Five Years Ago Today

What do you do or say on the fifth anniversary of a tragedy? Five years has gone by so fast but then again it has been an unbearably long time. When I look back through the pages of where we have been and what we have been through, I really don't know how we have survived the last 1,825 days.

We have done so many things to help Jess recover from the horrible accident that almost took his life away. We have never given up hope that something would click and help his brain heal. We have been to the Primary Children's Hospital in Salt Lake City, The Centre for Neuro Skills in California, Atlanta, GA to see a world renowned healer (John of God), the Cleveland Clinic for a trial that never happened, to Minneapolis to learn how to do neurofeedback and to Boise numerous times for numerous reasons. We even enrolled Jess back in school for four years hoping it would stimulate his memory of friends and of places and things he loved to do.
We have heard of countless prayer groups who have prayed for him, countless people who have prayed for him (including the Dahli Lama), countless people who still pray for him and we know some who have lost their faith and given up praying. We have seen too many doctors, have had too many tests and have endured too many sleepless nights.


We have done every therapy you can imagine with every kind of therapist. We have cried and we have cried and we have cried. And, unfortunately Jess is not much further on his path of healing than he was 1,825 days ago.



Our son still cannot walk, or talk, or laugh, or cry, or stand or sit without support, or pick up a pen by himself or call our names in the night when he is afraid, or even ask why this has happened to him.



But, he can smile, he can blink three times to tell me he loves me. He blinks twice to say yes and get the horse to walk. He gives his dad the cutest grin when he tries to get away from a big bear hug. He moves his leg occasionally when in the walking sling and hits his switch to make games on a computer react. And he can look at you with the most precious blue eyes and have a presence that makes you want to just cuddle up next to him and hope that if you close your eyes and be really still he might take you with him in his many travels in his dreams.

We are survivors. How or why, I am not sure. I guess we don't know what else to do but to keep believing a miracle will happen and Jess will return to us whole and perfect again. If not, we will always love and care for him as we are doing for as long as it takes. We will accept him for whoever he is today and not wish away the day wanting him to be who he was five years ago. We have found out you cannot live each day in sorrow or it will destroy your soul.


It was just about this time right now that we got the knock on the door five years ago. I am looking out at a beautiful sky full of wonder with the sun saying good night behind the dark and eery clouds. It is just another day in our lives, another milestone. We made it to five years and we are still all together and we still love each other. We still can hold each other and find small things in our day to help us feel glad to be alive. Maybe June 17th, 2009 is a new beginning of better days to come. I hope so. Don't you? With love....

April Already

It has been a long winter. It seems I have been so busy I sometimes don't even know what day it is. Chris worked a lot at the Nordic Center this winter so Jess and I spent too much time inside. We both have cabin fever. It will be so nice to get back to walking on the bike path and sitting out on the deck again. I am sorry I haven't written for such a long time.

It has been an emotional week for our family. We lost one of my special uncles on my mom's side of the family. "Uncle George" will be greatly missed. He meant a great deal to all of us!

Where do I begin about our Jess? The month of February was a good month. We didn't have any seizures and I thought we were "out of the woods". We are still giving him Chinese Herbs and a low dose of Keppra (seizure med). But, March brought us a couple of seizures. We can recognize their onset and stop them pretty quickly now but I will never be comfortable with them. I have done over 80 sessions of neurofeedback with him since we returned from Minneapolis last fall. I do believe they have helped along with the herbs. We think they have something to do with swallowing or his stomach.

We had a nutri-evaluation done with a blood and urine test to make sure he is getting all of the essential nutrients and found he was not doing well with the one can of Jevity that we were giving him for lunch. We mix a special formula or protein powders, supplements, rice milk, organic fruit or vegies, Omega oils and whatever else I feel he needs in a blender for his breakfast and dinner. It has to be blended fine enough to go through his feeding tube. When we came home from the hospital almost 5 years ago he was on 8 cans of Jevity a day. It was not agreeing with him then and the one can still isn't. It is very complicated to make sure he gets everything he needs through his tube. So, we are now trying a new diet and hopefully it will be better. I just wish he could tell me how he feels.

The people in our life keep us sane. I don't know what I would do without John (OT therapist)and Tracy (speech therapist). They come to the house now 3-5 times a week and have not given up on Jess from day one. They keep us going and from falling victim to that constant lurking companion...depression. We also have our acupuncturist Joan visit him once a week and the cranial sacral girls Denise and Jolinda come once a week. They bring such a special love to that boy. And the wonderful volunteers and employees at the horse arena who also have never given up on him and still get him on Charlie Brown twice a week to ride around the arena for 30-40 minutes. We still have one caregiver, Jaime, who comes 6 hours a week. She has learned a lot about Jess and it is great to have her around. We are trying to find more help but the thought of training someone already tires me.

A good friend Judy and Jess' long time friend Mikey have been coming one day a week to work with Jess. They paint with him or read to him or act out fun plays or sing to him or reminisce the past with him. He is so reactive to their presence and smiles so big. What a blessing friends are! And then there is his Uncle Jim who comes over and plays his guitar or accordion for him or he just checks in to make sure we are okay. They are all so important!

I have 3 special friends who call to check in on us or bring me lunch sometimes on Friday and fill me in on what is happening in our community. It seems the most I get out to do is grocery shop, go to the post office or drive to Twin Falls once a month to stock up on stuff. It has been a long winter.

I walked down the driveway to our mailbox one day and discovered an envelope addressed to Jess. When I opened it I began to cry. It was his high school diploma. He only needed 5 credits to graduate so the school graciously honored the 3 plus years he went to classes after the accident and gave him his diploma. I told him he needed to get on his way to college now. He just looked at me with those big blue eyes and smiled.

How is Jess? Jess hasn't changed much in the last almost 5 years. He tries so hard but just can't seem to link his body with his brain. Some days we think he is totally in there and knows everything we are saying and some days we don't know where is off traveling. He does new things and then they go away. We are constantly trying to find the easiest way for him to communicate so he can make choices in his life. We are still waiting for that miracle.

We visited a new eye doctor in Idaho Falls last month. She ordered him some new prism glasses that seem to help him keep his head and eyes straighter. He has a tendacy to find comfort looking and turning his head constantly to the left.

This month we are going to try to get his teeth cleaned and exrayed and will probably have to have his feeding tube changed. We wonder if it is causing an ulcer. They warned us it might. We are also going to take him to Boise to visit the United Cerabral Palsy center to check on some different options for assistive technology. As always, I am endlessly searching for something we may be missing.

This journey... I would not recommend for the weak at heart. We never thought we would be at this point after so many years. We are exhausted, confused and don't really know where we are going next, most of the time. But I guess we really aren't alone with those feelings these days. We just all have to find a little sunshine somewhere every day. We still pray that someday we will understand. Happy Spring and Happy Easter!

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.