January 26th, 2009

Jess has been pretty sick for the last 3 weeks with a bad cold. Unfortunately, having a cold, not being able to blow his nose and having difficulty swallowing all contribute to his seizures so it has been a vicious circle of worry and sleepless nights. I was able to catch him in time to talk him out of 3 seizures during the middle of the night but he did have one that lasted a little over 10 minutes and we stopped it with medication. They are less severe so far.

He is finally getting better and we have seen a few smiles again this week and he is sleeping better. He has shared most of the smiles with his brother Joey, his wife Angela and little Breck who have been visiting for the last week from Minneapolis. Jess really perks up when he sees his brother and sister or old friends. Dustin came to visit and I could tell he just had so much he wanted to tell him.

We are still working on all possibilities of helping his progress. What else can we do? Hope everyone is starting 2009 with positive thoughts to turn this dreary situation in our world around. Just like we can't give up...we all can't give up! Take care!

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.