Love,
Pam, Chris & "Jess"
Wednesday, July 3, 2013
Happy Birthday, Jess!
Today is Jess' 26th birthday. He is so excited that his brother, Joey and wife Angela and his two nephews (Breck and Blake) and his sister Jamie and his niece (Jahara) will all be here to spend the day and weekend with him. His 93 year old grandma will also be here tomorrow to give him a big hug. Happy Birthday, my son!!!
I wanted to thank everyone so much who is visiting this site and who sent us such heart felt messages. I am sorry I have not updated this site on a regular basis. I do know there are many people that care about Jess out there and wonder how we are all doing. I guess sometimes this is such a lonely journey that I forget how many people do care. And, I know everyone has their own challenges that are just as trying as ours. Anyway, thank you again and we hope everyone has a fun and safe 4th of July!
Love,
Pam, Chris & "Jess"
Love,
Pam, Chris & "Jess"
Monday, June 17, 2013
We are still here - nine years later!
I don’t know why I decided to write on Jess’ website today. I guess every year at this time I remember how important it was for me to tell everyone how he was doing and “vent” by writing accounts of our day. And, just knowing people were there to support us and cared about what was happening to our lives helped tremendously. Now, I doubt anyone even visits this site. Life goes on and we forget and move on. Our lives are so busy!
It has been 9 years today! Nine years of transferring, dressing, worrying, stopping over 250 seizures, blending almost 10,000 breakfast, lunch and dinners for his feeding tube, organizing therapies, dealing with insurances, bathing and helping him with personal care, taking turns sleeping by his side and losing way too much sleep, transporting, escaping in the motor home with him for a little different view, praying, crying, rejoicing at the smallest gains and most of all loving him more than he will ever comprehend.
With all that said, most of the time, we do alright. Chris and I have a system and we couldn’t do it without each other. We beat the statistics, so far, we are still together. We find little bits of freedom and actually have a date night once a week. We have not left Jess’ side for nine years except for a few hours at a time when we have our wonderful caregiver, Dora, here. Even then, we are always on edge and always waiting for a phone call saying that we need to rush home.
They say, “God doesn’t give you more than you can handle”. Why does “he” give anyone something so tragic to handle? They also say, “Everything is for a reason.” I haven’t found that reason yet. I wish I could trade places with him. But then he would hurt as much as I do. If I stay in today and not think about the future or curse the past I do ok. It’s a lot of work!
If you did check this website today, thank you! If not, it’s ok. It has been a long, long time. If Jess could talk I am sure this would be something he would say Click Here (watch it to the end, you won't regret it).
It has been 9 years today! Nine years of transferring, dressing, worrying, stopping over 250 seizures, blending almost 10,000 breakfast, lunch and dinners for his feeding tube, organizing therapies, dealing with insurances, bathing and helping him with personal care, taking turns sleeping by his side and losing way too much sleep, transporting, escaping in the motor home with him for a little different view, praying, crying, rejoicing at the smallest gains and most of all loving him more than he will ever comprehend.
No, Jess is not talking, walking, eating hamburgers, using his arms and hands, playing basketball, holding his head up, crying, falling in love or… telling me where he has been all these years. He is using his eye gaze computer a little better, trying to make sounds, showing some aggression once in awhile, trying to take a step in his walking sling, riding the Quadriciser and not especially liking it, and smiling on occasion.
We won’t give up but we have accepted our reality. I am still always searching for the latest cures for traumatic brain injuries. We have taken him to clinics in Salt Lake, Cleveland, Austin, Los Angeles, Bakersfield, Boise, Phoenix and Minneapolis to try something new. Nothing seems to make a big difference. We go with a lot of hope and come home discouraged.
How are we? We are tired, frustrated, hurt, confused and sometimes down right mad that we lost such a beautiful, talented, loving, wonderful son to such a horrible accident. And, we can’t take it back. We can’t take back the few seconds it took to leave him in this condition. We can only try to find some joy in each day, love our new son and keep getting up.
With all that said, most of the time, we do alright. Chris and I have a system and we couldn’t do it without each other. We beat the statistics, so far, we are still together. We find little bits of freedom and actually have a date night once a week. We have not left Jess’ side for nine years except for a few hours at a time when we have our wonderful caregiver, Dora, here. Even then, we are always on edge and always waiting for a phone call saying that we need to rush home.
They say, “God doesn’t give you more than you can handle”. Why does “he” give anyone something so tragic to handle? They also say, “Everything is for a reason.” I haven’t found that reason yet. I wish I could trade places with him. But then he would hurt as much as I do. If I stay in today and not think about the future or curse the past I do ok. It’s a lot of work!
If you did check this website today, thank you! If not, it’s ok. It has been a long, long time. If Jess could talk I am sure this would be something he would say Click Here (watch it to the end, you won't regret it).
We wish you the best!
“In the birth of understanding and compassion, there will be love... and in the birth of love, there will be healing.”
-Dr. Deepak Chopra
Monday, May 9, 2011
May 9, 2011
Amazing! I just got the urge to update Jess' website. We are in Tustin, CA at a rehab center called High Hopes. We have been here for one week. I found it on the internet when I was looking for Quadricisers. They have 10 of them so we decided to come down and check them out before we make an attempt to purchase one. They are awesome and this place is truly a gift for anyone with a brain injury. The people that run it are so positive and they know how to really work someone who has been left behind.
We are still on the path of looking for a miracle. Jess is healthy, strong, a little too skinny, tall and has one too many seizures for our liking. We have tried so many different things and have so many more to try I'm sure. It is pretty sad to see just how many people there are walking the same path we are and having the same but different challenges. I am just so grateful I can be by my son's side and help him through this journey. Many are not so fortunate!
Jess has a new computer. Yes, I finally got him an eye gaze computer in which he can operate it with his eyes. Not consistently "yet" but we do get some pretty amazing results at times. I just want to talk to him so bad to see what his world consists of and how he is feeling. I feel he is comprehending more that we give him credit for andhe just can't find a way to respond back.
Well, I am not sure who checks this webite anymore but it is a good way for me to keep a history of our adventures. If you know of someone struggling with a brain injury or other challenges I would recommend you check out High Hopes!
With high hopes for Jess,
Pam, Chris & Jess
We are still on the path of looking for a miracle. Jess is healthy, strong, a little too skinny, tall and has one too many seizures for our liking. We have tried so many different things and have so many more to try I'm sure. It is pretty sad to see just how many people there are walking the same path we are and having the same but different challenges. I am just so grateful I can be by my son's side and help him through this journey. Many are not so fortunate!
Jess has a new computer. Yes, I finally got him an eye gaze computer in which he can operate it with his eyes. Not consistently "yet" but we do get some pretty amazing results at times. I just want to talk to him so bad to see what his world consists of and how he is feeling. I feel he is comprehending more that we give him credit for andhe just can't find a way to respond back.
Well, I am not sure who checks this webite anymore but it is a good way for me to keep a history of our adventures. If you know of someone struggling with a brain injury or other challenges I would recommend you check out High Hopes!
With high hopes for Jess,
Pam, Chris & Jess
Thursday, June 17, 2010
SIX YEARS AGO TODAY!
I am trying to just acknowledge this day as a day to be grateful for all the wonderful people that have come into and surrounded our lives since Jess' accident 6 years ago. We have been so lucky to have the people who support Jess in his recovery stay by his side for so many years. John (OT), Tracy (Speech), Joan (acupuncture) and Beth (cranial sacral) have been with us since we came home from the hospital. We are extremely thankful for their devotion and love to our Jess.
We also have three part time caregivers now that are so wonderful and take such good care of Jess. Bryan has been with us a year now. We appreciate him more than he will ever know. We just hired two more very compassionate caregivers, Dora and Maura a couple of months ago. It has been a bit of a struggle to let go but Chris and I can finally feel at ease going to work and getting some things done around the house without keeping one eye on Jess.
Life seems to go on and six years has gone by pretty fast it seems although not without many mountains to climb. We appreciate the extra help but we are still waiting and praying that something will change for the better. Six years ago today was the day our son left his physical life and emerged himself into a dream world where hopefully he is experiencing far more joy than we could ever imagine.
Thanks for checking in and still supporting us with your thoughts!
We also have three part time caregivers now that are so wonderful and take such good care of Jess. Bryan has been with us a year now. We appreciate him more than he will ever know. We just hired two more very compassionate caregivers, Dora and Maura a couple of months ago. It has been a bit of a struggle to let go but Chris and I can finally feel at ease going to work and getting some things done around the house without keeping one eye on Jess.
Life seems to go on and six years has gone by pretty fast it seems although not without many mountains to climb. We appreciate the extra help but we are still waiting and praying that something will change for the better. Six years ago today was the day our son left his physical life and emerged himself into a dream world where hopefully he is experiencing far more joy than we could ever imagine.
Thanks for checking in and still supporting us with your thoughts!
Saturday, April 17, 2010
We are in Austin, Texas
Hi everyone,
We are on another adventure to Austin, TX. We had a nice drive down here and we are doing well here so far. It did take us some time to figure out where we were going and how to beat the traffic. We sure forget about traffic. It blows me away how many cars there are in a city. We did go for a two hour walk around Lady Bird Lake, found a Costco and a Whole Foods grocery store. I do like it here. It seems like an artsy city with lots to do. They have festivals every weekend of some sort. The weather is unbelievable. It has been cloudy a lot but warm and a little humid which is great for the dry skin. It was in the high 70's yesterday.
We came here so Jess could try some biofeedback therapy. We met with a neurologist and we both really liked him and the therapists are wonderful. The neurologist, Dr. Heinze went to a seminar with Dr. Brucker (the guru of biofeedback) 20 years ago and about 6 years ago called him to see ask him about his successes with neuromuscular biofeedback. He was impressed with the results so he decided to send two physical therapists to Florida to train with him. It is unusual to meet a neurologist who actually dares to venture off of the strict medical protocol and try alternative therapies.
There are only 3 or 4 Neuromuscular Biofeedback centers in the US. The Brucker Method uses a learning procedure known as operant conditioning, which teaches an individual to access and use existing neural cells in the brain and/or spinal cord for restoration of function. The EMG biofeedback process is used to train alternative undamaged cells of the brain to take over the
tasks of the damaged cells. Candidates it can help are people with physical disabilites resulting from spinal cord injury, head trauma, stroke, cerebral palsy, orthopedic injuries or non-progressive central nervous system disorders.
Unfortunately, Dr. Brucker died two years ago but our two therapists, Bob and Amy trained with him extensively and are continuing his work. I guess his wife is continuing with the Brucker Institute in Miami and there are also therapists doing it in Chicago.
The good news is Jess' muscles are responding. The electrodes pick up very fine measurements of motor signals to several muscle groups and Jess has muscles firing that we can't detect with the naked eye. I guess the brain needs to be reminded they can function. They have tested both of his arms and hands, his neck and shoulders and his trunk so far. Their goal is to get some neck and trunk stability and arm functioning by creating pathways to his brain. Once the pathways are established supposedly the brain never forgets. But it is a "use it or lose it" scenario. So, we will continue to work on the exercises and come back in 6 months to retrain.
The neurologist told us a story of a man who sat motionless in his wheelchair for years and after the biofeedback treatments (not sure how long) he now communicates on a computer and can play video games. We try not to get our hopes too high but this neurologist was the first one we have seen that hasn't been "so honest that it hurt". He actually had ideas to help give Jess a better quality of life and us some hope. I always felt the way to get Jess back is either through a computer, art or music. Wouldn't it be unbelievable if he could communicate on a computer some way. Dr. Heinze also seemed hopeful that Jess could use some sort of laser system to activate a computer with his head or maybe we can get a finger to poke keys on a keyboard. There are so many new ideas being researched in assistive technology. It drives me crazy not knowing there are possibilities out there that I don't know exist. I hope this place will be a good resource for me now.
Sorry for rambling but I thought you might be interested or can spread the word to someone you know that may get good results. Other than our day to day chores and therapies we are busy like always. We hope to check out some music festivals, museurms, parks or maybe drive to the coast this weekend. We sure love this motorhome. It has really changed our lives. We're really glad we pulled the Honda here. Driving in this traffic is a breeze compared to maneuvering around the city in the motorhome.
The RV park is nice. It is surrounded with Oak trees and the birds make it sound like we are on a tropical island. We have all the windows open, I actually get to wear flip flops and Jess' feet are finally warm. Chris is out exploring as we speak. He is trying to find a running route. So, he just got back and said he wants to talk to the manager to see if he can borrow a riding lawnmower and make a "trail" through the nearby Oak Forest! Go figure...he is the trail guy!
Hope you are enjoying your day. It looks like rain here tomorrow. We have two appointments everyday and by the time we get home we are wiped out. Thanks for checking in.
Love,
Pam, Chris & Jess
We are on another adventure to Austin, TX. We had a nice drive down here and we are doing well here so far. It did take us some time to figure out where we were going and how to beat the traffic. We sure forget about traffic. It blows me away how many cars there are in a city. We did go for a two hour walk around Lady Bird Lake, found a Costco and a Whole Foods grocery store. I do like it here. It seems like an artsy city with lots to do. They have festivals every weekend of some sort. The weather is unbelievable. It has been cloudy a lot but warm and a little humid which is great for the dry skin. It was in the high 70's yesterday.
We came here so Jess could try some biofeedback therapy. We met with a neurologist and we both really liked him and the therapists are wonderful. The neurologist, Dr. Heinze went to a seminar with Dr. Brucker (the guru of biofeedback) 20 years ago and about 6 years ago called him to see ask him about his successes with neuromuscular biofeedback. He was impressed with the results so he decided to send two physical therapists to Florida to train with him. It is unusual to meet a neurologist who actually dares to venture off of the strict medical protocol and try alternative therapies.
There are only 3 or 4 Neuromuscular Biofeedback centers in the US. The Brucker Method uses a learning procedure known as operant conditioning, which teaches an individual to access and use existing neural cells in the brain and/or spinal cord for restoration of function. The EMG biofeedback process is used to train alternative undamaged cells of the brain to take over the
tasks of the damaged cells. Candidates it can help are people with physical disabilites resulting from spinal cord injury, head trauma, stroke, cerebral palsy, orthopedic injuries or non-progressive central nervous system disorders.
Unfortunately, Dr. Brucker died two years ago but our two therapists, Bob and Amy trained with him extensively and are continuing his work. I guess his wife is continuing with the Brucker Institute in Miami and there are also therapists doing it in Chicago.
The good news is Jess' muscles are responding. The electrodes pick up very fine measurements of motor signals to several muscle groups and Jess has muscles firing that we can't detect with the naked eye. I guess the brain needs to be reminded they can function. They have tested both of his arms and hands, his neck and shoulders and his trunk so far. Their goal is to get some neck and trunk stability and arm functioning by creating pathways to his brain. Once the pathways are established supposedly the brain never forgets. But it is a "use it or lose it" scenario. So, we will continue to work on the exercises and come back in 6 months to retrain.
The neurologist told us a story of a man who sat motionless in his wheelchair for years and after the biofeedback treatments (not sure how long) he now communicates on a computer and can play video games. We try not to get our hopes too high but this neurologist was the first one we have seen that hasn't been "so honest that it hurt". He actually had ideas to help give Jess a better quality of life and us some hope. I always felt the way to get Jess back is either through a computer, art or music. Wouldn't it be unbelievable if he could communicate on a computer some way. Dr. Heinze also seemed hopeful that Jess could use some sort of laser system to activate a computer with his head or maybe we can get a finger to poke keys on a keyboard. There are so many new ideas being researched in assistive technology. It drives me crazy not knowing there are possibilities out there that I don't know exist. I hope this place will be a good resource for me now.
Sorry for rambling but I thought you might be interested or can spread the word to someone you know that may get good results. Other than our day to day chores and therapies we are busy like always. We hope to check out some music festivals, museurms, parks or maybe drive to the coast this weekend. We sure love this motorhome. It has really changed our lives. We're really glad we pulled the Honda here. Driving in this traffic is a breeze compared to maneuvering around the city in the motorhome.
The RV park is nice. It is surrounded with Oak trees and the birds make it sound like we are on a tropical island. We have all the windows open, I actually get to wear flip flops and Jess' feet are finally warm. Chris is out exploring as we speak. He is trying to find a running route. So, he just got back and said he wants to talk to the manager to see if he can borrow a riding lawnmower and make a "trail" through the nearby Oak Forest! Go figure...he is the trail guy!
Hope you are enjoying your day. It looks like rain here tomorrow. We have two appointments everyday and by the time we get home we are wiped out. Thanks for checking in.
Love,
Pam, Chris & Jess
Friday, March 19, 2010
Is it Spring yet?
We have a lot going on as usual in our household. We have been interviewing for caregivers again. We had 20 calls the first couple of days the ad appeared in the newspaper. Last time we advertised we only received two or three calls so it shows how many people are truly out of work. We have five good candidates. We love our current caregiver, Bryan, but he had to cut back to one day a week this winter. He is working towards his nursing degree and license as an RN and the classes and studying are pretty intense. I am grateful that we have found a couple of good people that seem to want to help us and Jess.
Jess is still struggling with seizures and unfortunately it sets him back each time he has one. We increased his medicine but it comes with ramifications. It takes him quite awhile to get used to the increase. I have made an appointment with a neurologist in Boise that specializes in seizures so I hope he can help us. Our appointment isn't until the end of May. I also made an appointment with a rehab doctor in Twin Falls for the first of April.
We are also looking into going to Austin, TX so Jess can try some. A friend we met in California when we took Jess to the Centre for Neuroskills a few years ago told us about the biofeedback they are doing that has really helped their son who also has a bad brain injury. They also have been using a machine called a Quadriciser. It is pretty interesting and sounds like it has helped many people. Check out the link and the testimonies. Unfortunately, it is very expensive so I told Chris he needs to build one for Jess. If anyone could figure it out, he could.
The amount of avenues we get directed to is endless. Another friend brought me an article about a new trial just starting where they are giving traumatic brain injury survivors progesterone. It seems to really help with their recovery. Unfortunately for Jess, they recommend it be given at the onset of the injury. Hopefully if it does work successfully, it could become a protocol used in the emergency room.
We are all anxious for Spring. Jess and I went for a walk outside last weekend. We could hear the new sounds of birds chirping and the smell of things trying to wake up. It is still cold though, we still have snow on the ground and it's not quite here yet but we are encouraged and know it won't be long.
We all send a hug and a thank you for checking in.
Jess is still struggling with seizures and unfortunately it sets him back each time he has one. We increased his medicine but it comes with ramifications. It takes him quite awhile to get used to the increase. I have made an appointment with a neurologist in Boise that specializes in seizures so I hope he can help us. Our appointment isn't until the end of May. I also made an appointment with a rehab doctor in Twin Falls for the first of April.
We are also looking into going to Austin, TX so Jess can try some. A friend we met in California when we took Jess to the Centre for Neuroskills a few years ago told us about the biofeedback they are doing that has really helped their son who also has a bad brain injury. They also have been using a machine called a Quadriciser. It is pretty interesting and sounds like it has helped many people. Check out the link and the testimonies. Unfortunately, it is very expensive so I told Chris he needs to build one for Jess. If anyone could figure it out, he could.
The amount of avenues we get directed to is endless. Another friend brought me an article about a new trial just starting where they are giving traumatic brain injury survivors progesterone. It seems to really help with their recovery. Unfortunately for Jess, they recommend it be given at the onset of the injury. Hopefully if it does work successfully, it could become a protocol used in the emergency room.
We are all anxious for Spring. Jess and I went for a walk outside last weekend. We could hear the new sounds of birds chirping and the smell of things trying to wake up. It is still cold though, we still have snow on the ground and it's not quite here yet but we are encouraged and know it won't be long.
We all send a hug and a thank you for checking in.
Thursday, February 11, 2010
February 11, 2010
Again, it has been a long time since I have updated Jess' website. I am not sure if anyone even checks it anymore. It has been 5 1/2 years since his accident and he is still not walking and talking as we were so sure he would be doing by now. He just had a bout with pneumonia that immediately followed a seizure. We gave him antibiotics for a week and luckily it seems to have done it's duty. He was having small weird seizures for two days with a fever so we knew something was up. We were very worried and are so thankful in one respect that we could point it to a cause. The exray showed fluid in his left lung.
Jess is still doing all of the therapies and a couple of times this year he has gone up skiing on an adaptable ski sled with his dad and caregiver, Bryan. It seems like he enjoys the thrill of being on snow again. He so loved snowboarding. We're looking forward to watching the Winter Olympics this weekend.
I am still on my research journey of looking for new advancements in ways to help those with brain injuries. It is so complex, expensive and overwhelming. Our next venture may be to take Jess to a rehab facility in Phoenix. His sister Jamie is living there now so we could be close to her and in warm weather (the winters are so long and hard on Jess and I). I think he needs a little change and we need some new ideas. After 5 years the medical world doesn't have much hope in his recovering but what in the heck are we suppose to do with that information! I still hope that through music, art, computers or some passionate person who has that special connection with Jess we can find a sure way of communicating with him.
We are still so thankful for all of those who have not given up on him and for those that keep positive thoughts flowing our way. Chris and I are tired, frustrated, confused and so sad a lot of the time to be honest. We did not get to enjoy all of those fun years of watching him grow up into that awesome guy who had so many dreams and plans for his future. But most of the time we are ok and just thankful that he is our awesome son and that we are able love him more than anyone could imagine. Life seems to give all of us different challenges and I guess it's how we deal with them that matters.
Thanks for checking in and we wish all of you a better 2010!
Jess is still doing all of the therapies and a couple of times this year he has gone up skiing on an adaptable ski sled with his dad and caregiver, Bryan. It seems like he enjoys the thrill of being on snow again. He so loved snowboarding. We're looking forward to watching the Winter Olympics this weekend.
I am still on my research journey of looking for new advancements in ways to help those with brain injuries. It is so complex, expensive and overwhelming. Our next venture may be to take Jess to a rehab facility in Phoenix. His sister Jamie is living there now so we could be close to her and in warm weather (the winters are so long and hard on Jess and I). I think he needs a little change and we need some new ideas. After 5 years the medical world doesn't have much hope in his recovering but what in the heck are we suppose to do with that information! I still hope that through music, art, computers or some passionate person who has that special connection with Jess we can find a sure way of communicating with him.
We are still so thankful for all of those who have not given up on him and for those that keep positive thoughts flowing our way. Chris and I are tired, frustrated, confused and so sad a lot of the time to be honest. We did not get to enjoy all of those fun years of watching him grow up into that awesome guy who had so many dreams and plans for his future. But most of the time we are ok and just thankful that he is our awesome son and that we are able love him more than anyone could imagine. Life seems to give all of us different challenges and I guess it's how we deal with them that matters.
Thanks for checking in and we wish all of you a better 2010!
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