Happy Holidays

I received this in an email today and liked it so much I wanted to share it with you.

Giving and Receiving

As humans, we are often creatures of excess. Bigger is better (size does count, doesn't it?), more is better, and excess is even better than more. The biggest house, the tallest tree, the most gifts under the tree; we may find ourselves at times in a battle with the universe, one of your own making, to prove that in our excess we are more generous, more successful, - and more mortal.

Surround ourselves with things and you stave off mortality; this is how the thinking seems to unfold for some. It is as if death will be unable to find us if we are hidden beneath a layer of material things.

During this holiday season and especially on the day that many celebrate the birth of Christ, on a day that has become a pageant of giving and receiving, take a few moments to consider what is "real." If you stripped down your life to what is most important, most real, what would be left? Relationships. Not houses. Not Cars. Not those ribboned gifts under the tree. People would be left. Knowing this, celebrate your relationships today: their birth, their existence, their importance in your life.

Tell your loved ones what they mean to you today. Celebrate the joyful, hopeful essence of human relationship; honor it by giving a voice to how you feel.

We would like to express to you how important it really is to share how you feel with those you love. There is so much we wish we could have said to Jess before he got hurt. I would give anything to have a conversation with him again. I do feel blessed that we did have many heart to heart discussions. But now, I miss those discussions so much. I miss his voice. I have his message saved from his cell phone that I can play whenever I think I have forgotten the tone of his voice.So, please let those you love know how special they are today. Tell them how much they are loved this holiday season. There is no finer gift!

December already!

I don't know where November went. We have been pretty busy with Jess home full time. We are doing all of his therapies here at the house except for horseback riding, of course. John, our OT, is helping us twice a week to get Jess in the walking sling. He has successfully moved his left leg but it takes so much effort. Tracy, our Speech therapist, is getting Jess to move a joystick to point at words. At first he could not control it but now he is moving it slowly to control where the pointer goes. Chris is still standing Jess whenever he can to keep his bones strong. I am up to 62 sessions on the neurofeedback program. We haven't had a seizure since November 11th. I can't get too excited because he usually has at least one a month. But I can sure hope for the best.

We are seeing a new doctor, Dr. Archie, here in town that also does acupuncture and prescribes Chinese herbs. We are starting Jess on some of the herbs to help the seizures next week. He is also doing a nutritional evaluation to make sure Jess isn't missing something from his diet. It is nice to have an alternative to the hard core seizure drugs that make him so non-responsive.

We had a nice Thanksgiving. Mom came over for a few days and Claudia, Jess' aunt, came over for dinner. Jess was excited to see them both. Holidays are still tough for us. I wonder if it ever gets easier.

We have kind of settled into a routine. Not exactly an easy one but it works. We keep waiting for Jess to just start talking or hold his head up or move his arms and legs without being asked. We do get that smile once in awhile, two blinks for yes and I still get three blinks for "I love you". We still can't help but ask "why" a lot and we still don't really get an answer. We have sure learned to appreciate the small things though.

Thanks for checking in...Pam, Chris & Jess

P.S. We are having a healthy chocolate tasting party tomorrow. It will be fun to see some friends, laugh and eat chocolate. We don't get out much so as I said the little pleasures are important. Stop by around 2:00 if you are in the neighborhood and learn how good chocolate can be for your health. We will have some packaged for Christmas gifts if you need an idea for someone. Click on our website Xocai Chocolate if you are curious. Christmas is only 18 days away! Oh my!

Happy Halloween!

Carson, Curtie & Jess many years ago!

Jess is doing fine. We have been doing the neuro feedback therapy on him and so far so good. We have even lowered the seizure medicine 200 mg. It's a little scary but Jess is so much more aware the lower the dose of medicine. He never liked feeling altered and always wanted to be "on top of his game".

I found a wonderful caregiver, Jaime, but unfortunately she is a busy girl and can only give us 6 hours a week. I talked her also into stopping by two mornings a week on her way to another client to help me get Jess dressed. We are very happy with any help we can get.

We also will get to have our therapists come to the house during the winter instead of me driving Jess 14 miles one way once or twice a day on snowy roads.

Brandie stopped by with her beautiful little baby girl, Riley. She is a wonderful mom and Jess lit up when he saw her. Congratulations, Brandie!

Have a Happy Halloween!

Home safe!

I know it has been too long since I updated Jess' website. We are home from MN and have been trying to get back to normal. We were gone a month and actually did pretty well traveling across country with our van pulling the toy hauler. We made a few side trips through Yellowstone, the Badlands and over the Beartooth Mountain pass (it was beautiful and scary). Jess weathered the ride and we tried not to go too much over 300 miles a day. We had to stop often to reposition him and get him out of his chair on to the back seat of the van which makes into a bed. We did enjoy being out on the road. We also really enjoyed visiting the kids and grandkids in Minneapolis. We did get do a few fun events such as a trip to the Minneapolis State Fair, to an apple farm, to a huge mall, to a beautiful city park and to a large motorhome sales lot. Dreaming, of course!

The doctor we spent two hours a day with was wonderful. He was so positive and truly hopes that the neurofeedback we did and continue to do with Jess will help. Here is an explanation of what neurofeedback is all about:

When studying brain activity, there are patterns of under-activation, over-activation or disturbed coordination, which have been found to be common to many kinds of symptoms as shown in brain imaging studies. These patterns often emerge with attention deficit disorders, anxiety disorders, autism spectrum disorders, seizures, and cases of depression and learning disabilities. Such behavioral patterns are created and maintained at deep neuropsychological levels. Neurofeedback EEG is a type of brainwave training that can be used to effect change in these patterns.

Neurofeedback (also known as neurotherapy) doesn't actively do anything to the brain - rather it seems to provoke the brain to just do something different, and to recover its natural flexibility of functioning. The brain finds its own path to optimal self-regulation. Neurofeedback is safe and its effects are long-lasting.

In simple terms, EEG neurofeedback therapy is a method to retrain a person's brainwave pattern through the use of sophisticated biofeedback machines. In addition, trained and skilled biofeedback therapists help the client to learn and practice the techniques that will help them to manage and control their brain activity. This is done by showing the patient the displays on the biofeedback equipment, which is what translates the brainwave activity into charts and graphs, and in some instances light and sound feedback.

With neurofeedback EEG training and simple energy control techniques, people have been able to improve their health, sharpen their minds, and improve numerous health conditions, as well as enjoying increased joy and vitality. Biofeedback therapy can also promote high levels of wellness, can improve immune function, can help to reverse certain types of disease and illness, and can support peak performance.

Also called electroencephalographic biofeedback, it makes use of computerized electronic measurement devices, or electrodes, that are placed on the surface of the head in order to monitor brainwave activity. The computer then "feeds back" important information relevant to the activity of the brain and the condition that the person wants to improve.

Neurofeedback EEG electrotherapy can thereby restore homeostasis in the person's system in a relatively short period of time. Many people report that they notice changes after their first treatment. However, for some people it takes repeated biofeedback therapy sessions to detect the desired improvements. In all cases, in order to enjoy lasting changes, the person should expect to go through ten to twenty sessions. This usually provides a sufficient amount of time to properly receive neurofeedback training, under the supervision of a biofeedback therapist, so that eventually they can control and manipulate their brainwave activity, even when there is no biofeedback device available to rely on for the real-time feedback.

Training the brain to function at its maximum potential through neurofeedback EEG treatments is quite similar to the way the physical body is trained, toned and maintained. But, instead of training muscles, the brain is being trained through exercises that develop the neural pathways. This in turn allows the brain to function better, in terms of concentration and focus.

We are using a program on Jess everyday for one hour and will increase to two hours when we get organized. We think Jess is having some side effects to the new seizure medicine Keppra that we have him on. It is so hard to know what to do and since Jess can't really tell us how it makes him feel we just have to go by his body language. I can't tell you how frustrating that can be. We do know that since he has been on seizure medicine it has changed his ability to respond and progress. Hopefully, we will be able to decrease and eliminate it soon.

Without school this year, we are working out a new schedule of therapy for Jess. He is still horseback riding two days per week thanks to the wonderful Sagebrush Arena. We still have John (OT) and Tracy (Speech) working on improving his abilities. We love them both. John and I were getting Jess into his standing sling before we left (he was even trying to take some steps) so we will try that again at least once a week. We also have Acupuncture and Cranial Sacral therapy once a week thanks to Joan, Beth, Denise and Jolinda (we thank and love you guys so much). Chris continues to stand Jess 3 -4 times per week and always wrestles with him and tries to make him laugh in between all the caregiving duties.

As for me, I am continually trying to organize everything, constantly communicating with insurances, transporting, taking him for walks, cleaning, reading to, talking to, laughing and crying with Jess. I hope to start doing some art therapy on the computer with him using a joystick this week and we always do music therapy, eye tracking, range of motion and have him listen to some good inspirational tapes. I never take my eyes off of him for very long. I care for Jess most of the week while Chris works and we both do the nights and weekends. Chris tries to give me a break as often as he can. It is ongoing, exhausting, rewarding, heartbreaking and we are constantly entering the unknown. But, we just have to keep going!

We are still looking for a caregiver and companion as I mentioned a few blogs ago. We are selling tasty healthy chocolate as a side job. If you are interested, check out our website http://mxi.myvoffice.com/pammatey/index.cfm. And, of course, we are now gearing up for winter. We have already got a little snow in the last week and I am sure I am not ready! Thanks for checking in...enjoy the fall.

Matey's in Minneapolis

We are currently in Minneapolis. We decided to take Jess to a doctor who specializes in Neuro and Biofeedback therapy. It has been a very positive decision so far and we look forward to the possible improvements we may see in Jess. It is not a quick fix as we know nothing is but the doctor is encouraging and we appreciate his positive attitude. The best news we have gotten is that Jess has a lot of brain activity. It is just a bit scattered and unbalanced. We will keep you updated as things progress.

We have not heard from the Cleveland Clinic so we do not know if Jess is still being considered for the brain stimulation study.

This trip is partially possible because of the fund raisers the kids did for Jess last year and we are very thankful to them. We miss school and all of the wonderful people that were there for Jess.

We will continue to try new things and search for options to help Jess recover and always appreciate all of your prayers and positive thoughts in our journey.

It has been awhile

We have been pretty busy taking care of Jess and trying to work and keep up with every day events. We have not found a caregiver yet.

Jess has been struggling with seizures. We have changed his medicine and hope it will help. We are also looking into neurofeedback and biofeedback in Florida or Minneapolis to help with both seizures and muscle movement. I have been doing a lot of research. My interest excelled when I was contacted by a wonderful family of a boy we met in California 2 years ago. Jared, their son, was a lot like Jess and had also suffered his brain injury in a car accident. Here is his story:

Jared
Jared suffered a traumatic brain injury with diffuse axonal shearing (same thing Jess has) 4 1/2 years ago on his 17th birthday in an auto accident. He was in a coma for 3 -4 weeks which he came out of very slowly. He had very limited movement on his left side and none on his right, he could not regulate his temperature or heart rate, he could not swallow any food or drink, and he could only communicate with eye blinks.

After 3 years of rehabilitation and therapy, he had improved some. He definitely retained his long term memory, his sense of humor, and most cognitive processing as far as we can tell, but he still could not walk, talk, or care for himself. He constantly struggled just to keep his head up and had to be strapped into all chairs. He could use his left side somewhat, could sign yes and no with his left hand, could eat pureed foods, and gained the strength and endurance to live at home with round the clock care and go on outings. Insurance slowly dropped him from all therapies since their was not enough "significant progress".

After attending the Brucker Clinic in Florida for three weeks, Jared had such improved trunk and head control that his therapists and family were amazed. This made everything so much easier! We no longer had to hold his head for him, and he was sitting up in a regular desk chair for 10 minutes unassisted before we left the clinic. After continuing to practice with the newly discovered pathways, Jared no longer needed shoulder straps in his wheelchair or any straps in his shower or toilet chair. He also continued to work on his quadriceps and was able to transfer with less assistance and begin to take steps while remaining upright. We were approved to begin both physical and occupational therapies again which helped strengthen the muscles that the Brucker Clinic helped Jared find.

Upon our second visit to the clinic 6 months later, Jared had increased his abilities in all of the areas he had worked on previously so he was able to move forward. It has only been a few weeks since this last visit, and he is already able to move his right side with effort, is no longer needing his leg braces, and can close his lips and bite down for sustained periods.

We are now working on balancing while standing independently using a walker. This is difficult since so many muscle groups are involved, but Jared enjoys doing it and tries hard. We can feel many muscle groups kicking in that did not use to, and he is self correcting his balance. He rode a horse last week with minimal assistance and plans to continue once per week to strenthen his trunk muscles.

We know there will be more improvements to report soon as we work to strengthen these new pathways.No one else was able to move Jared forward at this point. The Brucker Clinic opened up the possibilities for Jared again. Not only do therapists believe in his newly found progress, but more importantly Jared believes. He goes into that clinic ready to work and comes home with new abilities and renewed hope. Jared has a long way to go, but Dr. Brucker gave him a road to get there when no one else could.

We are so grateful that we received another avenue to explore to help Jess. Thanks for checking in...we will be back.

Nice birthday party!

We had a nice birthday party for Jess with 15 of our friends. Unfortunately, Jess has lost touch with all of his old friends so he got to celebrate with our wonderful friends. Two of the guys Jess grew up with did call to wish him a happy birthday. I am sure it made his day. I let him listen to their message several times and he would just smile. Jess even blew out one candle.

It was Brandie's last day on Jess' birthday so we said good-bye and wished her the best with her new addition they will be having in September. I know Jess misses her and so do we. We are looking for her replacement. We are actually looking for two different people. Here are descriptions of both positions:

Personal Care Assistant

Looking for a reliable, non-smoking, patient, caring and honest individual to assist parents with disabled son. Must have a compassionate heart and interest in helping with his physical and cognitive rehabilitation and be able to cope with the physical demands of the job. CNA license preferred. CPR & 1st aid required. Flexible hours with hourly wage dependent on experience & qualifications. Email twohelpers@gmail.com for job description, details, questions and application or call 208-788-4816.

Companion

Looking for a caring, patient, non-smoking individual with an interest in assisting a 21 year old man with multiple disabilities. Need someone 1-2 flexible hours a day or evening to do various activities such as reading to him, helping him access computer learning programs, initiating art projects, playing games, helping with range of motion exercises or spending time outdoors. Email twohelpers@gmail.com for an application or with questions or call 208-788-4816.

If anyone knows of someone who might be interested, please pass on the info.

We also had a nice 4th of July weekend. I went to get my mom so she could be here for Jess' birthday. Jess gave her a big smile when he first saw her. I am sure after her being around him for 21 years he does miss her. We all do. We also took mom & Jess to watch the fireworks on the bike path. The next day we went for a ride up north and stopped to visit some friends who were camping. The wild flowers were beautiful! Summer is going by fast...I hope you are all making the most of it. We will be shoveling snow before we know it!

End of June

Not much new on the home front! We did get Jess in the new sling today and it was very encouraging. We didn't get the one we thought we ordered that was in the picture but we decided to try this one anyway. We didn't put too much weight on Jess' feet as he hung upright from the ceiling lift. We encouraged him to try to move his legs. He tried so hard to move them and with a lot of work initiated a little forward movement. It was great to see that he could send those messages to his legs. I plan on getting him in it at least every other day, if not every day. It is quite an endeavor getting him into it but I think it will be very worthwhile. Who knows...he may teach me to dance yet!

Jess turns 21 on July 3rd. I can't believe how fast the years have gone. If you are in the neighborhood, please stop by and wish him a Happy Birthday!

Four Years Today

I have been reading my past posts from June 2004 and reflecting on the last 4 years today. Jess and I are home alone and he has been pretty meloncholy. It has been 4 years today since his accident. I just look at June 17th as the birth of my new son.

We have been working on two new things with Jess and he is doing quite well I must say. One is turning on his bedroom light when we pass by the light switch. At first he would just move his hand a little when I asked and then I would help him reach the switch to flick it on. Last night he moved his whole arm with gusto and tried to reach it by himself. It was an event for celebration!

The other new move that Chris has been working on for awhile is to gently kick his bedroom door open when he wheels him through the doorway. The door is usually not completely open. Again he usually would only make small movements with his foot but the other night he gave it a good kick and moved the door all the way open.

I emailed Dr. Jill Bolte Taylor regarding the book she wrote "My Stroke of Insight". It took her 8 years to recover from a stroke. Anyway, this was her comment:

Dear Pam, thank you for this very kind message. I think you will find my book of tremendous value in helping Jess. Never give up and pay attention to the very little things and remember to celebrate with gratitude every day for what you have. I wish you all the very best. JIll

The book is great. It has given me insight on what Jess is going through and how I can help him. I will never give up! Enjoy your day!

Postponed

I heard from one of the doctors at the Cleveland Clinic last week. She said they have postponed accepting Jess into their study. It does not mean he won't be considered again in the future, it just means they want a little more experience before they perform the complex procedure on him. We were disappointed but now I am trusting that everything is in right devine order and that there is a reason for the delay. We have learned it is better to go with the flow and are trying to look at the positive instead of finding another reason to be more depressed and sad. I always said I didn't know if I wanted him to be one of the first candidates. I guess someone was listening.

We are looking for another CNA or LPN to take Brandie's place in July. They need to be licensed, able to administer medicine, have good qualifications, not be afraid of seizures and comfortable with Jess' disabilites. Not asking for much, are we!

Summer is taking it's time getting here. We are anxious to get Jess outside more. He is healthy and hasn't had a seizure for awhile. We changed his medication so hopefully they will not come back. I just ordered a walking harness sling for him. We will try hooking him up to the ceiling lift in the sling, put weight on his legs and move him as though he is walking. We'll see!

Graduation

We made it through the emotional last week of school. We did not go to the graduation exercises. It would have been too emotional for us and too stimulating (seizures) for Jess. Unfortunately, there was a tragic accident as a result of the parties held in honor of graduation. Two teenage girls were killed in a rollover coming back from a canyon party. I worry so much at this time every year. No matter how you try to enforce safety to kids...they think they are invincible. Our thoughts and prayers go out to the families.

The girls were in a 1993 Jeep Cherokee which is one of the worst vehicles for rolling and roof strength. I bring this up because tomorrow is the Senate hearing on roof crush in rollovers. Please send your good energy and letters to senators if compelled to change the law on making our vehicles roofs stronger. I was not able to be there but we will be in spirit.

We are still in limbo as far as the Cleveland Clinic goes. We are just trying to go on with life and not put too much emphasis on the possibility. The anxiety is too much to handle.

Jess has been very alert lately. I was able to get him to grab a large metal spoon out of a metal mixing bowl yesterday. His hand does not work the way he wants it to but he was determined to figure out how he could make it grab the spoon. He also was able to put it back in the bowl and drop it. I think he liked the noise it made. I can't tell you how excited I was to witness his ability to think about what he wanted to do and make it happen. I am reading a book about the plasticity of the brain and how we can retrain our brains. It is giving me the reassurance that we must keep trying new things with Jess and keep letting him know that he can get better and that he is doing an awesome job.

Chris and I reflect on the fact that it has almost been 4 years since the accident. A very long 4 years. We have had many new friends and many wonderful people come into our lives and support us through those years and we thank them all. Here is a letter I submitted to the newspapers relaying our gratitude but I don't think they are going to print it so hopefully it will touch some of those who it pertains too. We love you all!

May 27, 2008

To: An Amazing Community

We are amazed at the support, generosity and compassion we gratefully receive from this valley. We want to thank everyone who participated in two fundraisers recently held for our son, Jess Matey.

The Quest Class at the Wood River High school had a car wash provided by the Valley Car Wash. The students graciously donated the proceeds to help Jess with medical expenses and travel incurred on a recent trip to the Cleveland Clinic. He is being evaluated for a specialized deep brain stimulation procedure that may help him walk and talk again. The kids were amazing and spent two days at the event. They also helped to get 400 petitions signed for the June 4th Senate hearing organized by People Safe in Rollovers in Washington D.C. The goal is to get the auto industry to strength the roofs in our vehicles.

Mauro Zavala organized a dance at the Next Stage Theater for his senior project. He also donated the proceeds to Jess. We are so grateful to Mauro and all of the students who supported the dance and reached out to help a fellow student.

This is Jess’ last year attending the W.R. high school. We thank all of the students, staff, administration and therapists that welcomed and helped Jess at school every day. We especially thank Brandie Hopwood, the para pro and caregiver who drives 4 days a week from Mackay to be by his side and take such awesome care of him.

Jess has been riding at the Sagebrush arena for the last 4 years since his accident. We thank the outstanding staff and wonderful, important volunteers assisting him twice a week.

This community is like no other. We could not survive this difficult journey without so many people. The wonderful friends, therapists, alternative therapists, EMT’s, E.R. and hospital staff and strangers that have come to our rescue are appreciated beyond our words. We truly are blessed and forever grateful to each and every one of you.

Pam, Chris & Jess Matey

One week left of school

Jess only has one week of school left. He graduates this year and will receive a diploma. He only needed 5 credits in 2008 to graduate. It will be the end of our having kids in the school district for the last 30 years. I wish Jess was on his way to college. He wanted to get his computer science degree. We are not sure what direction we will head now.

Brandie is pregnant and will be leaving us on July 3rd...Jess' birthday. She has been an incredibly wonderful addition to our family and we will miss her very much. We have not heard from the Cleveland Clinic so we have not been able to look for someone to take her place. This is a real test in patience!

We have gotten Jess to blow bubbles through the little kid's plastic wand, make a sound on a harmonica and blow on a whistle. Tracy, our speech therapist, has gotten him to stick out his tongue and touch his lips. He is still trying hard to lift his left knee up and his eyes are tracking in all directions now. Little improvements that mean so much. We just keep on keeping on!

Happy Mother's Day to all!

If you are interested, there is going to be a doctor (neuroanatomist) on Oprah's website tonight that had a stroke. Because of her knowledge she knew what she was going through and explains what was happening to her brain during the stroke and how it took her 8 years to come back. Here is the link to read about it: http://www.oprah.com/xm/oprah/oprah_main.jhtml?promocode=HP_oaf .

Jess has been blowing out a flame consistently. He also pushed my hand away before I could change the bandage on his belly that protects his feeding tube last night and then he grinned at me. Yes! It was so cool. He has been moving his arm out of the way of his dad when he teases him and pretends to bite his finger for quite awhile, which is fun to watch. But, my Mother's Day present from him last night was him pushing my arm away several times and then grinning at me.

Jenn sent me a video on neuroplasticity http://www.hd.net/drr313.html that is really interesting. It talks about what meditation can do for the brain with an interview with the Dalai Lama. It verifies that exercising the brain is most important and shows how a stroke victim was able to relearn how to use his arm when he was not given much hope. We know the brain can repair itself. So, we wait!

Yesterday, we drove Jess to St. Anthony, Idaho where my mom is living now. We wanted to make sure he could see she was ok and in a nice place. He gave her a big smile when he saw her. It made her day! It was so good to see her. It made my day!

No news from Cleveland. Yes, we are very anxious!

Still waiting...

We are still waiting to hear any news from our trip to Cleveland. Maybe this week!

We heard the dance a student, Mauro Zavala, organized in Ketchum for Jess was a great success! What a wonderful young man to think of Jess and incorporate his senior project all in one! Brandie took Jess into the dance but they went pretty early and didn't stay long so they didn't get to socialize much. Jess gets pretty tired after a long day at school and so does Brandie. Thank you, Mauro, for showing your caring and wonderful spirit to Jess! Hopefully, we can meet you soon!

We are home!

We made it home from our trip to Cleveland. It was quite the trip! Everyone was extremely kind and considerate at the Cleveland Clinic. It was so nice to have such a good experience in a hospital environment. The facility was amazingly large with approximately 32,000 employees. We were able to walk to our many appointments from our hotel room on the campus. Unfortunately, Jess did not respond very well for the first couple days. We discovered he had an ear infection which must have been miserable while we were flying. We were able to get him some antibiotic ear drops and it really helped the next few days. I arrived home with a 102 temperature and have been very sick with the flu since we got home so we are wondering if Jess was sicker than we thought with more than just an ear infection. We were so blessed to have Chris' mom and sister there in Cleveland. They helped us with supplies for Jess and goodies for our hotel room and Chris' sister Jenn provided us with transportation. His mom made us some wonderful meals and we felt so lucky not to be alone in some big city doing what we were doing. We love you guys!

The people at Northwest Airlines were incredible too. They had assistance for us at every airport and allowed us to be the first to board the airplane. The flights were difficult though due to the seats not reclining enough to support Jess' head. We had to take turns holding him up or repositioning him so he would be comfortable. We had one gentleman offer us his first class seat but we couldn't accept because we could not let Jess be by himself. Even those seats didn't seem to recline much.

We are glad to be home. We do not have any answers yet but hopefully we will know something soon. Everyone was encouraging and of course got attached to Jess quickly.

When we got home we read a wonderful article in the paper about a fundraiser being held for Jess. We are so grateful to Jess' Quest class at school. They are having a car wash for Jess today and tomorrow in Hailey. They wanted to help raise some money to help us with the trip. They also are getting petitions signed for the People Safe in Rollovers Foundation to help support the bill proposed for Congress to pass which will adequately strengthen roofs and substantially reduce the annual deaths and catastrophic injuries due to the crushing of roofs in rollover accidents. I heard they already have over 200 petitions signed. We are so excited that there is going to be a senate hearing on this issue in June. We can't thank everyone enough for their support. Chris and I stopped underneath Jess' billboard in Boise on the way home and had a quick lunch. We were so impressed and amazed at the size and location of the billboard. We hope everyone passing by will investigate why it is there and help in the crusade to save others from going through what our family and so many others have been through.

Thanks for checking in!

The Billboard is UP!!!

I have wonderful news! Jamie called to tell us her friend in Boise called her to let her know she saw Jess' billboard (click on billboard to see what it looks like)!!! She said it is on Chinden Boulevard near Curtis heading back in to downtown Boise. She said it is very noticable and you can't help but want to read it. We are so excited! It is our way to honor our Jess and a way to help People Safe in Rollovers get the word out to everyone driving by the billboard how important the issue of roof crush in vehicles is. Thank you so much to all of you who donated to get this billboard placed. If you are in Boise, please go check it out.

In fact, Paula just called me to say that Senator Mark Pryor called her to say the roof crush issue is going before the Senate on May 6th in Washington D.C. This is such wonderful news! This is how we can get action and how we can make a difference. She asked us if we could attend. I would love to take Jess but, oh my, the logistics are overwhelming. Where there is a will...there is a way, though, so we will see.

We have our airline tickets and are ready to take Jess to Cleveland next week. We will know on the 17th if he is going to be accepted into the 2 year study. I will be updating the website on the 23rd. Thank you everyone for the well wishes and prayers for our safe journey.

Jess has been doing well. His dad got him to blow out a flame the other day. He actually pursed his lips to blow which is a huge accomplishment. He also tried very hard to reach a ball that I tied on a string from the ceiling above his bed. You could see his concentration and effort to move his arm and open his hand to reach it. He has also been kicking his foot off of his foot rest on his wheelchair and raising his knee off of the bed when he laying on his bed. I think he is practicing so he can pass the tests in Cleveland. His smiles have made our days! Here he is smiling at his long time friend Mikey.

A Change in Plans

A call from Jenna at the Cleveland Clinic changed our plans...again. She confirmed that "if" Jess is chosen as a candidate for the surgery it would not take place until July. We would need to be in Cleveland for a month of rehab before the surgery (to establish a baseline of where he is right now) so we will be going in June if he meets the criteria. Instead of packing the trailer for a 6-9 month adventure I now have been scrambling to get airline tickets for April 14th through the 22nd so we can get Jess to the Cleveland Clinic for evaluation.

I booked tickets on Northwest and ironically we have a layover both ways in Minneapolis. I called to see if Joey could get a gate pass to help us transfer Jess in and out of the planes. It will depend on the airport security. Jess is so long legged it is hard to get him into the little aisle wheelchairs they have so Chris usually ends up carry him onto the plane. It would be nice for him to have big strong Joe to help. Not easy carry someone who is 6'2 and 155 pounds and putting him in a small space. Without neck and trunk control, he has a hard time sitting in the seats without a deeper recline. We take his neck brace and end up supporting his head most of the flight. It's been two years since we've flown with him so maybe it will be easier since his neck has gotten much stronger. We have to gate check his wheelchair so we can get him from one gate to the other. Thankfully, they are going to provide us with a wheelchair van to get us from the airport to the hospital.

They have 3 hotels on site. One was $260 a night, the other $160 and one comparable to a Holiday Inn will give us $99 a night since we will be there a week. We have to take a lot of stuff just to care for Jess in a motel room. Unfortunately, the grant to help with expenses doesn't start until he is accepted into the study. But, we are so grateful for this opportunity... it will be worth the money and the hassle.

I have been home alone during the days Jess is in school and my house is echoing. I can't remember when I have had alone time at home. It's been almost 4 years of just trying to keep up with everything, now I get to catch up. I keep thinking I need to go check on someone, though. Today would have been my parents 70th wedding anniversary and dad will have been gone a year on the 6th. I do miss them both. When mom talks to Jess on the phone he smiles and moves his lips like he would love to say something to her. She is doing well and has lots of visitors with my aunts, uncles and cousin close by.

Jess' friend Dustin stopped by and again Jess just lit up to see an old friend. He moved so much when Dustin left I thought he was going to jump out of bed and yell, "wait for me". I can't imagine what his world must entail. I hope it is not as bad as we feel it might be and that he isn't as frustrated as we think he is. Only Jess knows!

I emailed a lot of you the good news about The Insurance Institute for Highway Safety (IIHS) study on roof crush. Here is the article from USA Today http://www.usatoday.com/money/autos/2008-03-11-car-roof-safety_N.htm#chart.
Please check out your vehicle and make sure you or someone you love is not driving the ones that our dangerous. Here is another site that gives you info on any car http://www.iihs.org/news/rss/pr022608.html. Everything we tried to show in our lawsuit against Ford has been confirmed. I just wish the judge and jurors could have understood. Thank goodness for people like Paula Lawlor (People Safe in Rollovers) and the father of the boy who was killed in the same Explorer Sport Jess was in for their commitment to right a wrong. I wrote many letters to Senators, Governors and the National Traffic Safety Association but their constant pressure made the difference. I wonder how the Ford attorneys sleep at night!

Love to all...

Conference Call

It looks like we are going to the Cleveland Clinic on April 12th. We had a conference call with one of the main doctors on the research team, Dr. Kubu, and she gave us a good idea of what the process will entail. The screening process will take 3 days and then we will know if Jess is a candidate for the surgery. She felt he had a good chance of being accepted into the two year research study. I won't go into what will be involved until we know for sure he is accepted. We feel very fortunate that they are considering Jess and will, as always, do anything we can to help him recover. We are driving to Ohio in Jess' van and travel trailer. Thank goodness we got it fixed up to accommodate Jess last summer. It will be a long drive but it will be nice to have our home on wheels so we can have all the things necessary to take care of him. I will have a laptop to keep you updated on our trip.

Because we may end up being gone for an extended period of time, mom helped us make the decision for her to go to an assisted living home in her hometown of St. Anthony, ID. We moved her there on Tuesday. Thank you, Marlene for the use of your horse trailer and Mikey for helping Chris load it! It is a nice place and I think she will enjoy the people and the comfort of knowing she is not alone. Her sisters and brother-in-laws live close so they will keep an eye on her. It was very emotional to leave her and we miss her! She had a hard time saying good-bye to Jess. She has been around him since he was born. As Mikey reminded me, they both spent a lot of time at her house after school when they were growing up...eating cookies and whatever other goodies she had to share with them. It seems like yesterday....

The Screening Process

I got home from Minnesota on Thursday evening. I did have a wonderful trip and enjoyed holding that beautiful little grandson of mine. Joey and Angela are wonderful parents and are having fun with the new addition in their lives.

I had so much fun traveling with my granddaughter, Jahara. Her first airplane ride was memorable for both of us. She even got to sit in the captain's seat and look at all of the instruments.

They gave her a certificate and a pair of wings since it was her first flight. There is nothing like looking into a child's eyes and seeing the amazement of discovering the world.

My kids treated me like royalty and would not let me lift a finger unless it was to hold the baby. They both kept commenting on how hard it was for me to just relax. Relaxing has not been part of Chris or my reality in a long time.

Jamie got moved into her new place. She still has a lot of unpacking but I felt much better to see where it was and to know that they will be safe and comfortable. We are sure going to miss them.

Chris, mom, Brandie and Jess got along just fine while I was gone. Five days went pretty fast for all of us. I can't thank Brandie enough for helping Chris during my absence.

While I was in MN, I received a phone call from the Cleveland Clinic saying that they would like us to be there on the 24th of March. I calmly had a heart attack!! How were we going to get organized and book travel in that short of time? It is not easy to travel such a long distance with Jess. And, I also have my mom to worry about, my job and Chris does not have a replacement or anyone to cover at his job until after April 10th. I explained my delemma and I was able to request a little more time. They were incredibly understanding and so we are now looking to go for a screening appointment sometime at the end of April. If he passes the three days filled with physical, neurological and imaging tests, they will accept him as the 4th candidate in the study.

Here is information taken from a great article I found:

"We knew that some patients in MCS (Minimally Conscious State), including our subject (the first candidate), retain functioning brain networks above the brainstem," explains Dr. Schiff, who is also Weill Cornell's Director of the Laboratory for Neuromodulation.

"Activity within these integrated neural networks is supported by cells in an area of the brain called the central thalamus, which is thought to be key to adjusting brain activity as it responds to cognitive demands," he says. "Our theory was that electrical impulses targeted to this area would help amplify the existing low level of activity that we thought was already there," adds Dr. Giacino. "In other words, we assume that the signals that help drive speech and movement are still present in the brain -- we're just 'bumping up' their efficiency and function, to help get them working better."

The DBS (Deep Brain Stimulation) surgery targets deep-brain structures with millimeter-precision using computer-generated maps, image-guided navigation and physiological brain mapping. Tiny electrodes are implanted into these deep-brain structures and connected to programmable pacemaker batteries in the chest. The operation was complicated by the extensive damage to the patient's brain from the traumatic injury. The procedure was performed in two stages and lasted 10 hours. DBS surgery is FDA-approved and routinely performed for patients with Parkinson's disease. Various clinical trials using DBS for the treatment of epilepsy, obsessive- compulsive disorder and depression are also underway.
After an initial "titration" period -- during which the team calibrated the best dose and timing -- the patient began a 6-month, double-blinded on/off "crossover" trial, with periods of DBS alternating with periods where he did not receive the therapy.

"Without further study, we have no means of knowing for sure that the functional improvements we have observed will be seen in other subjects, yet we expect that we will find other patients who will respond," Dr. Schiff says. "We can say that this patient's recovery of oral feeding and communication abilities was strongly linked to the DBS. But even more encouraging is the fact that the patient's functional gains continued even during the off-phase, suggesting a carryover effect from treatment."

Will the DBS-treated patient continue to improve? The researchers say it's still unclear, although the brain's innate plasticity means the man could build on the gains he has already made. This first DBS procedure is part of an FDA-approved pilot study that will include 12 patients in post-traumatic MCS." Here is the link to the article if you are interested: http://www.sciencedaily.com/releases/2007/08/070817215750.htm#

If they can "jump start" Jess' brain, we truly will finally get our miracle. I will find out more next week and will post information as I get it. With everyones help, we will be able to do this pioneering procedure for Jess. It is a major decision for us to make and we need your prayers and trust that this decision is going to give Jess back some quality of life that he so deserves. Thank you and our love goes out to you all!

We are going to Cleveland!!!!

We finally got the phone call and the doctors loved the video and are excited to work with Jess. I don't have or know when or how but I will be back with more info when I get it. All I know is I asked for the "right" answer and I got it!

Jamie made it driving to Minneapolis and is moving into a new place today. Thank you to the powers above for her safe journey. Jahara and I fly out of Boise tomorrow and I get to see my new grandson.

It has been extremely busy here having my little 4 year old granddaughter all week. Jess is doing well and doing suttle new things. I better get busy packing. I will be back Wednesday and hopefully will have more good news about the Cleveland Clinic.

P.S. Curtie let us know he has a new website. Check it out:

Hello everyone and hello Jesster buddy man, buddy dude. Yep, sounds like me, doesn't it? Just stopping by and saying hello for the first time in a little while. Hope all is well and good, as it is here. Kind of bored at times, but I can keep myself occupied pretty well. If y'all want to leave me a note, my website is curtisland.50megs.com (I got a guest book). It might be easier to get the word out if Pam posted it on the next post, so Pam, could you plese do that? Thanks much, and I'll see you all later!

So strange!

It is so strange that the Cleveland Clinic has not returned my phone calls. They were the ones who called me to alert me of the process they were starting to review Jess' records. Oh well, I guess there is a reason.

Jess was smiling a lot yesterday. He seemed to be in a very good mood. And then, I got him home from horseback riding and therapies and got him on his bed. I walked out of the room for a second and from the kitchen I heard the bell on his bed ringing so I ran in there and he was having a small seizure. I put the bell on his railing for that reason. I hurried to get his medicine and he stopped! Thank goodness! He continued to smile later in the evening and seemed just fine. Sometimes we think he goes into a seizure because he wants to do something and gets too frustrated. Do you blame him?

Chris has worked every day for the last 7 days getting the nordic and snowshow trails ready for the Special Olympians. The event started today. He feels very honored to be able to help. This is a trial run for Idaho to host the National Special Olympics next year. It will be a wonderful event. I wish Jess could participate.

Please keep up the positive thoughts for Jess and thanks again for checking in.

We will get an answer!

Sorry to say, I have no news from the Cleveland Clinic. I left messages for two days and did not receive a reply. Not sure what's up but eventually we will get an answer. Here is a link if you want to read more about the procedure we are considering for Jess... Deep Brain Stimulation. They have already had success with two candidates so it is encouraging.

Thanks for checking in...we appreciate your positive thoughts.

No news!

We did not hear from the Cleveland Clinic today. I will give them a call tomorrow. I hope no news is...good news! Thanks for checking on us!

Well, we do not know yet if they are going to accept Jess at the Cleveland Clinic or not. We were very anxious for the phone call last Wednesday but when we got it they just informed us they would need another week to go over his records and images. We are waiting patiently... or not...for the phone call this Wednesday. Hopefully, we will get the right answer and be able to make the right plans from that answer. We have all been saying a lot of prayers for guidance. In the meantime, he is doing well! He has been trying to hold his head up in a different manner in the last week or so and has shared quite of few of those wonderful smiles that we missed so much when he was sick.

We have had several exciting moments occur for our family. Jess is a new uncle to a brand new nephew. Joey and Angela are proud parents of a beautiful baby boy who was born on February 16th. We are all so excited!

Jamie and Jahara came home this weekend so we celebrated the wonderful news together. They also had good and bad news. They are moving from Boise to Minneapolis to be closer to Joey and Angela. I know it is for the best which is the good news but we will miss them so much which is not so good. Jamie is driving a truck full of their furniture and pulling her car all the way to Minneapolis on March 1st. I am flying Jahara there on the 7th to meet Jamie and I will also get to spend a few days with little Breck Joseph.

Change is good, they say! We just have to know we are always in the right place at the right time for whatever reason. I'm struggling a little with that one but time heals...doesn't it?

The Flu!

The day after my last post Jess became very sick with the flu. He had a 101 fever and a nasty cough. We worry about aspiration and pneumonia so I called his doctor hoping he would come to our house to see Jess so we wouldn't have to take him out in single digit weather and around a lot of people. Well, we don't live in the "Little House on the Prairie" days. The doctor was too busy to come by so he just prescribed 3 days worth of strong antibiotics and a decongestant. Luckily, something worked and he was doing much better within about 5 days. We kept him home all week and sent Brandie home so she wouldn't get it. I woke up on Tuesday with 102 fever and spent 4 very sick days. Chris had to work so Jess and I spent a lot of time moaning together. It was brutal! I got panicky a few times thinking about how Brandie is the only person that really knows how to care for Jess and if something happened to us who would take care of Jess. It wasn't a good feeling so I am going to get on with the search for other caregivers. I hope the new facility will be built here soon so maybe we can get them comfortable caring for Jess in emergency situations. Chris came down with the flu a couple days after me and spend his share of time with the fever, chills and cough in bed. We are all just now feeling much better except now mom has it. Jess went back to his normal activities this week.

Unfortunately, Jess' good friend, Curtie was in a climbing accident last weekend. He was climbing on the YMCA climbing wall and fell 30 feet due to equipment failing. He broke his back in three places, punctured a lung and got a slight concussion. We are so thankful to hear there is no paralysis. I swear he has 9 lives. He is doing well at home now but will be in a body cast for 3-4 months. We love you, Curt and wish you a speedy recovery!

Eye Appointment in Boise

Here is an update on the eye appointment we had with Dr. Johnson in Boise. Unfortunately, he did not watch the video I sent to him. He did notice a big change in Jess' alertness and eye tracking...thanks to all of our therapist's hard work. Here are a few of his comments:

1. Jess is not seeing double. He said when his left eye wanders Jess actually will shut off the vision in that eye. He said it is important for us to encourage him to bring it in alignment with the other eye or to cover the right eye and get him to track something to bring it back.


2. He really wants us to use the board Tracy (our speech therapist) uses with the choice of letters on it. She has Jess choose a letter to spell words. He wants us to expand it to get him to do simple addition with numbers. Playing cards might work too. He also said to use pictures that will interest him. He wants us to ask questions and to get him to use yes/no blinks to answer. He also thought it would be good to get him to look at pictures of music, tv, a light, ect. We need to ask him to look at his choice of activity. He wants us to expand on his cognitive abilities and make him use his brain more. He said that will lead him to using an eye gaze program.


3. He wants us to put Jess' prism glasses on more than less. He said they challenge his brain and helps with balance. He also wants us to continue to patch his eyes in all sorts of ways.


4. He said Jess can see out of both eyes.


5. He said if he is bored he will close his eyes and shut us out so we need to change what we are doing. Pictures of pretty girls might help! The light on a pretty girl may keep his attention. Imagine that!


6. The staring is normal and because we can snap him out of it...it is a good thing. He doesn't relate it to seizures.


7. Because we do not know what he can really comprehend, we need to challenge his thinking.


8. Everything done must be done in slow motion so he can catch up to it with his eyes.


9. When we move him quickly and his eyes go digital it is his vestibular system catching up. Normal.


10. We are on the right track in what we are doing in therapy.

The best thing he said is Jess is progressing and that is awesome to hear!

Chris and I are reading a book right now called "Secrets of the Lost Mode of Prayer" by Gregg Braden. It states how important it is for everyone to see what they want, not what they don't want. In other words, we need to see Jess whole, perfect and complete. We must see him walking, talking, strong, healthy and healed. And we must be grateful for knowing that this has already happened! Help us with this vision. We are a mirror of our feelings and with good feelings, we will see a miracle!

Eye Tracking

I just finished making a video of Jess eye tracking for the eye doctor and wanted to download it here...but it failed. I wanted to show you how Jess can track with his eyes. When we first came home from the hospital Jess could only look to the left. He can now look right, left, up and down. He also can sometimes identify letters on a board to spell different words by looking at one letter at a time. I want to thank all of his therapists who have worked so diligently on his eyes. I feel he is ready for an eye gaze program. We have an eye appointment on Friday in Boise so I will discuss the options with his doctor. I would still like to get him back down to the eye specialist in California. She was so good and saw potential in him two years ago.

Jess has also been moving his shoulders and arms differently. He seems to be more aware of his movements. He is holding his head up longer and shifting his hips a little while Chris holds him up standing. These are all encouraging for us to see.

I called the Cleveland Clinic last week and talked to the research assistant, Jenna. She informed me that the doctors have requested Jess' files to review again. She said it was a good sign. The second patient they performed the brain stimulation surgery on in December is doing very well and is in intensive rehabilitation now. She said they were anxious to pick the other 10 candidates so they could continue with the study. She also said the procedure and the 6 months of intense therapy would be paid for by grants. We would only have to pay for our transportation and our stay in Ohio. Her enthusiasm gave me hope that Jess would be chosen. We don't want to get too excited though and then be disappointed.

Keep the prayers going for Jess. We need all the help we can get to keep us all going! With love...

Brandie & Grandma Juliann's Birthdays

Good morning,

So far, the New Year has started off quite uneventful for Jess. Brandie's birthday was on New Year's Day...Happy Birthday, Brandie!!! We hope you had a nice week off! . And, Jess' Grandma Juliann's birthday was yesterday...Happy Birthday, Grandma Juliann!!!!

We have gotten a lot of snow in the last few days. Chris works at 4 in the morning at the nordic center 4 days a week. He tries to get in a 10 hour day setting all of the tracks at Sun Valley for the nordic skiers. I have had Jess by myself all week. I really miss Brandie. I take over on the nights Chris sleeps with Jess at 4 a.m. Here is a taste of our day...we give him medicine at 5, start his feeding at 6, more medicine at 8, get him dressed which takes an hour, do range of motion, give him water at 10, get him up, feed him at noon and give him medicine, work on some sort of communication or he has therapy, more water at 2:30, medicine at 4, Chris stands him, we make his food at 5, do personal care at 6:30, water at 7:30, get him in the bathtub or ready for bed, medicine at 8, let him watch t.v., listen to music or a book on tape or read to him, tea at 10, medicine at 11 and then we collapse at 11:15. There is a lot more involved but this is just a taste of our day. They are busy and when you have Jess alone you don't get much else done. We really appreciate the 4 days Jess goes to school with Brandie. I can go to work about 15 hours a week and get the other chores done around the house.

Jess is still adjusting to the increase in seizure medication. He hasn't been sleeping very well at night so we are all lacking on the restful sleep. It takes a good two weeks to get some sort of normalcy after a seizure and increase in medicine. Last night I finally slept for a good 6 solid hours and feel so much better. Tonight hopefully Chris can get a good night's sleep too.

An article came out in the news of record in our paper this week stating that Jess received a judgement to receive insurance money owed to him. After 3 1/2 years the driver's insurance finally paid us the $50,000 of "liability only" insurance that was on his car. There is a catch...because Jess is on Medicaid, Medicaid has locked up the money because they want to be reimbursed for the money they have spent on Jess. We have to go before the Supreme Court in Boise in February to try and get the money for Jess. There was a U.S. Supreme Court ruling on another lawsuit similar to ours a few years ago. The court was in favor of the disabled person because she would have ended up with no money to support her for the rest of her life if she paid back what Medicaid had paid. Hopefully, we will be successful too. As I have said before, you think you buy all of this insurance to protect your family but you would not believe what you go through getting them to pay when something so devastating happens. Jess was innocent and in the wrong place at the wrong time. There is no way to relay how much financially he will lose in his lifetime because of the accident. The expert witness in our lawsuit against Ford estimated his lifetime loss at over $20,000,000. And, who knows how much we have lost financially. So, beware and try to be aware of what you are really paying for when you write out those checks for insurance! It's the fine print that doesn't get your attention.

We try not to be angry or bitter because it really doesn't do us any good. We have a warm house, cars to drive, food on our table, family and friends who send lots of love and we are still capable of doing what we can for Jess. Those are the important things!