Happy New Year!

I just returned home from taking Joey and Angela back to Boise to fly home to Minneapolis tomorrow. We had a wonderful week with them and Jamie and Jahara. Jess was very alert and smiled at all of them all during the week. I know he had so much he wanted to share with them and must feel so frustrated that he can't get the words out. It was really hard to see them all leave.

We did give Jess 10 mg of Ambien one day and he did seem to move and wiggle more than normal. It only lasted for about an hour and then he was pretty wiped out. So, we decided it's not worth tiring him out at this point. Maybe he's just not quite ready.

He had a few visitors during the week such as his good friend Dustin, a substitute teacher, Tracy, who spent time with him at school, Angela, a friend from when he was about 10, and his other long time friend Mikey who ran into him at therapy. I wasn't there but heard from everyone that Jess gave Mikey a look and a smile that lit up the room and all of their hearts. We know he's in there and that kind of response just verifies it. He does miss his friends. Thanks to all of you for sharing some time with him.

We took the whole family and Brandie to the play, "Snowflake" one night. It was a very entertaining and heartwarming one man play. The actor had also been in a car accident earlier in his life and was told he would never walk again. You would never know it watching him dance around the stage. Jess was very attentive and actually turned his head and eyes following him across the stage. We were quite the group with Jess' four year old neice, his 88 year old grandma, his sister in law who is eight months pregnant (with my little grandson), his mom, dad and his sister. It was an evening we all remember.

Jess had a little seizure yesterday. It again was scary and reminded us of how things can change in an instant. He stopped on his own and I quickly gave him extra seizure medication and Ativan to ensure he wouldn't start up again. We, of course, always wonder what triggers the abnormal electrical discharge in his brain but we never seem to find a reliable cause. The after events are always interesting. This time he has been very alert today and seemed happier than usual. Other times it wipes him out for a couple of weeks. We are just glad it didn't last very long.

Not much more to report except we want to wish everyone a wonderful remaining holiday and the best New Year ever! We are expecting lots of good surprises! Why not?
Our love to all...Pam, Chris & Jess

Three and one half years today!

I don't have any new news. Jess is doing just fine. He is healthy, warm, loved and he even shares quite a few smiles lately. Today marks 3 1/2 years since Jess was hurt. They told us not to expect much change after one year but if we give up and listen to those thoughts...what then? I say you never give up and so what if a year or two or three has past. We are all still here! And, what do they know anyway...miracles happen everyday!

We have not heard from the Cleveland Clinic but today they performed the brain stimulation surgery on the second of the 11 candidates for the study. We send them our best wishes for another success!

We are so anxious for Joey, Angela, Jamie and Jahara to come home for Christmas. There is nothing better than to have family around at Christmas. Enjoy getting into the Christmas spirit! It is a crazy emotional hustle bustle time of year that comes and goes so fast. Take a deep breath and enjoy. It will all be over before we know it!

Where is our miracle?

I just wanted to give you a quick update. We gave Jess the Ambien for 3 days and did not see much change so we stopped. I think we will try again tomorrow. We just wish we knew what Jess was feeling. He didn't get sleepy. I emailed the doctor that was on 60 minutes at the Cornell University to get more information on the protocol for using Ambien but I have not heard back from him.

I also sent the video to the Cleveland Clinic so we will see what they think of my beautiful son! He did do some good moves on tape.

I'll be back with more info soon...

Ambien

Today we gave Jess the sleeping pill, Ambien that was broadcast on 60 minutes last Sunday. We had an appointment with his neurologist on Friday and asked her for a prescription. We gave it to him at 10:30 a.m. and, of course, had expectations that he was going to start talking to us. Not quite, but he did move his legs and arms a lot more than normal and when Chris was standing him he shifted his hips back and forth. It was pretty weird that he didn't sleep much all day. We are going to try it every day for a week to see if it does anything to help him respond.

I will be sending the video off to the Cleveland Clinic this week. The second candidate will be going into surgery soon. We are anxious to see if their will be another positive outcome. It would be a wonderful miracle for that person and for the family.

Snow is falling and the holiday mood is upon us. Enjoy the season...we need to all take time and remember what is really important. Good night!

Added note: Just wanted to let everyone know we did see 60 Minutes last night about the minimally conscious people that have taken the Ambien sleeping pill and "woke up". It is ironic because exactly one year ago today I asked our neurologist about it and she said there was no scientific proof it worked so she didn't advise us to try it. We are going to pursue it again!

I hope everyone had a nice Thanksgiving. The holidays are still pretty emotional for us. It just doesn't feel good to sit down to dinner and not have Jess filling his plate a mile high. I did give him some mashed potatoes and gravy and some sweet potatoes but he had a hard time swallowing. Later on I tried pumpkin pie and that was a success. We were glad to have Jamie, Jahara and Jess' Aunt Claudia here. Little "Ja Ja" always keeps us hoppin' and doesn't give us much of a chance to be too sad.

Jess started to have another little seizure the night before Thanksgiving but it stopped on it's own....thank goodness. We have increased his medicine and he is not sleeping very well. He grinds his teeth and acts like his stomach hurts. It would be nice to know if it is the medicine causing it. Chris and I are not getting much sleep either.

This week the Wood River Journal printed my letter to the editor (scroll down to find the letter titled Ford Should Be Held Accountable) this week. I do hope the people that needed to hear it...read it! I won't elaborate on it because if you also read it you will get our point of view on the whole subject. I just wish the government would listen.

Hopefully, things will be calmer now. It has been a rough month. We are trying to get the video created to send off to Cleveland. They want to see what kind of responses Jess can make. They have another person going into surgery for the procedure the first week of December. We are anxious to see if that one will be a success too.

Before we know it, it will be Christmas. It has been down right cold here but no snow yet. Jess sends all of you his love.

Happy Birthday, Grandma!

Today is my mom's 88th birthday. She is such a strong lady and a great helper for me with Jess. She watches him while I do things around the house, she talks to him so loving and she reads stories to him. She has always been close to Jess since he was born.

Thank you, grandma! Thanks for always being in my life!

Jess has been doing ok. Not many changes and he finally has recovered from the seizure. We have increased his medicine and so far have not seen too many side effects. He has a short week due to Thanksgiving. His sister, Jamie, his neice, Jahara and his aunt, Claudia will be here for turkey dinner.

It is the season to be grateful...grateful for all our friends and family. Thank you to all of you for being part of our lives! Happy Thanksgiving!

Please Light a Candle November 18th, 2007

World Day of Remembrance for Road Traffic Victims

Sunday 18th November 2007

from "Make Roads Safe"

"Public remembrance is not for the benefit of victims to remember what happened to them. Victims remember well what happened to them. Public reflection is the act of recognition. It states to the victims and their families that their humanity is valued, that their loss is our loss and that their suffering is shared, if only through recognizing the tragedy and error of its occurrence."

The United Nations has designated the third Sunday in November every year as the official World Day of Remembrance for Road Traffic Victims.

This World Day provides an opportunity to remember the millions of people who have been killed or injured in road crashes across the world; to show solidarity with those living with injuries and disabilities from road crashes; and to call for better support for those who have been left behind: the families of road crash victims, who have to deal with grief; a search for understanding about how and why their loved one was killed or injured; a demand for justice and accountability from those responsible; and support in putting their own lives back together.

This World Day is also the annual day of action to demand greater national and international efforts to reduce the tragic toll of death and injury on the world’s roads.

What you can do:

‘Light of Hope’. The European Federation of Road Traffic Victims (FEVR) is calling on people and organizations to light a candle to ‘remember and reflect, remember and respond’. Please support this ‘Light of Hope’ initiative. See here for more details. For more ideas for marking the World Day, please read this guide prepared by WHO, Roadpeace and FEVR.

Make Roads Safe petition. One practical action you can take during the weekend of 16-18 November is to sign and circulate the Make Roads Safe petition to your friends, family and colleagues or to the community in your place of worship. You can download a paper copy of the petition, which calls for UN action on global road traffic deaths and injuries, here. Our petition will be presented to the UN Secretary General in advance of a UN debate on a proposal for a first ever UN Conference on Global Road Safety. Help us to achieve this objective by supporting the petition.

Please share this information with anyone you know that needs remembered.

Thank you....with love!

NOT a Piece of Cake!

I spoke too soon in my last post. Jess had a grand mal seizure at 5:00 a.m. on Wednesday morning. We did stop it with a lot of medication but it was so frightening. Everyone wonders if he might not be able to handle the anesthesia and the other drugs they gave him in the hospital. It was in July that he had the last one. He was "wiped out" all week. I stayed home and watched him like a hawk. Brandie stayed with him all week too and then he went to school on Friday. Brandie said he had more facial expressions and quite a few smiles...a good sign. We had to up his night dosage of seizure medicine and so far it doesn't seem like it has affected him too much. We were hoping to get to a year seizure free so he could get off the medicine. So...we just start over! Sending lots of love to all of you...

Piece of cake!

Jess did very well with the oral surgery. We only stayed one night in the hospital and just had to use the suction machine a couple of times. It took 1 1/2 hours to remove all 4 wisdom teeth and he also cleaned his teeth really well. The doctor was wonderful and so was the staff at St. Luke's. Dr. Nelson said he thinks they were probably hurting him quite a bit. We had an idea that was the case. Glad to have that one behind us. Jess will stay home with me tomorrow and then be back on schedule on Tuesday. Thanks for all the prayers and good thoughts!

Wisdom Teeth

We finally have an appointment at the hospital to get Jess' wisdom teeth removed. We are going in tomorrow (Friday) and his surgery is at 12:00 pm. He will need to stay the night in the hospital so they can monitor the bleeding, his pain and help with his swallowing. I just wish Jess could tell us how he feels. Please send a few prayers in his direction tomorrow.The oral surgeon from Boise was able to get temporary permission to do the procedure up here. It will be much easier since the staff knows Jess so well. Thank you, Dr. Nelson!

I just got a phone call from the Cleveland Clinic. They are requesting a video of Jess showing the things he can do. I guess that means he still might be considered for the surgery. Whew...

I had to go to Boise this week to the Supreme Court. It seems that Medicaid wants us to pay them back the money they have spent on Jess. We recovered some auto insurance dollars and now they want a chunk of it. We won the case here but they appealed so we now have to go to Boise. There was a similar case presented to the US Supreme Court in which a girl was injured like Jess. She received a settlement from insurance and Medicaid wanted to be paid back. Luckily, she won the case because to pay them back would have taken all of the money she had to help her recover. They just don't understand the financial impact a tragedy like this has on a family. So, unfortunately, we didn't solve anything and we will have to continue at a later date. You would not believe what you have to go through when something like this happens. You think you do all the right things to protect your family and you find out quickly why they write all of the fine print in policies. Then, you find out you have to have an attorney to understand what it all means. We have a strange system. I could elaborate but it is not good for my blood pressure!

I do have good news...Jess is going to be another uncle. Joey and Angela are going to have a little boy, Breck Joseph, in February. We are so excited! I just wish they lived closer.

I will let you know how the surgery goes. Thanks for checking in!

We love those smiles!

Boy, the days go by way too fast for me. It has been 17 days since I updated this site. Sorry! Let's see...I have not got another precious hug from Jess but he has been smiling with both corners of his mouth more often. Jamie and Jahara came home this weekend and he gave his sister the biggest smile. She has not seen him for a couple months and couldn't believe how many more facial expressions he had. There is nothing that makes us happier than to see Jess smile!

We had a wonderful visit from Daniel. He helped us awhile back with Jess and became a very special friend to us all. He came back here from Maine to show off his beautiful baby girl and to visit friends and family. He also got a big smile from Jess. Daniel once shared this with me:

Children

And a woman who held a babe against her bosom said, Speak to us of Children. And he said: Your children are not your children. They are the sons and daughters of Life's longing for itself. They come through you but not from you, and though they are with you yet... they belong not to you. You may give them your love but not your thoughts, for they have their own thoughts. You may house their bodies but not their souls. For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams. You may strive to be like them, but seek not to make them like you, for life goes not backward nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth. The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far. Let your bending in the archer's hand be for gladness; For even as He loves the arrow that flies, so He loves also the bow that is stable. - Kahlil Gibran -

Jess has wonderful cranio sacral therapists that come to work with him every Friday. Beth (on the right) has been with us since Jess was hurt. She often brings others who work in the energetic field with her. Denise (on the left) has also become a very special person in our lives. We are blessed to have such loving kind souls surround Jess in love and energy. Beth also recently introduced us to a friend that she met in Brazil while visiting John of God. His name is Calvin. He spent four Fridays with Jess sharing his love and prayers to help heal all of us and support us while we try to understand what has happened to us. He assured us that everyone that touches Jess leaves with a gift...the gift of unconditional love. Thanks Calvin...we miss you!

We still have not heard from the Cleveland Clinic. I suppose they have many medical records to go through before they can make their decision. I finally got so frustrated regarding the oral surgeon in Boise getting permission to operate on Jess' wisdom teeth at our local hospital so I went to the hospital to speak with the CEO. He was out of the office so I spoke with the lady who is second in command. She was very kind and offered to do all she could to expedite the process. Hopefully we will hear something soon.

I will try not to take so long in sharing the days in the life of our Jess. They are always full of surprises! Good night!

Amazing Technology

We had a visit yesterday from a speech pathologist and her associate from Montana. They were recommended to me from the Elks in Boise. They are "gurus" in the augmentative communication devices. They hooked up a computer that had a program on it that actually could teach Jess how to do mores code. Our problem is still the delay in which Jess hits the switches and at times he is "just off with the angels". They also showed us a device that is called the Tango. It enables a person to speak through the device by hitting buttons. It is brand new and amazing. The problem with this device is it is geared towards a younger age and the voice is a young boy and it costs around $7,000. They are in the process of developing one for an adult. For now we are going to try a new switch that is called "Chickadee" or a "Step by Step communicator with levels". They both allow Jess to activate recorded messages. We talked about an eye gaze program but it will still be awhile.

It was wonderful to have such expertise in helping us decide the next step to take to help Jess communicate. Tracy, our long time, wonderful speech therapist, came over to listen. She hopes these women could do a seminar here in the valley to help other therapists see what is out there in the technology world. We will work on that one.

For us, it was kind of a sad day. There are so many ways to help Jess communicate but his participation is very limited and it is hard for Chris and I to see just how huge his limitations are. We live in our little dream world of this all being so temporary and when reality hits us in the face it is hard to deal with that reality. But, step by step, we will never give up and we will go at the pace Jess chooses. It is not about the destination...it is about the journey. I have to keep reminding myself of those words.

Fall is upon us and it is the most beautiful time of year here in the mountains. We don't have to go far to enjoy the colors. Jess is horseback riding right now and I am going to pick him up to go to speech therapy. Our days go fast and here it is another month. It has been 3 years 3 months and 13 days since Jess' accident.

Happy October...enjoy the colors!

Our Peaceful Warrior

I rented a movie last night called The Peaceful Warrior. I highly recommend you watch it. It is a true story taken from the book, The Way of the Peaceful Warrior, written by a gymnast and author, Dan Millman. Here is a quote about the DVD, "This film in some way calls us to living with a peaceful heart and a warrior spirit - to live with courage and love, to stand tall even when we stand alone, to do what is right and speak and live our truth. This is what the peaceful warrior's way is all about."

I bought the book for Joey close to 20 years ago when he was racing as a nordic skier. Chris also read it and Jess started to read it. It is still on his book shelve. Dan Millman was the guest speaker at a wellness fair here in Sun Valley that we attended. He has a wonderful way of sharing the experiences and lessons that he has learned as a superior athlete.

The film reminded me...again...that this life is all about the journey and not the destination. How many of us can love ourselves, our children, our mate, our parents, our friends, the strangers we meet for who they are right now and not for who we want them to be? I know, for me, it can be a challenge and is my lifetime work.

We have been told by many special messengers that Jess chose this path he is on to teach all of those who cross his path, unconditional love. Yes, that is a hard one for us to swallow. We miss the Jess we knew so much. But if it is true, we must honor his choice and love him unconditionally without expectations or desires to have him be anyone but who he is right now. Knowing my Jess, he would be the one to sacrifice his life for others. He once told me at the young age of 16, "Mom, I could die tomorrow and it would be ok. I have lived a good life and experienced so much." I looked at him and said, "But Jess, you are only 16!" He replied seriously, "I know, mom, but I have done more and lived more than most do in their entire lifetime."

He wanted to be an NBA player because he loved basketball, but also because he wanted to be an inspirational speaker and knew kids would listen to him if he played for the NBA. He didn't get that chance but maybe in this condition he is more powerful at getting a message across than he would have been as an NBA player. It is important for us to find a different way to listen to him.

Most of the people that touch Jess' life have truly given him unconditional love. We hear often that Jess gives them a gift far greater than they are able to give back to him. Of course those comments bring tears to my eyes. I will always feel we are so blessed to have the many friends that have come in different forms to touch all of our lives. I guess if there can be one good thing that came out of his accident, it has been meeting all the wonderful, kind and loving people that have shared this journey with us.

Watch the movie. You won't regret it. We all need a reminder to let go, forgive and love most importantly ourselves and then everyone around us "unconditionally".

A Close Call...

Mom and I had a very close call this week. I took her to St. Anthony, Idaho which is about 3 hours from here to see where she and dad wanted to have their ashes spread. It is in a place called "Hog Hollow". Both my parents grew up there and mom shared many fond memories with us of her childhood in the early nineteen hundreds. My two brothers, my two aunts and my two uncles (who are like my second parents) went with us. When we got out of the car at my aunts house I knew we were at the right place because of the wonderful smell of homemade bread. Hog Hollow is a beautiful place where my dad duck hunted, my parents spent a lot of time, where both their parents had homesteaded and where there is a beautiful view of the Grand Teton mountains. It has changed with development, but not too much for mom to remember land marks. It all made me realize how fast life goes and how special times with family are. It was truly a memorable day! I even got to see two of my cousins that I was fortunate enough to spend many fun days with when I was small. We had some good laughs!

On the way there, though, I received a phone call from Chris saying Jess had not opened his eyes since we had left the house that morning. Brandie had called him from school. I wanted to turn around but he said he was going to take him to the doctor and would call as soon as he knew something. Of course, your mind wanders to the most awful places...had he gone back into a coma?? No, he had an eye infection. He is much better now. It is always so frightening because Jess cannot tell us what is wrong or where it hurts.

On the way home, we were following a pilot car and a wide semi truck with a large flatbed trailer on the back carrying some kind of large machine on it. We were going through the lava beds at over 60 miles an hour when all of a sudden I heard a sound like a shotgun had gone off in our car and large pieces of debris were flying right towards our windshield. I swerved to keep a huge section of rubber from hitting us and realized we were headed into the lava beds so turned the wheel back and felt the car bounce back on the wheels. My little Toyota Corolla had come off the ground, scraped the front bumper on the ground, wore off part of my tire and landed back on the ground. All of this happened in a second. I drove 20 miles an hour for 10 miles in shock that we were still alive. I know now what terror Jess was going through in the car he was in, but unfortunately he was not as lucky as mom and I. I realize now that the only thing that saved us is the (click here for info) ESC - electronic stability control that is on my car. Paula (from People Safe in Rollovers) informed me that all cars manufactured will be required to have that on their cars soon. Thank goodness!

The Cleveland Clinic called to verify they had received Jess medical records and that the team of doctors would be reviewing them and we will hear from them soon.

I also want to mention that Curtie's mom, Linda, had some very serious surgery and is doing well. Please send some good thoughts and prayers her way for a quick healing and safe trip home. We send our love your way, Linda!

Thank you everyone for your comments. It is good to hear feedback. I have not gotten another hug from Jess but he has given his dad and I a few cherished smiles. We continue to wonder, wait and try to find the good things in each day.

A Good Cry!

Mom and I had a good cry this afternoon. Jess was lying on the couch on his side and I was in the kitchen mixing his dinner...always with one eye peering out checking on him. I stopped what I was doing to watch him moving his left arm and hand in very different motions. I decided to let him know I was watching his movements and that it was wonderful to see. So, I leaned down on my knees next to the couch and looked him in the eye and told him how great it was to see him moving his arm so different. I asked him if he thought he could raise his arm around my neck and give me a hug. He raised his eyebrows like he always does when he is pondering a request. It took him a few minutes to wiggle and turn his hand but sure enough he raised his arm and plopped it right around my neck. I started to cry. He knew I was crying and he squeezed a little tighter which made me cry more. After I composed myself and told him I had waited 3 years for a hug, we tried it again and he did it again. To make sure I wasn't dreaming I asked mom to come in to the living room and watch and he did it again and she cried. There is nothing like tears of joy! Every minute of every day we watch for something new and different to surface from Jess and when we see the littlest thing it gives us reason to wake up one more day.

Jess had a good week at school with Brandie. He is taking a debate class and a class called Quest that is like the class he has taken in the past that is very interactive with the students in which they talk about real life situations, goals, problems and life in general. He also works on the computer and has OT and PT. He starts back horseback riding tomorrow after a 3 week break. We could use some volunteer help if anyone has a free hour on Mondays at 11:00 or Thursdays at 11:00. You basically walk around the arena beside the horse holding on to Jess. Tall guys are very valuable!

I sent all of Jess' medical records off to the Cleveland Clinic last week. Here is a statement regarding the procedure that I found written by Dr. Rezai:

According to Rezai, the procedure required much more precision when used for minimally conscious state. "You have to target specific parts of the brain with millimeter precision using various computer-generated brain maps and physiological mapping," he explained.

It sounds pretty technical and a bit scary. Keep some good thoughts and prayers going for the right decision to come through for our Jess.

I also had a conference call with the Elks Rehab in Boise as a result of our visit there. They were very complimentary of our care and our persistence in getting Jess what he needs but unfortunately they didn't give me that magic cure I was hoping for. They did have some good contacts for augmentative communication systems and some camps that might be fun for Jess to attend next summer.

I received an email regarding Paula Lawlor's visit to Washington D.C. Here is an article written about the event: Safety Crusaders Seek Political Action on Roof Crush Injuries. I can't wait to talk to her soon to see just how well she felt it went. Thanks again for everyone's help!

We sure would like to hear from you...I feel like I am always having a one sided conversation. Just click on the link below and leave Jess or us a comment. I like to read them to Jess. Love to all!

School Starts Tomorrow

The fires are finally contained, my friends are safe and back in their homes, our mountain landscape has regretably changed, but we are so appreciative to the hard working fire fighters that saved so much of our land and structures. It was an emotional couple of weeks for our valley. Emotions that were comparative to how Chris and I have felt for 3 years.

It's September and Labor Day weekend is over. School starts tomorrow after a week's delay. I always feel strange when Jess goes back to school. It is hard to let him out of my sight. I know he will be just fine and probably enjoys getting away from our constant attention to his every need. I'm sure he will enjoy listening to the kids talk about all the things that happened in their lives over the summer. Just being around young energy is a wonderful thing for him. I don't know what we will do next year. I guess no one knows what they will do next year. Life can change in an instant.

We did hear from the Cleveland Clinic. Jess is one of 34 chosen to be evaluated for the brain stimulation surgery. I have to send in all of his medical records which luckily I have on CD's because of our lawsuit. We are a little nervous about the surgery but will go through all the steps to see if Jess could benefit from it. Here is a statement I found from Dr. Rezai the head surgeon:

"According to Rezai, the procedure requires much more precision when used for people in a minimally conscious state. You have to target specific parts of the brain with millimeter precision using various computer-generated brain maps and physiological mapping," he explained."

Everyday I still think this is all a strange nightmare and I'm sure I will wake up and see Jess getting ready to go back to college, laughing, running outside to shoot a few baskets, sitting in front of his computer chatting with his friends or raiding the refrigerator at all hours of the night. It is still so hard to believe this is real. You would think after 3 years it would get a little easier.

We have a conference call with the Elks therapists in Boise this week. They will give us recommendations for things that might help Jess communicate better, I hope. Now that the hospital is opened again, I think we can schedule a time to have Jess' widom teeth removed. He will have to stay in the hospital to make sure he doesn't aspirate. We will be glad when that surgery is over.

Until next time...good-night!

Wildfires!

There is so much to tell you I don't know where to begin. At about 7:30 p.m. this evening they just announced another evacuation of over 1,000 people in our mid valley. A fire started from lightening over a week ago and we now have over 1200 fire fighters trying to keep up with it. We had strong winds today and are expecting more tonight. It is so smoky here and everyone is very worried. We have many friends that have had to leave their homes. The house Chris was doing a remodel on was also evacuated so he is out of work temporarily. We are quite a few miles south of the fire but we are watching what is happening very closely. Here is the website we are watching: www.blainecounty.org

Jess, Brandie, my mom and I took Jess to Boise on Tuesday night. We stayed with Jamie and Jahara and they took such good care of us. We had a van packed full of "stuff". It is not easy to take Jess out of his comfort zone. The first night he and I only got a couple hours of sleep. I don't know what I would have done without Brandie helping me to get Jess to all of our appointments. I sure appreciated her willingness to go with us.

We had an appointment with the Elks rehab doctor on Wednesday morning. She has not seen Jess for 3 years. She complemented us on how well Jess looked and on all of the things we were doing with him. We talked about stem cells, drugs and the brain stimulation at the Cleveland Clinic. She warned us not to go to China for stem cells but hopes like all of us that our country will realize the importance of doing more research here as soon as possible. She did think we should pursue the brain stimulation but warned there could be risks. (Jess is still on the list to be evaluated for the procedure.) She also told me to check into the University of Pittsburg because they seem to be on the cutting edge of new brain injury research.

We had an appointment later with an oral surgeon to see about having Jess' wisdom teeth removed. He was a wonderful doctor that I actually found on the internet. He had read all of the info I sent and said he was going to see if he could do the surgery up here at our hospital. I couldn't believe he was willing to travel almost 3 hours to remove Jess' wisdom teeth! There are wonderful people in this world. He said they would have to watch him carefully for aspiration so he thought it would be better for us to keep him in the hospital over night so they could watch him closely. The only problem now is they have evacuated everyone near the hospital because of the fire.

We also met the next day with all of the therapists at the Elks Rehab Hospital. They evaluated Jess. I was hoping they could give us some miracle to bring Jess back but they just said we were doing more than anyone they had seen in our situation. They did have some suggestions and a contact for me to someone in Montana that is very good with communication devices that might be able to help us find a better way to communicate with Jess. The doctor and therapists will get together next week to discuss recommendations for us and will conference call us sometime next week.

We also visted the place where we purchased Jess' wheelchair and ordered a new seat and some worn parts on his chair. I took the van in to have the wheelchair lift looked at and they made some minor adjustments. It was a very busy two days.

We have all been busy getting petitions signed for People Safe in Rollovers. If you have any petitions to get to Paula please send them to reach California before she leaves for Washington D.C. on September 4th. She was able to get a billboard company in Boise to put a billboard up in Jess' honor and I think we almost have the $1,500 to purchase the vinyl billboard. Thank you to everyone for participating in this critical event. Paula did an interview with a radio station regarding the issue of safer roofs on our vehicles. The link is here. It is eye opening!

School is suppose to start Monday but I have a feeling it will be postponed until the fires calm down. It will be Jess' last year to be around his peers. He lights up when he is around friends his age. I don't know what we will do after this year. One day at a time! Pray for our fire fighters and everyone's safety. Mother Nature is very angry at us I think. There is a lot of tragedy in our world right now. We need to help change the energy!

"Please help!"

Many of you received an email from me regarding a very important issue that came to our attention this week. It is in regards to roof crush in vehicles. The roof of the 2001 Ford Explorer Jess was hurt in crushed! It crushed down on my beautiful son's head at a speed of 12 miles an hour. We are living with the nightmare of that fact every moment of every day.

There is a lady by the name of Paula Lawler who started a non-profit organization. Please click on People Safe in Rollovers! She has a video of her address given at the Emergency World Summit on Roof Crush in Washington D.C. in July on this website. Please, in honor of Jess, listen to this video. Read her articles and educate yourself and tell everyone you know. None of us are safe in American made cars. Who will be next?
The manufacturers know we are in danger and they choose to ignore it. She needs petitions signed to take to Congress by the 27th. Help us stop putting the people we love in jeopardy!

I have prayed for an avenue to help me alert the public of this issue and I finally found it. Will you help us? Joey has put the petition under Downloads on the right side of this website. Print it and get as many signatures as you can. We are also working on purchasing a billboard in Jess's honor to be placed in Boise. There is a flyer explaining how People Safe in Rollover's has partnered with a billboard company to get this message across the world. If you want to donate to the cause there is information on People Safe in Rollovers.

During the time I had shut down this website we were going through a very emotional lawsuit against Ford. It took over two years to get to the court room. We wanted desparately to make Ford admit responsibility for the roof caving in on Jess. We could not get across to the jury or judge the facts that Paula states on her website. We lost our lawsuit against Ford but we have not lost the battle to help right a wrong. We need your help!

Cleveland Clinic??

Friday was an amazing day! After watching that video and reading the stories about the man in a minimally consious state who was helped by Dr. Ali Rezai at the Cleveland Clinic, I began my search to get in touch with him. I was able to leave my name with the Research Department and thought it would probably be months before they contacted me. I knew they would be overwhelmed with calls. Luckily, I also emailed the neuro department. Amazingly, I received a phone call from his assistant on Friday. She asked me numerous questions and at the end of the conversation she said, "Well, Jess made it through Round 2". We are still very much in the preliminary phase but they are sending me a packet of information and forms to fill out. They are only accepting 11 more candidates. They will need a lot of medical history but if they feel he meets the criteria we will go to Cleveland for an evaluation. Mom and I hugged and cried and thought...maybe we will get a miracle. The family has been discussing if he did get accepted how we all feel about it. We will just have to see if we make it through Round 3.

Not long after that phone call, I got another call from the Elks Rehab in Boise. After a half an hour of questions, the social worker said he thought they could get Jess in for an evaluation with their team of outpatient therapists within the next couple of weeks. They will be able to let us know if we are on the right track with all of our therapies.

I also came up with a great idea to have Curtie, Jess' best friend come over one hour a day and work with Jess on the computer. He is very smart and knowledgeable with computers and he and Jess have been friends forever. He met with Tracy, our speech therapist, and they worked out a plan for a daily session with Jess to work on a special program called Boardmaker. Curtie sets up a way for Jess to hit a switch to scan through options of things he would like to do. He not only can see the option but he also hears what choices he can make. It's a great way to stimulate his processing and also gives him a way to talk back. With practice I think Curtie is going to make a huge difference. Thanks Curt!

So, after a few weeks of frustration and dead ends all of a sudden we have some wonderful options. I did say, I would have good news soon...you put it out there, set the motion and look what happens. My concentration for the last month has been "where or what do we do next" to the powers above. Why don't I remember...you just have to ask!

An interesting day!

What an incredibly interesting day we have had. For all of you who did not see Brian Williams on NBC Nightly News check this video out. (You have to wait for the video to go through a short advertisement.) Thank you to everyone who alerted us about the news cast. We were watching it so we got a first hand view. I have already contacted the doctor at the Cleveland Clinic and also have my sister-in-law, Jenn, finding out more info at the clinic tomorrow since she is in Cleveland. Yeah, Jenn!

At the same time I was frantically trying to find out more info regarding that news cast, another news blast came on stating a bridge over the Mississippi River in Minneapolis had collapsed. Chris and I were both trying to find Joey and could only get "the circuits are all busy". I was breathing in "Joey and Angie are safe" and breathing out "pure fear". We finally got a phone call from Joey saying they were all safe. Let's all send lots of prayers to all of those involved in the accident.

Early this morning our good friend, Barbara, called to let me know that Dick Hoyt from Team Hoyt was speaking in Boise. He is the amazing man that does all of the triathalons with his son who has Cerebral Palsy. I saw him and his son on Oprah. I really wanted to go to Boise but it was too late to make plans. Barbara had emailed Team Hoyt to find out more about the communication device Rick (the son) uses. I have angels everywhere. Anyway, they emailed her back with a connection to the doctor who is in Boston and is the guru of communication devices. He emailed us both very quickly. I will sit down tomorrow and hopefully have another option to help my beautiful boy talk to me.

Oh my, how things come in and out of our lives in many directions. All of this happened in the midst of feeding, bathing, dinner and 7 hours of work today. Whew! I am going to bed....good night!

Good news!

I just thought I would tell you some great news! Chris and I were just sitting by Jess in his room. He is laying on his bed. Jess normally keeps his left arm bent at the elbow most of the time. Chris asked him to straighten his arm and put it down by his side. He started rolling his wrist and moving his arm and all of a sudden down it went. He repeated the same motion on command 4 times. Huge! We get so excited for little movements especially on command. Well, I promised I would have good news and I am glad I could keep my promise. Good night!

Happy Birthday, Angela!!!

Lots of love to you! Hope Joey spoiled you on your birthday. Wish we could have been there to sing you Happy Birthday! Jess, Chris and Grandma send there love too!

We are not going to Michigan!

I forgot to mention that I did bring mom home the day after I got back from MN. She is really doing well. She uses a walker to get around the house and still tries to be independent. I have to keep my eye on her so she doesn't get too brave. My Aunt Lura and Uncle Homer who are in their 80's came up from CA to visit us the day after mom came home. They stayed for a couple of days and we enjoyed their company. And yesterday, Danny Moranz, a friend that Chris went to kindergarten with came to visit. He is riding his motorcycle (www.dansmotoride.blogspot.com) all the way across the country to South Carolina. He has some great pics on his website. It was great to see him, too.

I had a lengthy conversation with the a lady from the University of Michigan today. She said Jess was "not a good fit" for their program. It is designed more for someone who is farther along than Jess. She suggested we look into the Casa Colina in California. So, as usual, when one door closes you just find another that is open!

We had a conference call this week with Dr. Suter, the eye doctor in Bakersfield that we had examine Jess when we were there almost two years ago. Catherine, our OT from school, had sent her a video of Jess during therapy. We were hoping she could direct us going into the future. She was impressed at how well Jess was doing tracking and moving his eyes. We all feel he is ready for the next step to communicating but we are just not positive what that step should be. If I could just get help from a facility that works with a lot of traumatic brain injuries maybe we could find the key to helping him communicate. I can't tell you how frustrating it is not to be able find someone that knows what we should do. I refuse to believe this is all there is.

Jess has not been sleeping very well. He tries to sit up during the night and moans. He also grinds his teeth to get our attention. I tried everything I could think of to get him to sleep last night. We wonder what he is dreaming or thinking. It must be so frustrating to not be able to tell us what he needs. It is sure frustrating for us not to be able to help him. All we can do is talk to him and reassure him that we are with him and everything is ok.

Have a great weekend!

What is a normal life?

I have been quite busy for the last week. I had made a plane ticket to Minneapolis several months ago to see Joey run in his first triathalon on July 14th but did not think I could go on the trip due to mom's accident. Thankfully my family made it happen and I did get to go for 5 days with the help of Jamie, Brandie and Chris. Mom stayed up in the hospital so I wouldn't worry about her.

It was a wonderful trip and Joey did great! It was a bit hard for me to relax into a normal lifestyle since our lives have been far from normal for the last three years. I forgot what it was like to not be constantly worried about Jess and my mom's welfare. Everyone survived wonderfully while I was gone and Jess even gave me a smile when I walked in the door.

He has been doing well in therapies and he has been seizure free. I am checking on the possibility of going to the University of Michigan. They have an aphasia (loss of ability to speak or understand speech) program in which they can help Jess communicate. It is an intensive therapy program for 6 weeks. As usual, we will probably have to jump through hoops to get there. It would be a dream come true if we could have a better way to know what Jess wants and how he feels. Now, it is a guessing game.

Jess will attend high school for one more year and I can't believe it is a month away. I like him to be around kids his age so I am glad he will be back there soon. Brandie will be taking him this year. She is so good with Jess.

Well, that's all for now.

Need more good news!

Here is a picture of Jess, Curtie, his mom Linda and I celebrating Jess' birthday. He didn't know what to think of all of the balloons. I keep trying for a smile but they are pretty hard to get.

It seems I don't have a lot of positive things to write lately. I guess just getting through all of the events in June and July is positive. And, Mom is doing well. She is still in the hospital. Jess and I went up to see her today. She always gets teary eyed when she sees Jess. She said she really misses him. Jess grew up with her and dad around all of the time, so they are very close. She will stay in the hospital for a few more days to rehab her leg. We have a wonderful hospital here and they are taking great care of her. She has made a lot of friends. We may even have some leads on new caregivers to help us, too.

Unfortunately, the bad news keeps coming. Medicaid would not approve the two weeks I wanted to take Jess to the Elks in Boise. But, I have not stopped the process. I am trying for outpatient therapy next. We can stay in our camper in the parking lot and I can take him to therapy everyday if they will approve it. If that doesn't work, I guess we aren't meant to go to the Elks and I will search somewhere else. I am watching a website of a girl, Samantha, who is injured like Jess and is going to the University of Michigan for help with communication and voicing. Who knows?? Maybe we will go to Michigan.

The ceiling lift we use to get Jess in his chair, on the floor, in the bathtub, on the couch broke. I called to see if it was still under warranty and it ended June 6th. So, for $1,800 I will get another one. It is a lifesaver for; we, who are not 6'4 and 220 lbs.

Jess looks good and he is healthy but as we keep getting reminded...it has been 3 years. So what else is new! I will try to get more pictures downloaded. And, I promise to have better news soon. Jess is in the bathtub so I better go help get him out. Good-night!

Happy Birthday, Jess!

Brandie was with Jess today so I decided to hike up a hill that we have hiked with Jess several times in the past. He was always several minutes ahead of us, of course. I find myself trying to go to places we have been to see if I can feel his presence. When I got to the top I had this overwhelming feeling of wanting to just keep climbing up and up until I found him. Chris and I shed a lot of tears today. Today is his birthday. Twenty years ago we brought a beautiful blue eyed, blonde haired, beautiful boy into this world. We only got to spend 17 of those 20 years with him. Yes, you might say he has been with us for the last 3 years too, but it just hasn't been fair. We didn't get to see him laugh enough, talk enough, shoot enough basketballs, give us enough hugs, share enough stories, tell us enough of his goals and dreams...we didn't listen enough, play enough or have enough fun. It hurts so much sometimes not knowing if we will ever get a chance to say and do all of those things again. I know one thing we did do though...we have always loved him more than anyone could possibly love someone and we still do.

Thanks to all of those who remembered Jess today. He got lots of phone calls & cards, my friend Sheila did a great Marilyn Monroe version of Happy Birthday for him (she even got a smile out of him), Curtie and Linda brought him 20 balloons, little Jahara sang him Happy Birthday over the phone and his Grandma Juliann in Cleveland even played Happy Birthday on a harmonica for him. He is loved!

If you would like to leave him a message, please click on comments and type in your message. I will read them to him.

Have a safe and Happy 4th of July!

Life is challenging!

I don't know why our lives are so full of challenges but it just continues to throw curves that are almost too much to endure. The night before we went to Boise my mom slipped and fell in the dining room and broke her leg. She thought she was ok the next morning so she and I jumped in the car and drove to Boise for Jahara's birthday party. We came home on Thursday and Friday she was very uncomfortable so I took her to the E.R. The exray showed two cracks in her femur right below the joint. She had surgery on Saturday and the doctor inserted 4 pins in her bone. She is doing pretty well but will need a lot of therapy. At 87 it is scary! Don't ask me how she walked on that leg for two days!

And, tonight Jess had another seizure about 9:00 p.m. It was one hour after we gave him his seizure medicine. Luckily, the seizure stopped without any medication but now we will watch him like a hawk all night. We have no idea what brings them on or how strong they will be when they come. All I know is they are frightening!

I don't know what else to say....good night!

Happy Birthday, Jahara!

Tomorrow is Jess' neice's 4th birthday. Mom and I are driving to Boise to her birthday party. Jess was so afraid of holding her when she was born. We had her 1st birthday party in the hospital 10 days after the accident. She is so cute with him now. She reads stories to him and sits on his lap. She will look at him with precious eyes and whispers "I love you, Uncle Jess." HAPPY BIRTHDAY, JAHARA!!!

Jess is out with Brandie and his good friend Curtis right now at an outside concert. It made me happy to see him going out to somewhere fun with young people but it made me sad to see him so handsome sitting in his wheelchair. Jess loved music and he loved to dance.

It seems everyday I have so much to be emotional about. If only, maybe if, why???...I find so many questions that don't have answers. So, quit asking, right?

It sounds like they are home so I will close for this evening. We thank you for your good thoughts!

Three Years Ago Today

Today is an emotional day to say the least! Three years ago today our lives changed dramatically. It is also Father's Day and a difficult day for Chris because he misses the old Jess so much. And, it is the first Father's Day for me without my dad. I know he is in a better place but I sure do miss him. We are healthy, we have a wonderful family and friends, a roof over our heads and food on our table so we can always be thankful for something.

Curtie, Linda and Paul wanted to take Jess out in their boat this weekend. It was pretty much a tradition for Paul, Jess and Curtie to go to a fishing derby every year around Father's Day. It was too windy on the reservoir so we will take a rain check. This is a tough day for them, too. The tree the boys hit was right down the road from their house and Linda was not far behind them on her way home. Curtie walked away but not without invisible scars that will never be forgotten. We are blessed to have such good friends and only wish we could take away their hurt too.

On the lighter side, I decided on Friday that mom, Jess and I needed an adventure so we jumped in the van and drove to Twin Falls (60 miles away). I thought it might be stimulating for Jess to go to Winco and help me buy groceries. Oh boy, was it ever stimulating for all of us. Visualize this...me pushing Jess in his wheelchair and my little 87 year old mom pushing the grocery cart behind us. Jess was amazed at the lights and all of the stuff on the shelves and mom was weaving her way through an amazing amount of shoppers. I think a few people wanted to drop what they were doing to assist us. We did just fine. After I loaded the van, loaded Jess and helped my little mom get up into her seat we decided to stop at the strawberry farm on the way home. Mom watched Jess as I picked us 5 gallons of beautiful strawberries and then we came home. It was a fun and interesting day. Now, I am about to go make Chris a strawberry, rhubarb pie for Father's Day.

We wish all the dad's out there a very Happy Father's Day!

June 14th, 2007

Now that I know I am in the right spot I can continue with my update. Jess had another seizure on Memorial Day. We had planned on trying to go camping that weekend but ended up staying home. Thank goodness! We were able to stop it this time with medication but it is sure scary. So we increased his medicine 25 mg. He seems to be ok with it. In fact, we got a few half smiles yesterday. Those little smiles make my day.

Let's see, November was uneventful but busy. We keep Jess extremely busy with therapy, horseback riding and school. He only has one more year of school and the teachers of the two classes he has been taking (Psyche for Success and his computer class) retired this year. We will miss them both. They were close to Jess before his accident and have been wonderful to accept him in their classes. Every year the kids in the Psyche class have written a note to Jess at the end of the year. It would bring tears to your eyes to read what they say. I am saving them so Jess can read them all one of these days.

We made it through the holidays (they are always tough). This year at Christmas we had Grandma, Grandpa, Joey, Jamie and Jahara here so it was fun to have little Jahara (3) brightening up our Christmas morning. We even made our traditional popcorn balls.

The New Year brought us a new caregiver, Brandie. She followed me around for two weeks and then we flew my sister in law Jenn (who is an RN) out from Cleveland to take care of Jess while we sat in a courtroom for three weeks. Brandie worked side by side with her and became very comfortable with taking care of Jess. She has been an awesome addition to our family. She drives over two hours one way every week from Mackay, Idaho to spend 3 days with us and she spends the night with her mom and family. February and March is when the trial began but I will talk about that later. And then on March 29th my dad (89) had a bad stroke. On April 1st my mom & dad were married 69 years.

Mom and I, with the help of Hospice, kept him home, brought in a hospital bed and sat by his side for 9 days. Chris, Brandie and Amanda had to take care of Jess while I attended to dad's needs. After 5 nights with no sleep we finally found a wonderful man, who was actually a doctor and does volunteer work for the Senior Connection, came and sat with dad for two nights so mom and I could get some sleep. Dad passed away on April 6th at 11:25 a.m. We (mom, one of my best friends and I) were at his side. We all miss him so much. My mom still feels him sleeping next to her. I walk by their room and can't get used to him not being in his chair.

And now it's summer. Brandie is doing an awesome job of keeping Jess busy. Amanda has left us to relax for the summer and to pursue her nursing degree in the fall. I am trying to get Jess in to the Elks Rehab Center in Boise for two weeks so we can get new ideas and make sure we are on the right track with therapy. Jess needs another swallow evaluation. He is eating pureed food quite well so I want to move to the next step. Mom and I are working everyday with his moaning to turn it into words. His eyes are much better. He now can look past midline and to the right. He is looking up and down and I think we need to get him onto some new assistive technology. One disadvantage of living in this beautiful rural setting is the lack of expertise in brain injury so as usual I am not content to just sit still. I will not rest until I know that I haven't missed something. Thanks for checking in...I'll be back!

We are back!

Joey has created this new "blog" site for Jess. We are so lucky to have a computer guru in the family. I just hope I am in the right place to get this message posted!

I debated whether or not to activate a website again. But, I know there are so many wonderful friends and family that are wondering how our Jess is and how we are coping that I decided we needed to keep everyone updated on our beautiful boy because we are still in great need of all of that good energy you send our way. I don't know where to begin to tell Jess' and our story of where we have been in the last 6 months. So much has happened. It is hard to relay where we are with our thoughts and feelings. We are still, after 3 years, waiting for a miracle.

I will try to start back in September to give you an account of the events that have occurred since we last visited. Right after Daniel left, my dad got really sick and we had to life flight him to Boise. Mom and I drove to Boise. After a few days, we left him with my brother and Jamie and we came home so I could help Chris with Jess and mom could gather some things she needed. September 17th, the night we returned, Jess had his first seizure which lasted over 40 minutes. In the middle of the night, we called 911 because we were so frightened and did not know what to do. We spent a couple days in the hospital at his bedside. He was medicated heavily and was extremely exhausted for several days after the seizure. My dad remained in critical condition in Boise but after a few weeks was able to come home.

Jess has had 3 seizures since and they, along with the medication, have unfortunately slowed down his responses and the progress he was making. He was put on Dilantin and it made him so sleepy he could barely stay awake through any of his therapies or school. We decided to ween him off of it and...he had another seizure. The neurologist suggested a drug called Lamictal so for several months we had to give him both drugs because you have to ween a person off of a seizure medicine and the Lamictal had to be increased very slowly. At present he is on half of the "therapeutic level" that they want him on. He is starting to function better and is much more alert since we stopped the Dilantin. We made the hard decision to keep him at the lower level. It is a decision of having some "quality of life" as opposed to being so drugged that he is unable to respond to anything.

This is just the beginning of our journey since I last updated Jess' website. I will continue again soon. I better check to make sure this is indeed the right place to get this posted before I rattle on! Thanks for checking in on us. Love, Pam, Chris & Jess

New Site for Jess Matey

Hi Everyone,
We thought we would get with the times and provide Jess's information and updates through a blog instead of a website. I'm working on getting the historical information posted so that everyone can read from the beginning. Hope everyone likes the new format. Be sure to leave comments if you want to, we love hearing from everyone.
Have a great day,
Joey

P.S. My Mom will provide an update from the last 7 months soon!