” category so with much gratitude I am relying on my wonderful friends to keep an eye on them.
We are going to miss the wonderful people who have so graciously entered our lives and cared for our son. We have made many new friends that are a part of our family. We can’t thank everyone enough and hope they will return when we return.
Joey said he is sending me his old lap top computer so I can keep updating this website. We still need everyone’s good thoughts and prayers that this might just be the key to unlock the door to Jess’ recovery. Thanks for hanging in there with us. With much love, Pam, Chris and Jess
When I said in my last update that Jess should shake up our routine, boy, did I get what I asked for. We have had a few crazy weeks. Lots of meetings. I met with the directors and therapists at school to talk about changes in Jess’ program. We sure have a great team! They all really care about helping Jess in any way they can. In Jess’ psyche for success class all of the kids wrote something special for Jess and gave him a hug at the end of day. Amanda said it was very emotional for her and I am sure for Jess too. The trimester has ended already.
Jess and I also had a meeting with Medicaid in Twin Falls and I left the meeting very frustrated and in tears. They informed me that they no longer would cover Jess’ therapists unless we drove to Twin Falls every day (60 miles one way) to go to a Developmental Disability Agency. We do not have one in our area. They also will not cover Amanda and Daniel. The system that we all have paid into for our entire working life that is suppose to take care of the children, the disabled and our elderly is very sad. So, I am on a rampage that I won’t elaborate on. Someday I hope to make a contribution to changing the system.
We also traveled to Salt Lake City to take Jess to a neuro psychologist and had an MRI scan done. I went in with him to have the MRI and held his hand at the end of the tunnel for about an hour. The tapping noise is awful but Jess handled it and the trip pretty well. We are not really interested in the results. We know what they tried to pound into us after each CT scan early in his injury so we opted not to read the results of this test maybe someday. We also dropped off a video of Jess’ therapies for the doctor at the Primary Children’s hospital to see if he could qualify for their rehab program. Unfortunately, we still have not heard from them.
As many of you know, I have spent a good bit of time researching and trying to find a rehab facility that will take Jess. I have emailed Washington D.C., Seattle, Colorado and recently, due to a synchronicity of events, I also contacted a facility in California. I emailed a doctor who spoke at a Brain Injury Association Conference in Boise regarding my attending the conference and I also asked him if his facility could help Jess. His brother had suffered a severe brain injury so he started a privately owned rehabilitation center in Bakersfield, CA. He emailed me back and suggested I contact his Director of Admissions. To make a very long story short, they flew a representative out to evaluate Jess. She went to school with Jess, Amanda and I for 4 hours and watched Jess intently to see how he responded, how alert he was and how well he handled staying awake for the entire day. She was very informative about severe traumatic brain injuries and she was concerned that we did not really have anyone qualified to do intense “neuro” therapies. By the end of the day, before she went to the airport, she informed me she was going to recommend that Jess attend their very intense rehab program. They only take care of traumatic brain injury patients. She also told me Jess could have gone into their program right out of St. Al’s. I could write a book on how insurance drives our health care system and inhibits patients from getting the help they need. I do believe Jess needed to come home first though to remember where he came from. We are negotiating with the insurance company to help cover the $1,000 a day expense. But, no matter what, we are going to the Centre of Neuro Skills www.neuroskills.com in Bakersfield, CA!! We will start with a month and see how it goes.
Chris and I have gone through many emotions about this journey. It took us 1½ years to get set up at home with the necessary things to take care of Jess and organize all of his therapies and school. But, I have felt for a long time that we were missing something and as usual there is a power stronger than we are that is showing us this new road. Many lights lit this path to actually make it become a reality. Jess and I will live in a 24 hour assisted apartment. He will get intense therapy 4-6 hours a day 5 days a week. We will drive 14 hours in Jess’ van to get there and then Chris will fly home in a few days. He will come back in a couple of weeks and switch with me so I can come home, check on my mom and dad and work for a week. I was very concerned about leaving mom and dad alone so I tried again to seek help from the “system”. Again there are too many rules for any of us to fit into their “help” category so with much gratitude I am relying on my wonderful friends to keep an eye on them.
We are going to miss the wonderful people who have so graciously entered our lives and cared for our son. We have made many new friends that are a part of our family. We can’t thank everyone enough and hope they will return when we return.
Joey said he is sending me his old lap top computer so I can keep updating this website. We still need everyone’s good thoughts and prayers that this might just be the key to unlock the door to Jess’ recovery. Thanks for hanging in there with us. With much love, Pam, Chris and Jess
Friday, November 4, 2005
November 4th, 2005
Today is Jess' grandpa's 88th birthday! Happy Birthday, Dad! Here is an update written by Amanda, our wonderful caregiver who takes Jess to school. As you will see we are truly blessed to have someone so loving, caring and concerned about his welfare....thanks Amanda!
Hello faithful readers! My name is Amanda and I have the best job in the world, taking care of Jesse Matey. I have been trying to organize my time a little better so that I could sit down and type up a brief page to be posted on the website. Finally, I am able to do this! I am a student myself, and my weeks are busy due to taking care of Jess, attending class, and studying.
To those of you who do not know me, I will brief you on a little history about myself. Before I moved to Hailey, I was currently living in Pocatello and worked for Portneuf Medical Center. I have ten years experience working with traumatic brain injuries, along with other areas of care that consist of: Medical/surgical, rehabilitation, same day surgery, pediatrics’, long term care, cardio vascular care, transitional care, and behavioral health. I do not have any children yet; my fiancée is hoping to change that as soon as we get married! I was attending ISU, but became very unhappy with their curriculum, therefore I transferred to CSI. I can honestly say that the instructors at CSI are much better!! So far my experience with this college has been wonderful. I am a certified “SNAP” which means, “student nurse apprentice”. The state of Idaho actually has a whole separate certification for SNAPS, unlike the certified nursing assistant, which is a separate classification. The job duties are similar, just a few changes with SNAPS that involve the fundamentals of nursing.
I recently became engaged in June of this year to a terrific man who is well known to the community, is hard working, compassionate, and a dedicated police officer. And yes, I am very proud of him! I feel truly blessed by God that he came into my life. Due to my recent engagement, and transferring colleges, I now reside in Hailey and love the area. Ok on to Jess.
Jess is an extraordinary young man who is getting stronger and progressing
more each day. I started working with him on July 5th of this year, and for me it was a matter of learning his body language. Pam was so good about just letting me come over to their home and observe Jess all day. I needed to get a better understanding of his needs, wants, and agitations when they arose, so that I could give adequate care pertaining to his type of injury. Jesse has the frontal lobe damage, anteriorly, right under the forehead. This is known as the Cerebral Cortex and it has a variety of functions, for example:
1) It determines what we are doing within our environment, and how we initiate our responses to activity.
2) It controls judgment, emotional response, and assigns meaning to words.
3) It involves word associations.
4) And it is the memory bank for habits and motor activities, examples: ambulation, weight bearing, and when to move extremities.
This is quite the range! And just think, this is only what the frontal lobe performs, the surrounding areas of the brain do much more!
I take Jess to school 4 days a week and we attend class and have a variety of subject matter as projects that we work on together. This involves: Painting, media, and psyche. Yes! Jess can paint, and he is pretty good at it too! Sometimes he draws, other times I will work on the communication process by using cards that have objects on them. I ask him simple “yes/no” questions and he responds with eye blinks. Two blinks for yes, one blink for no. However, He has a new speech therapist working with him and she changed the eye responses to hand responses. So now when I ask him a question, he answers by taking his left hand and opening it up for “yes” and makes a fist for “no”.
For some reason this therapist felt that the hand response would be better then responding with the eyes, because Jesse opens his hands up frequently, more so his left then his right. So far, he has been 80-90% accurate. However, he has days that he really doesn’t feel like giving me a response and this is normal. For those of you who do not know what a speech therapist job entails it is this; they primarily work on swallowing mechanisms, along with language skills and concepts. Due to the nature of Jesse’s injury, the messages from his brain to his extremities can become delayed, and his responses may be slow, other times they are quick. This too is normal.
The media class involves Jesse opening up his hands and placing them on the computer keyboard, which he does, when I ask him too. With my encouragement, he proceeds with light pressure on some of the keys and types a few letters. I position him so that he can see what he is typing on the computer monitor, and I enlarge the font. Other days during this class period I might pop in a DVD, and apply headphones to his ears and let him listen while he watches the screen. The DVD’s are mostly learning tools to help him progress further along. There have been days where Jess simply does not want to be real productive due to fatigue or depending on his mood. Again this is a normal and common response of TBI’s (traumatic brain injuries).
Psyche is the other class that Jess and I attend together. What a fascinating class! During this period Jess is more involved with the students by listening to discussions and basically just being a part of the group. There is something about this class that really gets Jess talking. And I don’t mean verbally, because he is not able to speak due to his injury. He can make soft monotone sounds, like he was humming, but it is his body language that gives him away. He can hear everything that goes on around him, and at times he responds to what is being stated. It is so interesting to watch him, because he can move all of his extremities including his neck and head, as well as producing the most comical facial expressions at the same time. Because Jesse’s judgment and motor activity has been impaired, he is unable to ambulate, but hopefully, with time and continued therapy this will change.
I tried really hard not to get too lengthy on my story of Jess, but I can’t help it, there is simply too much that I want to share with ya’ll!!
Jess Matey has managed to fill a void in my life that has really helped me. When I was just 18 years old, I lost my only brother to a horrible car accident. He was my best friend, and even though the years have passed since his death, not a day goes by that I don’t think about him. Jess reminds me of him in so many ways. This wonderful, handsome young man, whom I take under my wing 4 days a week, gives me inspiration, hope and courage. I am determined to do whatever I can with my skills and knowledge, to try and give back the life that Jess once knew before his accident. With teamwork from therapy, friends, and family, I am praying for his recovery. It has only been a year since Jess got hurt, and it could take another year or more before we might see any huge physical or mental changes. However, it may be less, he might surprise us all one day. From my experience working with TBI’s (Traumatic Brain Injuries) I have seen worse case scenarios that have been able to live a good quality of life, despite their limitations. For now, we can only “hope” for the better, and keep our spirits up.
Pam and Chris are absolutely amazing people for what they have done for their son. They have managed to maintain their composure, dignity and strength, in spite of what they have endured. They give so much unconditional love that it radiates from deep within them. If everyone could see the daily routine of these two incredible individuals, you would say to yourselves, “How do they do it?” During one of the many wonderful class discussions in psyche, Midge Patzer of Wood River High School recently addressed her students with this statement, “Love is a powerful emotion”. It is the love for their son that is the driving force behind their efforts, the one thing that keeps them continually moving forward. With love comes their extreme determination, willpower, faith and hope, that one day, Jess will walk and talk again. We are all right there with you Pam and Chris!! I would also like to add that Pam takes care of her folks as well, as you can see she is a busy little bee!
Well, this is everything in a nutshell. I will try and post Jesse’s progress as it happens, just to let everyone know how he is doing. I keep a daily journal for Jess and write down things that occur during the day and then some. I am hoping that one day he will read the entire journal to me out loud, possibly giving me some feedback on it. For now, Jess is making good progress, it is slow, but continuous, and at this point in time, this is all we can ask of him. He is able to perform certain functions now that he couldn’t do a year ago, for example; communicating, moving extremities, and swallowing thickened foods. In my opinion, this is tremendous progress for this young man!!
Life is so interesting at times, there seems to be never ending obstacles, and we struggle with many concepts from time to time. My perceptions of life in general, I view as though I were looking at myself in a mirror. I would like to share this philosophy of mine with you all.
An individual can perceive themselves like reflections in a mirror, their expectations through self-fulfilling prophecies build between the relationship of self-concept and behavior. The images that we see, can shape or mold us into characters of self-examination. We view our reflections of ourselves as we stare into a mirror. We see our past, our future, our sorrows, our pain; we see whom we have become regarding life’s game. We see how the decisions that we make can have a tremendous impact on our lives. The behavior we project towards others, the philosophy of “choice” is admirable only when stripped of its reality, only when worshiped as an ideal, believed in its abstract. Let faith, hope and harmony complete you as you move through these obstacles in life, it will keep the spirit strong!
*~I WISH YOU ALL A HAPPY THANKSGIVING, GOD BLESS~*~
~*~SINCERELY, AMANDA~*~
Hello faithful readers! My name is Amanda and I have the best job in the world, taking care of Jesse Matey. I have been trying to organize my time a little better so that I could sit down and type up a brief page to be posted on the website. Finally, I am able to do this! I am a student myself, and my weeks are busy due to taking care of Jess, attending class, and studying.
To those of you who do not know me, I will brief you on a little history about myself. Before I moved to Hailey, I was currently living in Pocatello and worked for Portneuf Medical Center. I have ten years experience working with traumatic brain injuries, along with other areas of care that consist of: Medical/surgical, rehabilitation, same day surgery, pediatrics’, long term care, cardio vascular care, transitional care, and behavioral health. I do not have any children yet; my fiancée is hoping to change that as soon as we get married! I was attending ISU, but became very unhappy with their curriculum, therefore I transferred to CSI. I can honestly say that the instructors at CSI are much better!! So far my experience with this college has been wonderful. I am a certified “SNAP” which means, “student nurse apprentice”. The state of Idaho actually has a whole separate certification for SNAPS, unlike the certified nursing assistant, which is a separate classification. The job duties are similar, just a few changes with SNAPS that involve the fundamentals of nursing.
I recently became engaged in June of this year to a terrific man who is well known to the community, is hard working, compassionate, and a dedicated police officer. And yes, I am very proud of him! I feel truly blessed by God that he came into my life. Due to my recent engagement, and transferring colleges, I now reside in Hailey and love the area. Ok on to Jess.
Jess is an extraordinary young man who is getting stronger and progressing
more each day. I started working with him on July 5th of this year, and for me it was a matter of learning his body language. Pam was so good about just letting me come over to their home and observe Jess all day. I needed to get a better understanding of his needs, wants, and agitations when they arose, so that I could give adequate care pertaining to his type of injury. Jesse has the frontal lobe damage, anteriorly, right under the forehead. This is known as the Cerebral Cortex and it has a variety of functions, for example:
1) It determines what we are doing within our environment, and how we initiate our responses to activity.
2) It controls judgment, emotional response, and assigns meaning to words.
3) It involves word associations.
4) And it is the memory bank for habits and motor activities, examples: ambulation, weight bearing, and when to move extremities.
This is quite the range! And just think, this is only what the frontal lobe performs, the surrounding areas of the brain do much more!
I take Jess to school 4 days a week and we attend class and have a variety of subject matter as projects that we work on together. This involves: Painting, media, and psyche. Yes! Jess can paint, and he is pretty good at it too! Sometimes he draws, other times I will work on the communication process by using cards that have objects on them. I ask him simple “yes/no” questions and he responds with eye blinks. Two blinks for yes, one blink for no. However, He has a new speech therapist working with him and she changed the eye responses to hand responses. So now when I ask him a question, he answers by taking his left hand and opening it up for “yes” and makes a fist for “no”.
For some reason this therapist felt that the hand response would be better then responding with the eyes, because Jesse opens his hands up frequently, more so his left then his right. So far, he has been 80-90% accurate. However, he has days that he really doesn’t feel like giving me a response and this is normal. For those of you who do not know what a speech therapist job entails it is this; they primarily work on swallowing mechanisms, along with language skills and concepts. Due to the nature of Jesse’s injury, the messages from his brain to his extremities can become delayed, and his responses may be slow, other times they are quick. This too is normal.
The media class involves Jesse opening up his hands and placing them on the computer keyboard, which he does, when I ask him too. With my encouragement, he proceeds with light pressure on some of the keys and types a few letters. I position him so that he can see what he is typing on the computer monitor, and I enlarge the font. Other days during this class period I might pop in a DVD, and apply headphones to his ears and let him listen while he watches the screen. The DVD’s are mostly learning tools to help him progress further along. There have been days where Jess simply does not want to be real productive due to fatigue or depending on his mood. Again this is a normal and common response of TBI’s (traumatic brain injuries).
Psyche is the other class that Jess and I attend together. What a fascinating class! During this period Jess is more involved with the students by listening to discussions and basically just being a part of the group. There is something about this class that really gets Jess talking. And I don’t mean verbally, because he is not able to speak due to his injury. He can make soft monotone sounds, like he was humming, but it is his body language that gives him away. He can hear everything that goes on around him, and at times he responds to what is being stated. It is so interesting to watch him, because he can move all of his extremities including his neck and head, as well as producing the most comical facial expressions at the same time. Because Jesse’s judgment and motor activity has been impaired, he is unable to ambulate, but hopefully, with time and continued therapy this will change.
I tried really hard not to get too lengthy on my story of Jess, but I can’t help it, there is simply too much that I want to share with ya’ll!!
Jess Matey has managed to fill a void in my life that has really helped me. When I was just 18 years old, I lost my only brother to a horrible car accident. He was my best friend, and even though the years have passed since his death, not a day goes by that I don’t think about him. Jess reminds me of him in so many ways. This wonderful, handsome young man, whom I take under my wing 4 days a week, gives me inspiration, hope and courage. I am determined to do whatever I can with my skills and knowledge, to try and give back the life that Jess once knew before his accident. With teamwork from therapy, friends, and family, I am praying for his recovery. It has only been a year since Jess got hurt, and it could take another year or more before we might see any huge physical or mental changes. However, it may be less, he might surprise us all one day. From my experience working with TBI’s (Traumatic Brain Injuries) I have seen worse case scenarios that have been able to live a good quality of life, despite their limitations. For now, we can only “hope” for the better, and keep our spirits up.
Pam and Chris are absolutely amazing people for what they have done for their son. They have managed to maintain their composure, dignity and strength, in spite of what they have endured. They give so much unconditional love that it radiates from deep within them. If everyone could see the daily routine of these two incredible individuals, you would say to yourselves, “How do they do it?” During one of the many wonderful class discussions in psyche, Midge Patzer of Wood River High School recently addressed her students with this statement, “Love is a powerful emotion”. It is the love for their son that is the driving force behind their efforts, the one thing that keeps them continually moving forward. With love comes their extreme determination, willpower, faith and hope, that one day, Jess will walk and talk again. We are all right there with you Pam and Chris!! I would also like to add that Pam takes care of her folks as well, as you can see she is a busy little bee!
Well, this is everything in a nutshell. I will try and post Jesse’s progress as it happens, just to let everyone know how he is doing. I keep a daily journal for Jess and write down things that occur during the day and then some. I am hoping that one day he will read the entire journal to me out loud, possibly giving me some feedback on it. For now, Jess is making good progress, it is slow, but continuous, and at this point in time, this is all we can ask of him. He is able to perform certain functions now that he couldn’t do a year ago, for example; communicating, moving extremities, and swallowing thickened foods. In my opinion, this is tremendous progress for this young man!!
Life is so interesting at times, there seems to be never ending obstacles, and we struggle with many concepts from time to time. My perceptions of life in general, I view as though I were looking at myself in a mirror. I would like to share this philosophy of mine with you all.
An individual can perceive themselves like reflections in a mirror, their expectations through self-fulfilling prophecies build between the relationship of self-concept and behavior. The images that we see, can shape or mold us into characters of self-examination. We view our reflections of ourselves as we stare into a mirror. We see our past, our future, our sorrows, our pain; we see whom we have become regarding life’s game. We see how the decisions that we make can have a tremendous impact on our lives. The behavior we project towards others, the philosophy of “choice” is admirable only when stripped of its reality, only when worshiped as an ideal, believed in its abstract. Let faith, hope and harmony complete you as you move through these obstacles in life, it will keep the spirit strong!
*~I WISH YOU ALL A HAPPY THANKSGIVING, GOD BLESS~*~
~*~SINCERELY, AMANDA~*~
Friday, October 28, 2005
October 28th, 8:30 p.m.
According to most everyone coming in contact with Jess, he is changing. Small but good changes! He seems more aware of his environment. Amanda held his arm while he painted a J on his paper in art this week. She is so good and patient with him at school and I know he is grateful to her for their companionship. We also have Daniel on Thursday who takes him to the horse arena and swimming every week. He always makes me smile with a joke or two. We have the best caregivers in the valley! They are just like family.
Jess was able to ride the horse around cones set up in the arena this week. The volunteers all agree it is so much easier to support him. His trunk is getting stronger and his eyes are more focused straight forward. He still has to ride with the neck brace and with 4 people at his side. We are so thankful to the volunteers that show up twice a week.
We made his grandma cry the other night as she watched me ask him to kick his leg up and he responded with a couple of huge kicks with each leg while sitting in his chair. At times he is so responsive and tries so hard to do what he is asked. At other times I know he is just so frustrated he just says to heck with it or maybe he is off with the angels running through some beautiful field.
I had Leslie, the speech therapist from Burley, come back last Friday to help me with evaluating Jess’ swallow. She said she could see lots of little changes in him since her last visit in March. We decided to try another way of having him say “yes” and “no” with his hand. He opens his left hand quickly when asked so we are asking him to open his hand for yes and close it for no. It seems to be more consistent than eye blinks. She also is having me feed him bigger bites of pureed food and more at one time. It would be so wonderful to get rid of the feeding tube. She told me to work on him sticking out his tongue and puckering his lips. Voice and swallow use so many muscles we don’t even think about.
We still think we are going to wake up one morning and Jess will be back with incredible stories of where he has been. We realize that would truly be a miracle. But, don't miracles happen every day?
Happy Halloween!
Jess was able to ride the horse around cones set up in the arena this week. The volunteers all agree it is so much easier to support him. His trunk is getting stronger and his eyes are more focused straight forward. He still has to ride with the neck brace and with 4 people at his side. We are so thankful to the volunteers that show up twice a week.
We made his grandma cry the other night as she watched me ask him to kick his leg up and he responded with a couple of huge kicks with each leg while sitting in his chair. At times he is so responsive and tries so hard to do what he is asked. At other times I know he is just so frustrated he just says to heck with it or maybe he is off with the angels running through some beautiful field.
I had Leslie, the speech therapist from Burley, come back last Friday to help me with evaluating Jess’ swallow. She said she could see lots of little changes in him since her last visit in March. We decided to try another way of having him say “yes” and “no” with his hand. He opens his left hand quickly when asked so we are asking him to open his hand for yes and close it for no. It seems to be more consistent than eye blinks. She also is having me feed him bigger bites of pureed food and more at one time. It would be so wonderful to get rid of the feeding tube. She told me to work on him sticking out his tongue and puckering his lips. Voice and swallow use so many muscles we don’t even think about.
We still think we are going to wake up one morning and Jess will be back with incredible stories of where he has been. We realize that would truly be a miracle. But, don't miracles happen every day?
Happy Halloween!
Friday, October 21, 2005
October 21st, 9:00 p.m
This was an interesting week for Jess and I. Amanda was treated to a Cheryl Crow concert in Boise on Tuesday and Wednesday by her fiancee' so Jess and I hung out alone but together. We attended school on Tuesday and to be honest it was very difficult for me. All those energetic kids in the halls with so many questioning looks at Jess and I as we rolled down the halls to his three different classes. He did open his hand on the keyboard in his computer class and held a paintbrush in his art class. Jess tries so hard to participate and wants so badly to talk. I can't imagine how frustrating his world must be. We are lucky the law state he can attend school until he turns 22. At least he is around kids and feels their energy and he does get some speech, occupational and physical therapy.
Wednesday we drove to Twin Falls to attend a meeting regarding what Jess qualifies for from Medicaid. When Jess turned 18 he became an adult so we had to hire a lawyer to establish guardianship so we could make decisions for him. Medicaid has a waiver program called the Developmental Disability Waiver which is suppose to help people with disablities receive financial help with therapies and care. But, just like we found out with the insurances we purchased, they have so many rules and all of that fine print to make sure you can't recover any of what you contributed to for all of those years. It was amazing to sit in this meeting! And, nobody is really sure what the rules are but they make it clear that they can't bend them. I won't go into details but again I remind you to make sure you understand the policies you buy and beware of the system set up in our government that we all pay into. Where does all of that money go I wonder? When one door closes you just have to find another one that is open. And, trust. I liked these rules so I thought I would share them with you:
TEN RULES FOR BEING HUMAN
You will receive a body. You may like it or hate it but it is yours for the entire time...this time around.
You will learn lessons. You are enrolled in a full time informal school called life. Each day in this school you will have the opportunity to learn lessons. You may like the lessons or think them irrelevant or stupid.
There are no mistakes only lessons. Growth is a process of trial and error experimentation. The 'failed' experiments are as much a part of the process as the experiment that ultimately 'works'.
A lesson is repeated until it is learnt. A lesson will be presented to you in various forms until you have learnt it. When you have learnt it you can then go on to the next lesson.
Learning lessons does not end. There is no part of life that does not contain its lessons. If you are alive there are lessons to be learnt.
'There' is no better than 'here'. When your 'there' has become 'here' you will simply obtain another there that will again look better than here.
Others are merely mirrors of you. You cannot love or hate something about another person unless it reflects to you something you love or hate about yourself.
What you make of your life is up to you. You have all the tools and resources you need. What you do with them is up to you. The choice is yours.
Your answers lie inside you. The answers to life's questions lie inside you. All you need is to look inside and trust.
Last but not least, you will forget all of this.
Wednesday we drove to Twin Falls to attend a meeting regarding what Jess qualifies for from Medicaid. When Jess turned 18 he became an adult so we had to hire a lawyer to establish guardianship so we could make decisions for him. Medicaid has a waiver program called the Developmental Disability Waiver which is suppose to help people with disablities receive financial help with therapies and care. But, just like we found out with the insurances we purchased, they have so many rules and all of that fine print to make sure you can't recover any of what you contributed to for all of those years. It was amazing to sit in this meeting! And, nobody is really sure what the rules are but they make it clear that they can't bend them. I won't go into details but again I remind you to make sure you understand the policies you buy and beware of the system set up in our government that we all pay into. Where does all of that money go I wonder? When one door closes you just have to find another one that is open. And, trust. I liked these rules so I thought I would share them with you:
TEN RULES FOR BEING HUMAN
You will receive a body. You may like it or hate it but it is yours for the entire time...this time around.
You will learn lessons. You are enrolled in a full time informal school called life. Each day in this school you will have the opportunity to learn lessons. You may like the lessons or think them irrelevant or stupid.
There are no mistakes only lessons. Growth is a process of trial and error experimentation. The 'failed' experiments are as much a part of the process as the experiment that ultimately 'works'.
A lesson is repeated until it is learnt. A lesson will be presented to you in various forms until you have learnt it. When you have learnt it you can then go on to the next lesson.
Learning lessons does not end. There is no part of life that does not contain its lessons. If you are alive there are lessons to be learnt.
'There' is no better than 'here'. When your 'there' has become 'here' you will simply obtain another there that will again look better than here.
Others are merely mirrors of you. You cannot love or hate something about another person unless it reflects to you something you love or hate about yourself.
What you make of your life is up to you. You have all the tools and resources you need. What you do with them is up to you. The choice is yours.
Your answers lie inside you. The answers to life's questions lie inside you. All you need is to look inside and trust.
Last but not least, you will forget all of this.
Wednesday, October 12, 2005
October 12th at 12:00 p.m.
How is Jess? Jess is healthy, handsome, frustrated (I am sure) but so tolerant, responsive (sometimes), moving his left hand and foot, still eating small amounts, enjoying school (I hope), horseback riding well...and, oh, so loved.
How is his family? Struggling... A good friend told me it was ok to not have all positive good days. And, it was ok to be honest about it. So many people say to me, "I can't imagine what your day is like." I can help you with that image. Have one of the people in your life that you love and cherish more than life itself lie down on the bed. Tell them they cannot move, talk, smile, laugh or cry for 24 hours. Also make sure they are 10 inches taller and 40 pounds heavier than you. You need to figure out how to take care of every aspect of this beautiful person's life. Whatever you do to sustain your own life you must do for this person you love so much. You are also responsible for making sure he has all the right therapies, rest, nutrition, medical checkups, right amount of standing, moving in different positions to prevent skin breakdown, stimulation and protect his financial security. You have to make all of his decisions and make the best choices for his welfare. And, remember he cannot tell you how he feels, if he hurts, if he's mad, if he's tired....all you can do is to read his body language. You have had no formal training in severe traumatic brain injuries and you have no one that can really give you any solid answers of the outcome. And, everyone around you would like you to give them the answers you don't have. You just get to watch and wait. Multiply that 24 hour day by approximately 485 days and you will know what my day is like.
Do I sound suicidal? I'm not. I guess I just needed to share with you my reality, my frustration and explain why I have had such a hard time writing lately. I know everything is temporary and this too shall pass. I always try to remain positive. I am still very grateful that I can be there for my son. Jess will get better. I refuse to think any different. His family just hurts so badly and feels so helpless...sometimes it is unbearable. We want to run on the beach again with Jess, climb another mountain, sing another song, dance another dance, laugh, cry, argue with him so we can hug and make up. Will we get to do those things again?...who knows. We continue to pray and listen for the answer. Cherish all of those things you do with those you love because you never know when it will all be taken away from you in a split second.
How is his family? Struggling... A good friend told me it was ok to not have all positive good days. And, it was ok to be honest about it. So many people say to me, "I can't imagine what your day is like." I can help you with that image. Have one of the people in your life that you love and cherish more than life itself lie down on the bed. Tell them they cannot move, talk, smile, laugh or cry for 24 hours. Also make sure they are 10 inches taller and 40 pounds heavier than you. You need to figure out how to take care of every aspect of this beautiful person's life. Whatever you do to sustain your own life you must do for this person you love so much. You are also responsible for making sure he has all the right therapies, rest, nutrition, medical checkups, right amount of standing, moving in different positions to prevent skin breakdown, stimulation and protect his financial security. You have to make all of his decisions and make the best choices for his welfare. And, remember he cannot tell you how he feels, if he hurts, if he's mad, if he's tired....all you can do is to read his body language. You have had no formal training in severe traumatic brain injuries and you have no one that can really give you any solid answers of the outcome. And, everyone around you would like you to give them the answers you don't have. You just get to watch and wait. Multiply that 24 hour day by approximately 485 days and you will know what my day is like.
Do I sound suicidal? I'm not. I guess I just needed to share with you my reality, my frustration and explain why I have had such a hard time writing lately. I know everything is temporary and this too shall pass. I always try to remain positive. I am still very grateful that I can be there for my son. Jess will get better. I refuse to think any different. His family just hurts so badly and feels so helpless...sometimes it is unbearable. We want to run on the beach again with Jess, climb another mountain, sing another song, dance another dance, laugh, cry, argue with him so we can hug and make up. Will we get to do those things again?...who knows. We continue to pray and listen for the answer. Cherish all of those things you do with those you love because you never know when it will all be taken away from you in a split second.
Monday, October 3, 2005
October 3rd at 9:30 p.m.
I don't have much news. It was homecoming week here last week and it was a tough one for me for some reason. Most of Jess' old friends have gone away to college and I guess it just doesn't seem right that Jess is not with them.
I do want to thank everyone that is still visiting this site. Your good thoughts and prayers will always be very appreciated. It is almost 1 year and 4 months since we started this site and I am amazed at how many people still are keeping in touch. We love you all and wish only the best for you too.
I do want to thank everyone that is still visiting this site. Your good thoughts and prayers will always be very appreciated. It is almost 1 year and 4 months since we started this site and I am amazed at how many people still are keeping in touch. We love you all and wish only the best for you too.
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